Estratégia de disseminação de enfermagem

Estratégias de disseminação eficazes.

Philip A Scullion Professor Sênior, Escola de Saúde e Ciências Sociais, Coventry University, Inglaterra, e Disability Education Adviser, Royal College of Nursing, Inglaterra.

A divulgação de resultados da pesquisa ou outras mensagens-chave é cada vez mais reconhecida como um processo vital e complexo. Neste artigo, Philip Scullion pretende explorar e desenredar algumas dessas complexidades, examinar exemplos de estratégias de disseminação bem-sucedidas e fornecer informações valiosas. Argumenta-se que o processo de divulgação precisa ser maiorizado por organismos de financiamento de projetos, supervisores de pesquisa, pesquisadores e responsáveis ​​pela implementação de mudanças na prática clínica. Importantes iniciativas são reconhecidas antes do conceito de disseminação ser explorado. Os grupos fonte, mensagem, médio e alvo, todos os elementos-chave no processo de disseminação, são então examinados. Argumenta-se que a disseminação precisa ser cuidadosamente considerada na fase de design dos projetos de pesquisa em relação a cada um desses elementos. Este artigo conclui que o compromisso atual de pesquisa e prática baseada em evidências terá um impacto limitado na atenção ao paciente, até que um compromisso semelhante com a disseminação seja evidente nos níveis corporativo e individual.

Enfermeira Pesquisadora. 10, 1,65-77. doi: 10.7748 / nr2002.10.10.1.65.c5880.

Não a última palavra: estratégias de disseminação para pesquisas centradas no paciente em enfermagem.

Introdução.

Os resultados das pesquisas possuem valor para muitas partes interessadas, incluindo pesquisadores, populações de pacientes, organizações de defesa e grupos comunitários. O objetivo deste estudo é descrever o processo sistemático da nossa equipe de pesquisa em elaborar uma estratégia de disseminação para um estudo de pesquisa completo.

Metodologia.

Organizamos um evento de divulgação para alimentar os resultados do nosso estudo aos participantes e as partes interessadas e colecionamos feedback sobre o nosso estudo. Nós aplicamos a estrutura de divulgação da Agência de Pesquisa e Qualidade da Saúde para orientar o desenvolvimento do evento e reuniu os comentários dos participantes durante o evento.

Descrevemos a nossa estratégia de divulgação junto com os participantes e # x02019; comentários e sugestões para nossa pesquisa como um exemplo de uma maneira de projetar uma disseminação focada no paciente e na comunidade. Nós explicamos os detalhes de nossa estratégia de disseminação, incluindo (a) nosso processo de relatar um grande estudo de pesquisa em um evento de partes interessadas, (b) feedback dos interessados ​​coletados no evento, e (c) a tradução de feedback em nossa equipe de pesquisa; # x02019; pesquisa. Também descrevemos os desafios encontrados durante o processo de disseminação e formas de lidar com questões como logística, financiamento e pessoal.

Conclusões.

Esta análise fornece informações fundamentais e conselhos práticos para pesquisadores que procuram maneiras inovadoras de divulgar suas descobertas nas comunidades leigos e científicas.

INTRODUÇÃO.

O processo de disseminação da pesquisa é um aspecto crucial de qualquer estudo, especialmente a pesquisa que envolve diretamente a comunidade. (Chen et al., 2018) O conhecimento produzido através de investigações sistemáticas (a) informa o desenvolvimento do conhecimento no campo científico; (b) garante que os métodos, análises e conclusões do estudo sejam abertos ao escrutínio científico e público; e (c) garante que aqueles com um interesse adquirido na pesquisa compreendam e se beneficiem das descobertas do estudo. Os itens do Protocolo Padrão: Recomendações para Ensaios Interessantes (SPIRIT) estabelecem diretrizes para formas éticas de disseminação de pesquisa, afirmando que a divulgação e # x0201c honra as motivações altruístas de pacientes-sujeitos, & # x0201d; que os participantes são & # x0201c; têm direito a conhecer os resultados da pesquisa que a sua inscrição tornou possível; & # x0201d; e essa disseminação é & # x0201c, consistente com o dever de compartilhar novos conhecimentos. & # x0201d; (Mann, 2005) Embora os periódicos revisados ​​por pares, as conferências profissionais e as comunidades profissionais continuem a ser excelentes mecanismos para entregar resultados à comunidade científica, os pesquisadores devem capitalizar a oportunidade de reforçar seus objetivos profissionais distribuindo amplamente os resultados da pesquisa para todas as partes interessadas. (Chambers e Azrin, 2018)

Como pesquisadores de enfermagem, devemos reconhecer o valor de nossa pesquisa em várias audiências. (Timmons, 2018) Devemos nos esforçar para apreciar os impactos potenciais da nossa pesquisa para participantes do estudo, populações de pacientes, organizações comunitárias e organizações de políticas. Nossas pesquisas científicas podem ser valiosas de formas que não foram originalmente planejadas pela nossa questão científica, e o processo de disseminação e o planejamento da pesquisa futura são um momento ideal para envolver essas partes interessadas. (Anderson et al., 2018)

Nossa equipe de pesquisa recentemente experimentou essa encruzilhada no final de um estudo nacional transversal entre mulheres adultas com história de câncer. Nosso estudo de pais visou desenvolver uma medida de auto-defesa dos pacientes para avaliar sua capacidade de satisfazer suas necessidades diante do desafio. Acreditamos que este conceito é crucial no atual clima de desigualdades em saúde contínuas (Adler et al., 2018; Lyratzopoulos et al., 2018), cuidados médicos cada vez mais complexos (Collins et al., 2009; Reyna et al., 2018) , e interesses criados na promoção do envolvimento do paciente em suas decisões de cuidados de saúde (Frank et al., 2018). Decidimos divulgar os resultados do nosso estudo não apenas para os nossos participantes, mas para um público mais amplo da comunidade que teve interesses adquiridos ao discutir nossos resultados e imaginar potenciais etapas futuras. Desta forma, ambos poderíamos compartilhar nossos resultados e construir uma comunidade com pessoas com ideias afim e parceiros comunitários interessados ​​em abordar a necessidade de auto advocacia dos pacientes.

O objetivo da nossa estratégia e atividades de disseminação única foi informar, capacitar e envolver uma multiplicidade de grupos interessados ​​em melhorar a saúde das mulheres com câncer. Esta análise destina-se a fornecer orientações práticas e de tradução para pesquisadores interessados ​​em disseminar sua pesquisa de maneiras inovadoras e para as partes interessadas interessadas em parcerias com pesquisadores no processo científico.

METODOLOGIA.

Estudo dos pais.

Buscamos disseminar nosso estudo de levantamento transversal em modo misto, testando as propriedades psicométricas de uma nova medida de auto advocacia entre sobreviventes de câncer de sexo feminino. (Autores A; Autores B) Este estudo de auto-advocacia levou três anos e meio para completar e foi baseado em trabalho piloto qualitativo descrevendo como os pacientes definem e promulga a auto advocacia. (Autores C) Nós recrutamos mulheres localmente da área ocidental da Pensilvânia, bem como a nível nacional, através de grupos de defesa relacionados ao câncer para completar uma bateria de questionários em papel ou on-line sobre sua história de saúde, sintomas relacionados ao câncer e ao tratamento, crenças sobre sua saúde, e traços de personalidade. Os critérios de inclusão para este estudo de pais incluíram ser feminino, tendo um diagnóstico prévio de um tipo invasivo de câncer e podendo ler e escrever em inglês. Os participantes (N = 347) foram recrutados a nível nacional e local a partir de duas pesquisas de pacientes e registros de tumores, clínicas de câncer e sete organizações de advocacia. Este estudo recebeu aprovação de assuntos humanos do Conselho de Revisão Institucional da Universidade de Pittsburgh.

Embora não tenhamos desenhado este estudo usando princípios de pesquisa participativa baseados na comunidade, recolhemos contribuições de mulheres com câncer, organizações de defesa e outras partes interessadas em todas as etapas do estudo de auto-advocacia. Queríamos conhecer as partes interessadas & # x02019; preferências e atitudes sobre a auto advocacia dos pacientes, o projeto e implementação do estudo e os possíveis usos de uma escala de auto-defesa que estávamos desenvolvendo. Encontramo-nos com líderes dos registros de pacientes, clínicas de câncer e organizações de defesa para discutir o estudo e potenciais colaborações antes, durante e após o estudo terminar. Como medida de confiança e colaboração, nós prometemos a cada um de nossos sites de recrutamento que compartilharíamos os resultados do estudo com eles e seus membros no final do estudo. A maioria das organizações solicitou o recebimento dos resultados do estudo para a educação de suas partes interessadas e organização.

Evento de divulgação.

À medida que concluímos o estudo de auto-advocacia, nossa equipe de pesquisa começou a considerar possíveis estratégias para divulgar de forma eficiente e frutífera nossos resultados a múltiplos grupos de interessados ​​leigos e científicos. Apesar de nosso estudo ser um estudo de pesquisa único, nos aproximamos dos nossos participantes durante o curso, quando ouvimos suas histórias de defender suas necessidades de saúde e pessoais. Mesmo que realizemos um trabalho piloto qualitativo explorando as experiências dos pacientes de auto-defesa, reconhecemos que este estudo estava expondo os pacientes # x02019; preocupações adicionais. Concluímos que os pacientes e os nossos stakeholders exigiam um fórum maior para discutir a auto-defesa dos pacientes. Queríamos fornecer espaço para discutir os desafios para que os pacientes falassem por seus valores e preferências e provocassem formas de desenvolver habilidades de auto advocacia em populações de pacientes vulneráveis.

Nosso principal evento de divulgação consistiu em uma grande reunião de divulgação de um dia e discussão em agosto de 2018. Convidamos participantes do estudo dos pais, indivíduos de nossos sites de recrutamento e membros da comunidade que estariam interessados ​​em promover a auto-defesa dos pacientes. Neste evento, apresentamos nossas descobertas do nosso estudo de pesquisa, encorajamos as partes interessadas a discutir os resultados entre si, e juntos desenvolveram estratégias para futuros estudos de pesquisa. Nós não pretendemos que este evento seja um estudo de pesquisa formal, mas queria capitalizar a oportunidade de receber comentários de várias partes interessadas e discutir coletivamente as etapas futuras do programa de pesquisa a longo prazo da nossa equipe de pesquisa.

Trinta e dois indivíduos participaram do evento de disseminação. Uma vez que nossos convites foram enviados para várias partes interessadas e grandes membros, não temos certeza de quantas pessoas receberam o convite. A Tabela 2 descreve os participantes do evento # x02019 com base nos comentários de treze pessoas que completaram o formulário de avaliação. Cada participante recebeu uma pasta com um programa do evento de disseminação, um breve resumo do Estudo de Auto-Advogada completo, uma cópia das perguntas de discussão em pequenos grupos que seriam feitas durante o evento de disseminação e papel para tomar notas. Voluntários da Escola de Enfermagem da Universidade de Pittsburgh estavam localizados na parte de trás da sala de eventos, oferecendo informações sobre saúde, exames de pressão arterial, materiais de promoção da saúde e recursos de saúde da comunidade. O evento também foi lançado na web para participantes que não eram de Pittsburgh ou que não puderam participar do evento pessoalmente.

O evento durou uma hora e meia e consistiu em almoço, uma breve apresentação descrevendo o objetivo e os resultados da Auto-Advocacia, e um testemunho de uma mulher com câncer de ovário descrevendo sua experiência de auto-defesa. Este testemunho pretendia fornecer uma descrição real do problema clínico e reforçar a necessidade de pesquisa para melhorar a auto advocacia entre mulheres com câncer.

Ao descrever o estudo, compartilhamos uma breve visão geral da escala final de auto-defesa e seus itens. Em vez de discutir as estatísticas de validade e confiabilidade que suportam a força psicométrica do instrumento, discutimos o significado da escala (o que cada subdimensão significava e como a escala poderia ser usada). Nós nos concentramos em dados relevantes para a nossa audiência para fornecer contexto e resultados do estudo para o público. Encorajamos perguntas do público e recebemos muitos comentários pensativos durante a apresentação.

Em seguida, os participantes explodiram em pequenos grupos para discutir as conclusões do estudo de auto-advocacia e as orientações futuras do estudo. Eles foram instruídos para que seus comentários fossem usados ​​pela equipe de pesquisa em sua elaboração de educação do paciente e futuros estudos de pesquisa. Portanto, os participantes foram encorajados a conversar abertamente e livremente, e que todas as perspectivas eram igualmente valiosas. Nós escrevemos as perguntas abaixo para obter feedback sobre os resultados do estudo e fazer um brainstorm para futuras pesquisas e apoio ao paciente:

Após as discussões em pequenos grupos, todo o grupo voltou a se reunir para compartilhar achados e discutir futuras prioridades de pesquisa. Os membros da equipe de pesquisa facilitaram a conversa dentro de cada grupo pequeno, tomaram notas para documentar a discussão e mantiveram um registro de sugestões. Os mesmos membros da equipe de pesquisa registraram notas da discussão em grande grupo.

Estrutura de divulgação.

Buscamos estruturas de divulgação que nos proporcionem um método estruturado para disseminar a pesquisa na comunidade e coletar feedback das partes interessadas. A Agência de Pesquisa e Qualidade em Saúde (AHRQ) criou a Ferramenta de Planejamento de Disseminação (Figura 1) em um esforço para apoiar os pesquisadores na disseminação efetiva de suas pesquisas. Nós selecionamos esse quadro porque seu primeiro passo refletiu o nosso estudo de pesquisa (por exemplo, resultados da pesquisa) e as etapas específicas e específicas do framework para criar um plano de divulgação robusto, incluindo a identificação e definição: (a) resultados da pesquisa e produtos, (b) usuários finais, (c) parceiros de disseminação, (d) comunicação, (e) avaliação e (f) plano de trabalho de divulgação. (Carpenter et al., 2018) Este quadro destina-se a servir de ferramenta para que os pesquisadores comercializem os aspectos únicos de sua pesquisa para esses usuários múltiplos.

Neste artigo, descrevemos a aplicação da estrutura AHRQ ao plano de divulgação do estudo de auto-advocacia. Usando as etapas da estrutura, explicamos nosso planejamento e implementação do evento de disseminação, e depois descrevemos os resultados deste evento, especialmente no que diz respeito ao envolvimento de pacientes e partes interessadas da comunidade em nosso programa de pesquisa.

Nós descrevemos nossos resultados de nossa estratégia de disseminação como eles se relacionam com a Estrutura de Divulgação AHRQ.

(A) Research Findings & # x00026; Produtos.

Criamos nossa estratégia de disseminação para envolver nossos parceiros em nosso processo de disseminação, apresentando os resultados do nosso estudo de auto-advocacia em nosso evento de disseminação e solicitando seus conselhos durante este evento. Nós propositadamente escolhemos não fazer suposições sobre como as partes interessadas interpretariam nossos achados de pesquisa. Em vez disso, nós quisemos especificamente suas orientações sobre como os resultados do estudo deveriam ser usados ​​tanto para informar futuros estudos quanto para desenvolver a educação do paciente que ensina habilidades de auto-advocacia para indivíduos com câncer.

O desenvolvimento de produtos de pesquisa para disseminação exigiu uma mudança de ponto de vista entre a equipe de pesquisa. Os achados científicos do nosso estudo foram relacionados às propriedades psicométricas da nossa nova escala de auto-defesa, e atualmente estamos relatando esses resultados em revistas científicas e em conferências científicas. Os participantes do estudo e os locais de recrutamento estavam cientes desses objetivos do estudo, mas presumimos que esses grupos e outras partes interessadas não científicas provavelmente não estarão interessados ​​nos resultados psicométricos da nossa escala. Portanto, alteramos nosso foco de disseminação e repensamos nossas descobertas na perspectiva dessas partes interessadas para apresentar nossos resultados mais interessantes e úteis para discussão no evento de disseminação.

(B) Usuários finais.

Dado nosso compromisso em compartilhar nossos resultados, fomos obrigados a compartilhar nossos resultados com nossos participantes do estudo e sites de recrutamento. Todos os participantes foram convidados a participar do evento de divulgação, pessoalmente ou virtualmente. Uma vez que o Self-Advocacy Study era um estudo nacional, sabíamos que participantes fora da área de Pittsburgh não seriam capazes de participar do evento, mas estariam interessados ​​nas descobertas do estudo. Encontramo-nos com líderes de cada um de nossos sites de recrutamento para discutir os achados do estudo, responder perguntas dos líderes do site e discutir potenciais parcerias em futuros estudos de pesquisa. Também estávamos interessados ​​em compartilhar nossos resultados com a ampla população de pacientes e as partes interessadas da comunidade local e nacional. A comunidade científica também foi um usuário final e um grupo para quem queríamos denunciar o rigor pelo qual realizamos o estudo e o significado dos resultados do estudo. A Tabela 1 descreve cada um de nossos usuários finais, seus níveis de participação no estudo dos pais e seus interesses nos resultados do estudo.

(C) Parceiros de Divulgação.

Dado os nossos diversos usuários finais, decidimos racionalizar o processo de disseminação ao ter pelo menos um evento em agosto de 2018 para convidar participantes do estudo, líderes do site de recrutamento e todas as partes interessadas a participar. O Instituto de Ciências Clínicas e Translacionais da Universidade de Pittsburgh (CTSI) foi um dos principais contribuintes, tanto como um dos nossos parceiros de recrutamento mais bem sucedidos através do Registro de Participantes da Pesquisa como fonte de financiamento para o nosso processo de disseminação.

(D) Comunicação.

Como tínhamos usuários finais tão amplos, queríamos que a comunicação de nossa estratégia de disseminação fosse atrativa para vários grupos. Comunicamos nosso evento de divulgação usando folhetos de papel e e-mail e incluímos uma descrição do evento enfatizando que a maioria dos debates sobre os resultados do estudo. Também incluímos um breve boletim de duas páginas descrevendo o estudo e destacando nossos resultados. Para incentivar outros que possam estar interessados ​​no estudo e no tópico a serem atendidos, pedimos a todos os nossos parceiros que compartilhem o convite para suas respectivas redes. Como o nosso estudo de pesquisa foi nacional, o nosso evento foi realizado localmente, convidamos as partes interessadas a participar do evento de divulgação usando videoconferência e / ou compartilhamos suas idéias sobre o estudo e as idéias sobre possíveis próximos passos com a equipe de pesquisa.

(E) Avaliação.

Imediatamente após o evento de divulgação, pedimos aos participantes que completem uma avaliação e ofereçam sugestões adicionais para nossa equipe de pesquisa. Esses formulários eram principalmente uma avaliação programática do evento e uma oportunidade adicional de feedback; nós originalmente não pretendemos projetar esses formulários como questionários qualitativos para fins de pesquisa. Também recebemos comentários de outros pacientes e partes interessadas que não foram capazes de participar do evento, mas que receberam nossos boletins e slides de apresentação.

(F) Plano de Trabalho de Divulgação.

Com base nos comentários de avaliação que recebemos no evento de divulgação, nossa equipe de pesquisa desenvolveu um plano de trabalho depois de destacar maneiras pelas quais poderíamos integrar os resultados do estudo de pesquisa com os resultados do evento de divulgação para informar os próximos passos neste programa de pesquisa sobre a auto-defesa dos pacientes. O plano consistia em (1) criar materiais de educação para pacientes para treinar pacientes para se auto-advogar e (2) projetar uma intervenção centrada no paciente para treinar pacientes para auto-defesa.

A Tabela 1 descreve os produtos e modos de disseminação para cada usuário final, juntamente com as considerações especiais da equipe de pesquisa e x x2020 para cada um. Esta tabela demonstra como os mesmos produtos podem ser compartilhados entre usuários finais.

Os resultados da avaliação da disseminação foram globalmente positivos, com os menores índices refletindo os participantes e # x02019; percepções de contribuir significativamente para o estudo (Tabela 3). Os participantes geralmente apreciaram o evento, sentiram que aprenderam sobre o estudo e podiam fazer perguntas e queriam se envolver na pesquisa em andamento. Enquanto os participantes que não participaram do estudo de autoavaliação não sentiram tão fortemente que contribuíram para o estudo de forma significativa, os participantes do estudo sentiram que contribuíram de forma significativa.

Nós transcrevemos as notas tomadas durante as pequenas e grandes discussões em grupo e organizamos as anotações em um único documento que a equipe de pesquisa agora pode fazer referência. A Tabela 4 inclui citações diretas das sugestões do participante sobre como a equipe de pesquisa deve disseminar os resultados do estudo. Tais informações ricas e descritivas registradas nas pequenas e grandes discussões em grupo não poderiam ter sido extraídas dos resultados do estudo de auto-advocacia. Além disso, os participantes notaram aprender uns dos outros e experiências e perspectivas do xx202019. Alguns participantes se encaixaram entre si para compartilhar recursos e informações relacionadas ao câncer e ao tratamento.

Desenvolvimento de Materiais para Educação de Pacientes & # x00026; Planejando futuros estudos de pesquisa.

Os comentários que recebemos durante o evento de divulgação forneceram orientação direta e direta sugerindo que desenvolvamos materiais de educação para pacientes para ajudar os pacientes a se auto-advogar. Por exemplo, os participantes foram inflexíveis sobre o papel do apoio social em serem fundamentais para que as mulheres pudessem defender por si mesmas. Portanto, a nossa educação do paciente (e as intervenções de pesquisa) devem abordar como uma mulher pode usar afetivamente seus sistemas de suporte disponíveis. Um participante que era um participante do estudo deu uma metáfora exemplar quando descreveu a interação entre auto-advocacia e apoio social: & # x0201c; It & # x02019; s como Uber & # x02018; Você está no comando de onde você está indo, mas você não tem que dirigir. & # x0201d; Esta metáfora é inestimável para a nossa equipe de pesquisa à medida que movemos nossas pesquisas para a concepção de intervenções. Com base no que essas partes interessadas sugeriram para a nossa educação para o paciente com auto-defesa, desenvolvemos um site (empolagem de pacientes ambulatoriais) que envolverá indivíduos com câncer ao compartilhar suas histórias de auto-advocacia, sugestões para outros que estão lutando para se auto-advogar e nossos resultados de estudos anteriores sobre auto-advocacia de pacientes. Continuaremos a utilizar este site para fornecer um espaço para indivíduos afetados por câncer que procuram conexão e força juntos.

Os comentários do evento de divulgação nos forneceram perspectivas críticas para nossa pesquisa futura. Recomendações específicas incluíram o momento ideal e a localização de intervenções futuras e tipos específicos de informação que seria atraente para as mulheres que lutam para auto-defender. Um participante instou-nos a projetar pesquisas com instruções claras e explícitas: & # x0201c; O que você [os pesquisadores] precisam é um guia para auto-advocacia com exemplos do mundo real. & # X0201d; Os participantes também recomendaram que as intervenções de auto-advocacia incluíam seus profissionais de saúde e recursos comunitários fora do sistema hospitalar. Uma mulher descreveu as dificuldades de auto-defesa com um câncer raro e acabou informando outros participantes sobre seu tipo de câncer e a falta de recursos disponíveis. Com base neste feedback, estamos atualmente projetando e testando uma intervenção de treinamento de auto advocacia que usa situações comuns que os pacientes em nossas discussões anteriores descreveram para demonstrar como e quando eles podem defender suas necessidades e prioridades.

Nossa equipe de estudo aprendeu várias lições importantes relevantes para qualquer pessoa que tentasse organizar um evento de disseminação de pesquisa centrado no paciente e na comunidade.

Preocupações práticas.

Os principais desafios e lições aprendidas durante a nossa divulgação incluem:

Os facilitadores do nosso plano de disseminação incluíram:

DISCUSSÃO.

Esta estratégia de disseminação simples e única representa uma alternativa para apenas divulgar pesquisas para a comunidade científica. Para os não pesquisadores, o envolvimento na estratégia de disseminação, como o descrito neste artigo, fornece um mecanismo de feedback para entender e criticar pesquisas destinadas a beneficiar usuários finais como eles. Para os pesquisadores, ter pacientes e interessados ​​interessados ​​e envolvidos em sua pesquisa oferecem vários benefícios tangíveis além de assegurar que nossos usuários finais tenham recebido os resultados de nossa pesquisa.

Os participantes da pesquisa querem e esperam informações confiáveis ​​e oportunas sobre os estudos aos quais eles concordam em participar. (Ondenge et al., 2018). Como estudo de pesquisa transversal, o estudo de autoavaliação ofereceu uma plataforma limitada e inflexível para compartilhar idéias e preocupações. Portanto, nossos participantes e partes interessadas apreciaram a saída que o evento de disseminação forneceu para suscitar preocupações ou oferecer sugestões sobre como melhorar a vida das mulheres com câncer. Recebemos feedback positivo dos participantes, indicando sua apreciação por estarem incluídos no esforço de pesquisa e no prazer do evento. Recomendamos que outros grupos de pesquisa usem a Ferramenta de Planejamento de Disseminação da AHRQ para considerar metodicamente seu processo de disseminação e como esse processo pode ser usado para estimular projetos centrados em invenções, pacientes e comunidades. Se desenvolvido de forma robusta, tais eventos de disseminação podem ser bem sucedidos tanto em melhorar o envolvimento do paciente quanto em tornar a pesquisa mais relevante para todas as partes interessadas. (Domecq et al., 2018)

Parcerias inovadoras entre a academia e as partes interessadas da comunidade demonstraram o potencial criativo de ter várias perspectivas e talentos reunidos. (Roy et al, 2018) A pesquisa como um programa sustentado em vez de episódios pontuados, esses parceiros podem fornecer recursos tangíveis (por exemplo, espaço, funcionários, voluntários e conexões) e atenção dedicada (por exemplo, colaborações futuras) incomparáveis ​​nas restrições da academia. Nossos parceiros durante o Self-Advocacy Study ajudaram na organização deste evento de disseminação e discutiram ativamente as futuras prioridades de pesquisa. Continuaremos a fomentar essas parcerias com o objetivo de trabalhar coletivamente para beneficiar essa população de pacientes.

Acima de tudo, os processos de disseminação podem criar confiança entre pesquisadores, pacientes e partes interessadas da comunidade. Numa época com o crescente escrutínio público do processo de pesquisa (Gauchat, 2018), tais parcerias são críticas. Ao garantir que todas as partes compreendam os outros & # x02019; prioridades e atividades, um esforço mais unificado pode ser orquestrado para resolver problemas críticos de cuidados de saúde. (Gradinger et al., 2018) Isso pode levar a parcerias sustentáveis ​​entre universitários e comunidades que podem facilitar uma colaboração saudável e contínua no desenvolvimento de questões de pesquisa compartilhadas, pesquisas científicas e disseminação de resultados. (Carney et al., 2018) Embora o nosso evento de divulgação tenha sido limitado no tempo e no espaço, convocou um grupo de partes interessadas em conjunto, fornecendo sucintamente e eficientemente os resultados do estudo e solicitando a participação dos interessados.

As limitações a este estudo incluem a baixa taxa de participação dos participantes entre os participantes da pesquisa e a baixa taxa de resposta para as formas de avaliação entre os participantes do evento de disseminação. Enquanto passamos um tempo considerável trabalhando com participantes do estudo e sites de recrutamento anunciando o evento e abordando possíveis obstáculos ao atendimento (por exemplo, tendo o webcast do evento, oferecendo almoço, validando estacionamento, etc.), ficamos limitados pela disponibilidade de participantes do estudo (recrutados de todo o país) para realizar o evento em um momento e local que podem não ter sido conveniente para todos os indivíduos, especialmente aqueles que tiveram problemas de saúde em curso. Encontrar formas criativas de envolver indivíduos com limitações de saúde e habilidades de viagem limitada assegurará que todas as partes interessadas possam contribuir durante esses eventos de disseminação. Além disso, nossos assistentes de pesquisa tentaram coletar formulários de avaliação de cada participante, mas muitos participantes deixaram o evento antes que o assistente de pesquisa pudesse lembrar os participantes para completar o formulário. Em estudos futuros, sugerimos realizar vários eventos em momentos e locais que não são complicados para a população de pacientes atendidas. Também realizaríamos um estudo formal pré-pós para avaliar aspectos específicos do evento de disseminação que impactaram as partes interessadas.

CONCLUSÃO.

A publicação de resultados de pesquisas em periódicos científicos é adequada, mas não inovadora. Encontrar novas maneiras de compartilhar resultados pode servir os interesses de pesquisadores, acadêmicos e participantes. Embora não acreditemos que a nossa divulgação do estudo de auto-advocacia foi excessivamente elaborada, o método pelo qual abordamos e conduzimos a nossa disseminação pode ser usado por outros pesquisadores e interessados ​​da comunidade interessados ​​em fazer parcerias de pesquisa mutuamente benéficas.

Agradecimentos.

NIH / NINR F31NR014066 (Hagan)

Instituto de Ciências Clínicas e Translacionais da Universidade de Pittsburgh UL1TR000005 (Hagan)

O Dr. Hagan, o Dr. Schmidt, a Sra. Ackison, a Sra. Murphy e a Sra. Jones declaram que não têm conflito de interesses.

Não a última palavra: estratégias de disseminação para pesquisas centradas no paciente em enfermagem.

Introdução.

Os resultados das pesquisas possuem valor para muitas partes interessadas, incluindo pesquisadores, populações de pacientes, organizações de defesa e grupos comunitários. O objetivo deste estudo é descrever o processo sistemático da nossa equipe de pesquisa em elaborar uma estratégia de disseminação para um estudo de pesquisa completo.

Metodologia.

Organizamos um evento de divulgação para alimentar os resultados do nosso estudo aos participantes e as partes interessadas e colecionamos feedback sobre o nosso estudo. Nós aplicamos a estrutura de divulgação da Agência de Pesquisa e Qualidade da Saúde para orientar o desenvolvimento do evento e reuniu os comentários dos participantes durante o evento.

Descrevemos a nossa estratégia de divulgação junto com os participantes e # x02019; comentários e sugestões para nossa pesquisa como um exemplo de uma maneira de projetar uma disseminação focada no paciente e na comunidade. Nós explicamos os detalhes de nossa estratégia de disseminação, incluindo (a) nosso processo de relatar um grande estudo de pesquisa em um evento de partes interessadas, (b) feedback dos interessados ​​coletados no evento, e (c) a tradução de feedback em nossa equipe de pesquisa; # x02019; pesquisa. Também descrevemos os desafios encontrados durante o processo de disseminação e formas de lidar com questões como logística, financiamento e pessoal.

Conclusões.

Esta análise fornece informações fundamentais e conselhos práticos para pesquisadores que procuram maneiras inovadoras de divulgar suas descobertas nas comunidades leigos e científicas.

INTRODUÇÃO.

O processo de disseminação da pesquisa é um aspecto crucial de qualquer estudo, especialmente a pesquisa que envolve diretamente a comunidade. (Chen et al., 2018) O conhecimento produzido através de investigações sistemáticas (a) informa o desenvolvimento do conhecimento no campo científico; (b) garante que os métodos, análises e conclusões do estudo sejam abertos ao escrutínio científico e público; e (c) garante que aqueles com um interesse adquirido na pesquisa compreendam e se beneficiem das descobertas do estudo. Os itens do Protocolo Padrão: Recomendações para Ensaios Interessantes (SPIRIT) estabelecem diretrizes para formas éticas de disseminação de pesquisa, afirmando que a divulgação e # x0201c honra as motivações altruístas de pacientes-sujeitos, & # x0201d; que os participantes são & # x0201c; têm direito a conhecer os resultados da pesquisa que a sua inscrição tornou possível; & # x0201d; e essa disseminação é & # x0201c, consistente com o dever de compartilhar novos conhecimentos. & # x0201d; (Mann, 2005) While peer-reviewed journals, professional conferences, and professional communities remain excellent mechanisms by which to deliver results to the scientific community, researchers should capitalize on the opportunity to bolster their professional objectives by distributing research results widely to all stakeholders. (Chambers and Azrin, 2018)

As nurse researchers, we must acknowledge the value of our research across multiple audiences. (Timmons, 2018) We must strive to appreciate the potential impacts of our research for study participants, patient populations, community organizations, and policy organizations alike. Our scientific research may be valuable in ways not originally intended by our scientific question, and the dissemination process and planning of future research is an ideal time in which to engage these stakeholders. (Anderson et al., 2018)

Our research team recently experienced such a crossroads at the end of a national, cross-sectional study among adult females with a history of cancer. Our parent study aimed to develop a measure of patient self-advocacy to assess their ability to get their needs met in the face of challenge. We believe that this concept is crucial in the current climate of ongoing health inequities (Adler et al., 2018; Lyratzopoulos et al., 2018), increasingly complex medical care (Collins et al., 2009; Reyna et al., 2018), and vested interests in promoting patient engagement in their health care decisions (Frank et al., 2018). We decided to disseminate the results of our study not only to our participants, but to wider community audiences who had vested interests in discussing our results and imaging potential future steps. In this way, we could both share our results and build community with like-minded individuals and community partners interested in addressing the need for patient self-advocacy.

The purpose of our one-time dissemination strategy and activities was to inform, empower, and engage a multitude of groups interested in improving the health of women with cancer. This analysis is meant to give practical and translational guidance to researchers who are interested in disseminating their research in novel ways, and to stakeholders who are interested in partnering with researchers in the scientific process.

METHODOLOGY.

Parent Study.

We sought to disseminate our mixed-mode, cross-sectional survey study testing the psychometric properties of a new measure of self-advocacy among female cancer survivors. (Authors A; Authors B) This Self-Advocacy Study took three and a half years to complete and was based on qualitative pilot work describing how patients define and enact self-advocacy. (Authors C) We recruited women locally from the western Pennsylvania area as well as nationally through cancer-related advocacy groups to complete a battery of paper or online questionnaires about their health history, cancer - and treatment-related symptoms, beliefs about their health, and personality traits. Inclusion criteria for this parent study included being female, having a previous diagnosis of an invasive type of cancer, and being able to read and write in English. Participants ( N =347) were recruited nationally and locally from two patient research and tumor registries, cancer clinics, and seven advocacy organizations. This study received human subjects approval from the University of Pittsburgh Institutional Review Board.

While we did not design this study using community-based participatory research principles, we collected input from women with cancer, advocacy organizations, and other stakeholders at all stages of the Self-Advocacy Study. We wanted to know stakeholders’ preferences and attitudes about patient self-advocacy, the design and implementation of the study, and potential uses of a self-advocacy scale we were developing. We met with leaders from the patient registries, cancer clinics, and advocacy organizations to discuss the study and potential collaborations before, during, and after the study ended. As a measure of trust-building and collaboration, we promised each of our recruitment sites that we would share the results of the study with them and their membership at the end of the study. Most organizations requested receiving the results of the study for education of their stakeholders and organization.

Dissemination Event.

As we completed the Self-Advocacy Study, our research team began to consider possible strategies to efficiently and fruitfully disseminate our results to multiple groups of lay and scientific stakeholders. Despite our study being a one-time survey study, we grew close to our participants during the course of the study as we heard their stories of advocating for their healthcare and personal needs. Even though we conducted qualitative pilot work exploring patient experiences of self-advocacy, we recognized that this study was exposing patients’ additional concerns. We concluded that patients and our stakeholders required a larger forum in which to discuss patient self-advocacy. We wanted to provide space to discuss the challenges to having patients speak up for their values and preferences and brainstorm ways to build self-advocacy skills in vulnerable patient populations.

Our main dissemination event consisted of a large one-day dissemination meeting and discussion in August 2018. We invited participants from the parent study, individuals from our recruitment sites, and community members who would be interested in promoting patient self-advocacy. At this event, we presented our findings of our research study, encouraged stakeholders to discuss the findings with each other, and together developed strategies for future research studies. We did not intend for this event to be a formal research study, but did want to capitalize on the opportunity to receive feedback from multiple stakeholders and collectively discuss future steps for our research team’s long-term program of research.

Thirty-two individuals attended the dissemination event. Since our invitations were sent to multiple stakeholders and large memberships, we are unsure of how many individuals received the invitation. Table 2 describes the event’s attendees based on feedback from thirteen people who completed the evaluation form. Each attendee was given a folder with a program of the dissemination event, a brief summary of the completed Self-Advocacy Study, a copy of the small group discussion questions that would be asked during the dissemination event, and paper to take notes. Volunteers from the University of Pittsburgh School of Nursing were located in the back of the event room offering health information, blood pressure screenings, health promotion materials, and community health resources. The event was also web-cast for attendees who were not from Pittsburgh or who were unable to attend the event in-person.

The event lasted an hour and a half and consisted of lunch, a brief presentation describing the Self-Advocacy Study’s purpose and results, and a testimonial from a woman with ovarian cancer describing her experience of self-advocacy. This testimony was intended to provide a real-life description of the clinical problem and reinforce the need for research to improve self-advocacy among women with cancer.

While describing the study, we shared a brief overview of the final self-advocacy scale and its items. Rather than discuss the validity and reliability statistics supporting the psychometric strength of the instrument, we discussed the meaning of the scale (what each sub-dimension meant and how the scale could be used). We focused on data that was relevant to our audience to provide context and results of the study to our audience. We encouraged questions from the audience and received many thoughtful comments throughout the presentation.

Next, attendees broke out into small groups to discuss the Self-Advocacy Study’s findings and future study directions. They were instructed that their feedback would be used by the research team in their making of patient education and future research studies. Therefore, attendees were encouraged to talk openly and freely, and that all perspectives were equally valuable. We wrote the questions below to elicit feedback on study results and brainstorm future research and patient support:

After the small group discussions, the entire group reconvened to share findings and discuss future research priorities. Research team members facilitated the conversation within each small group, took notes to document the discussion, and kept a log of suggestions. The same research team members recorded notes from the large group discussion.

Dissemination Framework.

We searched for dissemination frameworks that would provide us with a structured method for disseminating research into the community and collecting feedback from stakeholders. The Agency for Healthcare Research and Quality (AHRQ) created the Dissemination Planning Tool ( Figure 1 ) in an effort to support researchers in effectively disseminating their research. We selected this framework because its first step reflected our research study’s status (e. g., research findings) and the framework’s specific, targeted steps for creating a robust dissemination plan including identifying and defining: (a) research findings and products, (b) end-users, (c) dissemination partners, (d) communication, (e) evaluation, and (f) dissemination work plan. (Carpenter et al., 2018) This framework is intended to serve as a tool for researchers to market the unique aspects of their research to those multiple end-users.

In this article, we describe our application of the AHRQ framework to the Self-Advocacy Study’s dissemination plan. Using the steps of the framework, we will expound on our planning and implementation of the dissemination event, and then describe the results of this event especially as they pertain to involving patients and community stakeholders in our research program.

We describe our results of our dissemination strategy as they relate to the AHRQ Dissemination Framework.

(A) Research Findings & Produtos.

We designed our dissemination strategy to involve our partners in our dissemination process by presenting them with the results of our Self-Advocacy Study at our dissemination event and asking for their advice during this event. We purposefully chose not to make assumptions about how stakeholders would interpret our research findings. Rather, we specifically wanted their guidance on how the study results should be used to both inform future studies and develop patient education teaching self-advocacy skills to individuals with cancer.

Developing research products for dissemination required a shift in viewpoint among the research team. The scientific findings of our study were related to the psychometric properties of our new self-advocacy scale, and we are currently reporting these results in scientific journals and at scientific conferences. Study participants and recruitment sites were aware of these aims of the study, but we presumed these groups and other non-scientific stakeholders would likely not be interested in our scale’s psychometric results. Therefore, we altered our dissemination focus and rethought our findings from the perspective of these stakeholders to present our most interesting and useful results for discussion at the dissemination event.

(B) End-users.

Given our commitment to share our results, we were obliged to share our results with our study participants and recruitment sites. All participants were invited to attend the dissemination event either in-person or virtually. Since the Self-Advocacy Study was a national study, we knew that participants outside of the Pittsburgh area would not be able to attend the event, but would be interested in the study’s findings. We met with leaders of each of our recruitment sites to discuss the study findings, answer questions from the site leaders, and discuss potential partnerships during future research studies. We were also interested in sharing our results with the broader patient population and local and national community stakeholders. The scientific community was also an end-user, and a group to whom we wanted to report the rigor by which we undertook the study and the significance of the study results. Table 1 describes each of our end-users, their levels of participation in the parent study, and their interests in the results of the study.

(C) Dissemination Partners.

Given our diverse end-users, we decided to streamline dissemination process by having at least one event in August 2018 that we could invite study participants, recruitment site leaders, and all interested stakeholders to attend. The University of Pittsburgh Clinical and Translational Science Institute (CTSI) was a major contributor, both as one of our most successful recruitment partner through their Research Participant Registry and as a source of funding for our dissemination process.

(D) Communication.

Since we had such broad end-users, we wanted the communication of our dissemination strategy to appeal to multiple groups. We communicated our dissemination event using paper and email brochures and included a description of the event emphasizing that most of the discussing the study results. We also included a brief, two-page bulletin describing the study and highlighting our results. To encourage others who may be interested in the study and topic to attend, we asked all of our partners to share the invitation to their respective networks. Because our research study was national but our event was held locally, we invited interested parties to attend the dissemination event using video-conference and/or to privately share their thoughts about the study and ideas about potential next steps with the research team.

(E) Evaluation.

Immediately after the dissemination event, we asked attendees to complete an evaluation and offer additional suggestions to our research team. These forms were primarily a programmatic evaluation of the event and additional opportunity for feedback; we did not originally intend to design these forms as qualitative questionnaires for research purposes. We also received feedback from other patients and stakeholders who were not able to attend the event, but who had received our bulletins and presentation slides.

(F) Dissemination Work Plan.

Based on the evaluation feedback we received at the dissemination event, our research team developed a work plan after highlighting ways in which we could integrate the results of the research study with the results from the dissemination event to inform our next steps in this program of research regarding patient self-advocacy. The plan consisted of (1) creating patient education materials to train patients to self-advocate and (2) designing a patient-centered intervention to train patients to self-advocate.

Table 1 describes the products and modes of dissemination for each end-user along with the research team’s special considerations for each. This table demonstrates how the same products can be shared across end-users.

Results of the dissemination evaluation were overall positive, with the lowest scores reflecting attendees’ perceptions of meaningfully contributing to the study ( Table 3 ). Attendees generally enjoyed the event, felt they learned about the study and could ask questions, and wanted to stay involved in the research going forward. While attendees who had not participated in the Self-Advocacy Study did not feel as strongly that they contributed to the study in a meaningful way, study participants did feel like they contributed meaningfully.

We transcribed the notes taken during the small and large group discussions and then organized the notes into a single document which the research team can now reference. Table 4 includes direct quotations of attendee suggestions on how the research team should disseminate study findings. Such rich, descriptive insights recorded in the small and large group discussions could not have been abstracted from the results of the Self-Advocacy Study. Moreover, attendees noted learning from each other’s experiences and perspectives. Some attendees networked with each other to share resources and information related to their cancer and treatment.

Development of Patient Education Materials & Planning for Future Research Studies.

The feedback we received during the dissemination event provided keen, direct guidance suggesting we develop patient education materials to help patients self-advocate. For example, attendees were adamant about the role of social support in being foundational to women being able to advocate for themselves. Therefore, our patient education (and research interventions) must address how a woman can affectively use her available support systems. One attendee who was a study participant gave an exemplary metaphor when she described the interplay between self-advocacy and social support: “It’s like Uber ‘ you are in charge of where you are going, but you don’t always have to drive.” This metaphor is invaluable for our research team as we move our research into designing interventions. Based on what these stakeholders suggested for our self-advocacy patient education, we developed a website (empowercancerpatients) that will engage individuals with cancer in sharing their stories of self-advocacy, hints for others who are struggling to self-advocate, and our results from previous studies regarding patient self-advocacy. We will continue to use this website to provide a space for individuals affected by cancer looking for connection and strength together.

Feedback from the dissemination event provided us with critical perspectives for our future research. Specific recommendations included the ideal timing and location of future interventions and specific types of information that would be appealing to women who struggle to self-advocate. One attendee urged us to design research with clear, explicit instructions: “What you [the researchers] need is a primer for self-advocacy with real world examples.” Attendees also recommended having self-advocacy interventions include their healthcare providers and community resources outside of the hospital system. One woman described the difficulties of self-advocating with a rare cancer, and ended up informing other attendees about her type of cancer and the lack of available resources. Based on this feedback, we are currently designing and pilot testing a self-advocacy training intervention that uses common situations patients in our previous discussions have described to demonstrate how and when they can advocate for their needs and priorities.

Our study team learned several key lessons relevant to anyone attempting to organize a patient - and community-centered research dissemination event.

Practical Concerns.

Key challenges and lessons learned during our dissemination included:

Facilitators of our dissemination plan included:

DISCUSSION.

This simple, one-time dissemination strategy represents an alternative to only disseminating research for the scientific community. For non-researchers, involvement in dissemination strategy like the one described in this article provide a feedback mechanism by which to understand and critique research intended to benefit end-users like themselves. For researchers, having patients and stakeholders interested and involved in your research offers several tangible benefits in addition to ensuring that our end-users have received the results of our research.

Research participants want and expect trustworthy, timely information about the studies to which they consent to participate. (Ondenge et al., 2018) As a cross-sectional survey study, the Self-Advocacy Study offered a limited, inflexible platform for sharing ideas and concerns. Therefore, our participants and stakeholders appreciated the outlet that the dissemination event provided to raise concerns or offer suggestions about how to improve the lives of women with cancer. We received positive feedback from attendees indicating their appreciation for being included in the research endeavor and enjoyment of the event. We recommend other research groups use the AHRQ Dissemination Planning Tool to methodically consider their dissemination process and how this process can be used to spur inventive, patient - and community-stakeholder centered projects. If robustly designed, such dissemination events can succeed at both improving patient engagement and making research more relevant to all stakeholders. (Domecq et al., 2018)

Innovative partnerships between academia and community stakeholders have demonstrated the creative potential of having multiple perspectives and talents brought together. (Roy et al, 2018) Viewing research as a sustained program rather than punctuated episodes, such partners can provide tangible resources (e. g. space, staff, volunteers, and connections) and dedicated attentiveness (e. g. future collaborations) unmatched within the constraints of academia. Our partners during the Self-Advocacy Study assisted in organizing this dissemination event and actively discussed future research priorities. We will continue to nurture these partnerships for the purpose of collectively working to benefit this patient population.

Above all, dissemination processes can build trust between researchers, patients, and community stakeholders. In an era with growing public scrutiny of the research process, (Gauchat, 2018) such partnerships are critical. By ensuring all parties understand the others’ priorities and activities, a more unified effort can be orchestrated to address critical health care problems. (Gradinger et al., 2018) This may lead to sustainable academic-community partnerships that can facilitate a healthy, ongoing collaboration of developing shared research questions, scientific investigations, and result dissemination. (Carney et al., 2018) Even though our dissemination event was limited in time and space, it convened a group of stakeholders together to succinctly and efficiently provide study results and request stakeholder input.

Limitations to this study include the low participant turn-out rate among research participants and the low response rate for evaluation forms among attendees of the dissemination event. While we spent considerable time working with study participants and recruitment sites advertising the event and addressing possible obstacles to attendance (e. g., having the event webcast, offering lunch, validating parking, etc.), we were limited by the availability of study participants (recruited from around the country) to hold the event at a time and location that may not have been convenient for all individuals especially those who had ongoing health issues. Finding creative ways to involve individuals with health limitations and limited travel abilities will ensure all stakeholders are able to contribute during these dissemination events. Moreover, our research assistants attempted to collect evaluation forms from each attendee, but many attendees left the event prior to the research assistant being able to remind attendees to complete the form. In future studies, we would suggest holding multiple events at times and locations that are not cumbersome to the patient population being served. We would also conduct a formal pre-post study to evaluate specific aspects of the dissemination event that impacted stakeholders.

CONCLUSÃO.

Publication of research findings within scientific journals is adequate but not innovative. Finding novel ways to share findings can serve the interests of researchers, academics and participants. While we do not believe that our dissemination of the Self-Advocacy Study was overly elaborate, the method by which we approached and conducted our dissemination can be used by other researchers and community stakeholders interested in making mutually beneficial research partnerships.

Agradecimentos.

NIH/NINR F31NR014066 (Hagan)

University of Pittsburgh Clinical and Translational Science Institute UL1TR000005 (Hagan)

Dr. Hagan, Dr. Schmidt, Ms. Ackison, Ms. Murphy, and Ms. Jones declare that they have no conflict of interest.

Nursing Research and Practice.

Indexed in Web of Science.

Views 3,571 Citations 18 ePub 38 PDF 1,243.

Dissemination and Implementation Research Funded by the US National Institutes of Health, 2005‘2018.

UNM College of Nursing, 1 University of New Mexico MSC 095350, Albuquerque, NM 87131-0001, USA.

Received 29 November 2018; Accepted 22 January 2018.

Academic Editor: Deborah Vincent.

Copyright © 2018 Mindy Tinkle et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Dissemination and implementation (D&I) research is a growing area of science focused on overcoming the science-practice gap by targeting the distribution of information and adoption of interventions to public health and clinical practice settings. This study examined D&I research projects funded under specific program announcements by the US National Institutes of Health (NIH) from 2005 to 2018. The authors described the projects’ D&I strategies, funding by NIH Institute, focus, characteristics of the principal investigators (PIs) and their organizations, and other aspects of study design and setting. Results showed 46 R01s, 6 R03s, and 24 R21s funded totaling $79.2 million. The top funders were the National Cancer Institute and the National Institute of Mental Health, together providing 61% of funding. The majority of PIs were affiliated with Schools of Medicine or large, nonprofit research organizations and think tanks. Only 4% of projects were to PIs with appointments at Schools of Nursing, with 7% of the funding. The most commonly funded projects across all of the studies focused on cancer control and screening, substance abuse prevention and treatment, and mental health services. Typically implemented in community and organizational settings, D&I research provides an excellent opportunity for team science, including nurse scientists and interdisciplinary collaborators.

1. Introdução.

The existence of a gap between science and practice is universally recognized. Clinical research findings and clinical practice guidelines that have promise to improve health move very slowly from the research setting into clinical practice, and many of these interventions never reach those who could benefit. It is estimated that it takes an average of 17 years to translate 14% of original research into benefit for patients and an average of 9 years for interventions recommended as evidence-based practices to be fully adopted [1, 2].

Dissemination and implementation (D&I) research is a growing area of science focused on overcoming this science-practice gap. Research on dissemination addresses the targeted distribution or spread of information and interventions to specific public health and clinical practice settings. Implementation science is the study of methods to promote the integration of evidence and change practice patterns and health care policy within real-world public health and clinical service settings [3]. Using the language from models depicting the continuum of translational science from bench to practice and health impact, D&I research is often depicted as “T3” and “T4” science [4, 5].

Although the research enterprise has generated a rich supply of evidence-based interventions, programs, and services, knowledge about how to best disseminate and implement these evidence-based practices has not kept pace. Evidence is needed for how these interventions can be “scaled up,” what contextual factors and conditions are pivotal to successful adoption, and how to give added attention to issues of external validity, fidelity, and sustainability. D&I nurse researchers and practitioners are important players in advancing the goals of this science to improve patient and system outcomes [6‘8].

Evidence does suggest that passive approaches to dissemination, such as the publication of consensus statements in professional journals, mass mailings, and untargeted presentations to heterogeneous groups, are ineffective strategies to achieve significant uptake and practice change [9, 10]. Targeted and active dissemination strategies, such as hands-on technical assistance, replication guides, point-of-decision prompts, and training workshops with hands-on experience, are more promising [11]. Implementation strategies have been described as either “top down” or “bottom up” and include a range of approaches, such as stakeholder relationship building and communication, continuous quality management, audit and feedback, service delivery practices and training, and local consensus building [12]. These D&I strategies are often directed at multiple levels and in different combinations of levels, including patient, provider, organizational, and policy. Features of organizations (e. g., hospitals, clinics, workplaces, and schools), such as organizational leadership and climate, managerial relations, and absorptive capacity, are increasingly seen as key intervention targets to facilitate D&I efforts [13].

Although D&I research in health is a relatively young science, advances in both the rigor and ambitiousness of studies over the past decade reflect robust growth in the field [14]. Many conceptual frameworks for guiding D&I research, such as the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) model [15], have been developed and are being tested. Common themes in these frameworks include a heavy emphasis on context, fidelity adaptation and quality of implementation, multilevel targets, and engagement of the target population in partnership research [16]. Research is also focused on developing and validating sound measures important for D&I research, such as measures for key organizational-level constructs [13]. In addition, comparative effectiveness studies of competing active D&I strategies are beginning to appear in the literature, including evaluation of cost [17]. Study designs best suited to answer questions in D&I research are also developing, including a focus on mixed-methods designs and system science approaches [18].

Federal funding for D&I research has traditionally been very small, particularly in relation to the funding available for discovery research. Although the portfolio of D&I research at the National Institutes of Health (NIH) is growing, funding for this science remains extremely small compared with the $30 billion each year that the NIH spends on basic and efficacy research [19]. In 2005, a trans-NIH committee (including the National Institute of Nursing Research [NINR]) issued the first of a set of multi-institute program announcements to stimulate research in this area. These program announcements have been continuously reissued over the past 8 years and include the Research Project Grant (R01) and Small Grant (R03 and R21) mechanisms. The purpose of this funding opportunity is to support innovative approaches to identifying, understanding, and overcoming barriers to the adaptation, adoption, and integration of evidence-based interventions and guidelines that previous research has shown to be efficacious and effective, but where uptake to date has been limited or significantly delayed [20].

A total of 76 D&I research projects have been funded by the NIH through these multi-institute program announcements from 2005 to 2018. Research findings from some of these NIH-funded projects have been presented at the NIH Annual Conference on the Science of Dissemination and Implementation and published in the literature. However, no summary of these funded projects examining the body of work in this research portfolio is available.

The purpose of this study was to examine the D&I research projects funded through these program announcements from 2005 to 2018 in terms of describing what has been funded by which NIH Institutes, the dollars invested, characteristics of the principal investigators (PIs) and their organizations, and an assessment of the focus of these projects, the D&I strategies employed, and other aspects of study design and setting. Although the studies funded through these Program Announcements Reviewed (PARs) do not include all the possible D&I-related research projects funded by NIH over this period, this study was confined to these projects because they represent outcomes of a sustained, multi-institute initiative to stimulate development of D&I science. This paper presents a description of these funded projects and suggests opportunities for nurse scientists in D&I research.

To accomplish the aims of this study, the abstracts from all projects funded by the NIH under the multi-institute “Dissemination and Implementation Research in Health” (PAR-06-039, PAR-06-520, PAR-06-521, PAR-07-086, PAR-10-038, PAR-10-039, and PAR-10-040) were accessed through the NIH Research Portfolio Online Reporting Tools (RePORT) [21]. Projects funded under an earlier program announcement specific to mental health (PAR-02-131, “Dissemination and Implementation Research in Mental Health”) were excluded from this review. The paper process is outlined in Figure 1.

The narrative abstracts for all 76 projects were independently examined by two reviewers to extract information on the following areas: funding institute, award amount, project topic, and characteristics of the PI and awardee organization. The 46 R01 projects were further independently examined by 3 reviewers for conceptual frameworks, D&I strategies, level of measurement, and study design and setting. In cases of discrepancies in recorded findings, an iterative process of abstract review was used until 100% agreement among the reviewers was reached. The small grant mechanisms (i. e., R03s and R21s) were excluded from the analysis of the R01s in this examination because the smaller projects were mainly needs assessments, small pilots, and instrument development studies and were generally not intervention research.

Summary tables and figures were constructed, using type of funding mechanism (R01, R03, R21) for initial categorization of abstracts. The quantitative results (e. g., frequencies and means) and qualitative results (e. g., project topic and D&I strategy) provided a foundation for drawing conclusions about the funded D&I research and discussing the implications for nursing research.

3.1. Overview of the Projects.

A total of 76 project abstracts were reviewed, representing 46 R01s, six R03s, and 24 R21s funded by the NIH, totaling $79.2 million during the 2005 to 2018 period (Table 1). Nine NIH Institutes and Centers funded these awards, with the National Cancer Institute (NCI) and the National Institute of Mental Health (NIMH) funding 58% of the total number of projects, which accounted for 61% of the total funding. The NINR awarded 6% of the projects: three R01s, one R03, and one R21, totaling $4.9 million. The NIH Fogarty International Center joined the program announcements in 2009 and funded several grants focused on global health. Figure 2 depicts the funding for the R01 awards, again, with the majority of the larger research project grants funded by the NCI and the NIMH.

The majority of PIs for these funded projects were affiliated with Schools of Medicine and large, nonprofit research organizations and think tanks, such as Rand and Kaiser, and these institutions received 58% of the total funding (Table 2). Schools of Public Health accounted for about 18% and 19% of the PI affiliations and the total funding, respectively. Only about 4% of the funded projects were to PIs at Schools of Nursing, making up about 7% of the total funding. The universities and research organizations funded for these projects were more heavily clustered in the West and East coastal states and the East North Central states (Figure 3). The institutions in the West and East coastal states received about two thirds of the total funding for all of the projects.

The topic focus for the 76 projects funded over the past 8 years reflects a broad spectrum of areas, consistent with the missions of the sponsoring NIH Institutes and Centers. The projects included dissemination and implementation of evidence-based health behavior interventions and research-based guidelines, programs, and services for prevention, diagnosis, and clinical management in public health, clinical settings, and the public policy arena. As shown in Figure 4, the most commonly funded projects were cancer control and screening, substance abuse prevention and treatment, and mental health services.

Many of the projects involved scaling up interventions found to be effective in smaller trials or adapting an evidence-based intervention for implementation in a new setting. For example, one R01 project [22] studied the dissemination and implementation of an evidence-based weight-management program for veterans called MOVE! by scaling up this program to reach a broad population of veterans across the Veterans Affairs national network of medical centers and community clinics. Another R01 project [23] examined the impact of adapting and delivering an evidence-based organizational implementation strategy called Availability, Responsiveness, and Continuity (ARC), originally developed in Tennessee, on improving mental health services for youth in community-based agencies in a Midwest community.

3.2. A Focus on the R01 Projects.

A more in-depth analysis of the R01 projects was conducted to better understand the intervention projects that move the science beyond the pilot phase. This analysis included an examination of the theories and frameworks, D&I strategies, levels of measurement, and study design and setting.

3.2.1. Theories and Frameworks.

Among the 46 R01 projects, the range of orientation to a theory or model varied widely (Table 3). The majority of the R01-funded projects had no mention of a theoretical framework or guiding model (

). Of the frameworks mentioned, the RE-AIM framework for evaluating interventions was most commonly utilized (

), closely followed by Rogers’ Diffusion of Innovations model (

) [24]. One study combined Rogers’ Diffusion of Innovations model and the RE-AIM framework (

). Nine studies utilized frameworks that had specific relevance for their project, such as grants that proposed the use of behavioral interventions and had a related behavioral model supporting the intervention. For example, a project titled “Dissemination of a Theory-Based Bone Health Program in Online Communities” [25] utilized social cognitive theory in designing an online bone-health intervention targeting adults aged 50 years and older.

3.2.2. D&I Strategies.

Of the 46 R01 projects, 29 had one D&I strategy and 15 had two D&I strategies, for a total of 59 D&I strategies used (Table 4). In two of the abstracts, the strategies were either unclear or were not stated. Examining the D&I strategies, a majority (78%) of studies utilized active dissemination approaches, whereas 10% used passive dissemination approaches, and the remaining 12% used an evaluative approach (i. e., evaluation of an existing program). Many studies utilized a combination of mixed active, passive, and/or evaluative strategies. The range of active approaches varied; for example, one study adapted patient navigation strategies to Chinese women in Chicago [26] in an intervention that modified tailored patient navigation to improve cancer screening rates in this low-income and underserved population. The dissemination approach proposed in this study incorporated patient navigators as providers of cancer control education and screening in active teaching roles within the Asian immigrant population and was categorized in our study as hands-on technical assistance and training, two active D&I strategies. An example of evaluation of dissemination was demonstrated in a study examining smoking cessation and knowledge integration with people who use tobacco control quitlines [27], in which participant social network analysis was conducted to provide insight about potential dissemination approaches in the future.

3.2.3. Levels of Measurement.

These R01 projects used five levels of measurement in evaluating the intervention outcomes: policy level, patient level, provider level, organizational level, and multilevel outcome measures. Multilevel outcome measures involved different combinations of the other four levels, such as a combination of organizational and provider measures or an intervention study that measured both provider and patient outcomes. Multilevel outcome measures were the most common means of evaluation for these R01 projects (47%), whereas the most frequent individual outcome measure was at the organizational level (22%; see Figure 5).

One example of a research study using a multilevel outcomes methodology [28] involved a colorectal screening intervention replicated by a community health services agency for Asian American patients. Intervention outcomes were measured using a combination multilevel evaluation at both the organizational (i. e., the agency) and individual levels by collecting data from individual providers at the intervention community agencies.

An example of program evaluation using a single level of outcome measure [29] involved a 5-year project that examined the transportation, implementation, and sustainability of a computer-assisted cognitive-behavioral treatment (CACBT) for young children’s anxiety in elementary schools. In this multisite study, each school provided at least four counselors, social workers, school psychologists, or teachers who could implement the intervention. The outcome of the project was measured in terms of whether or not the school personnel increased the use of the CACBT program and increased identification of elementary school students with distressing anxiety through use of the Behavioral Assessment System for Children, Second Edition, Teacher Rating Scale.

3.2.4. Study Design and Setting.

Many of these 46 R01 projects had multiple aims and multiple stages as part of the study intervention. The project designs included randomized controlled trials, quasiexperimental designs, case studies, survey research, community-based participatory approaches, and system science designs, such as social network analysis.

Many projects utilized mixed-methods designs, using quantitative methods to measure outcomes and qualitative methods to describe processes or expand the depth of understanding. For example, one project [30] involved three separate stages, with the first stage using two in-depth case studies of model substance abuse treatment programs serving the substance abuser group in the community. The second stage used a quantitative telephone survey approach to collect data from the directors of all 480 substance abuse treatment programs serving substance abusers in their respective communities. The final stage involved a qualitative approach using in-depth case studies of 12 of these 480 substance abuse treatment programs from the stage-two telephone interviews. As a result, the researchers planned to collect, analyze, and report both quantitative and qualitative data gathered during the three stages of the project [30].

When these R01 projects were grouped by predominant design, 43% of the studies used a quasiexperimental design, and 24% used randomized controlled trials. Together, these two designs accounted for two out of three designs among the R01 studies (Table 5). The project settings were also diverse and included rural and urban primary care and specialty care practices (

), state government and international health settings (

), community health agencies ( ), hospitals ( ), online social networking ( ), schools ( ), large health care systems ( ), churches ( ), and worksites ( ). See Table 6 for a list of the 76 abstracts used in the study.

4. Discussion.

This review of abstracts was conducted to describe the R01, R03, and R21 projects funded under the NIH program announcements for D&I research from 2005 to 2018. Further analysis was performed for the R01 studies, which were intended to move the science beyond the pilot phase.

Review of these abstracts demonstrated a robust set of projects that reflect a growing and evolving area of science. NCI and NIMH were the major funders for the projects, which is indicative of their long history of working to advance this field. Each of these institutes has designated organizational D&I units and program officers dedicated to broadly stimulating this science. The PIs for these projects represented an array of disciplines, and the topical focus of the projects was equally diverse, illustrating the interdisciplinary nature of the D&I research community. Only a small proportion of PIs for these projects were from Schools of Nursing. Likewise, as illustrated in Figure 3, rural and western states were underrepresented among the funded projects.

When a theory or framework was present, it referred to one that is commonly applied in D&I research in the context of health, particularly the RE-AIM [15] and Diffusion of Innovations [24] models. Other commonly used models included those that supported individually focused behavioral interventions, such as cognitive behavioral theory. Consistent with the literature that demonstrates that active D&I strategies are more effective [12], most of the projects relied on active approaches, such as training and technical assistance.

Assessment of the outcomes and fidelity of the dissemination and implementation of new preventive practices, guidelines, or programs in these projects were most often measured at multiple levels, such as the individual patient, the provider, and the organization. This multimodal approach is characteristic of more recent D&I research and may reflect an evolving use of systems thinking for D&I in terms of understanding how actors and organizations influence each other within a whole [31, 32]. The predominant study designs used in these projects included quasiexperimental and randomized clinical trials. Many of the projects used mixed methods, with a third of them including both quantitative and qualitative components. Mixed methods are particularly useful in generating data from multiple levels and many stakeholders and may be particularly suited to answer the complex questions in D&I research [18, 33].

Many of these funded projects can be considered first-generation D&I research. What areas of knowledge development suggested from these studies and other experts should be promoted to move the field forward in terms of the next generation of D&I research? Developing a standard and consistent terminology for D&I research is one critical area requiring careful attention [33]. Additional theory development and testing are needed to better understand the relationships among the complex array of factors required for successful dissemination and implementation of health interventions in various settings [34]. Building a more robust set of common measures for D&I research is also a priority [13]. Glasgow and colleagues suggest that alternative study designs beyond the traditional randomized trial that emphasize the importance of external validity and that take advantage of existing social, environmental, and community data should be utilized [19]. A focus on D&I approaches with high-risk populations, including low-income, minority, and low-health literacy groups, and in low-resourced settings is also an imperative [19, 34]. Finally, new interdisciplinary collaborations with diverse partners, including key stakeholders, consumers, and clinicians, will be important to grow the science [19].

4.1. Implications for Nursing Research.

D&I science moves beyond the individual as the unit of analysis to focus on groups, systems, the community, and beyond. Nursing research is conducted in all these areas, but D&I research is a way for nurses to influence health and health care on a larger scale. One example is the dissemination of evidence-based practice guidelines throughout a unit, hospital, and health care system. What are the best ways to have these guidelines widely used by nurses and other health care professionals? Which strategies are most cost-effective?

The D&I program announcements clearly present a potential funding opportunity for nurse scientists committed to translating evidence-based interventions to improve health (these program announcements were recently reissued on January 9, 2018, under PAR-13-055 (R01), PAR-13-054 (R21), and PAR-13-056 (R03)). Nursing has a rich history of work in research utilization to improve clinical care and promote practice-based inquiry. Nurse scientists are well prepared to lead and participate as members in interdisciplinary teams focused on disseminating and implementing evidence to practice. Symptom management and self-care in chronic disease and end-of-life care are just a few examples where nursing has made significant contributions to the science and should take a leadership role in translating this work to practice [35]. Many nurse researchers are skilled in both quantitative and qualitative designs often used in D&I research. A mixed-methods approach might be especially useful in testing different strategies for implementation across different populations.

There are opportunities to learn more about D&I science and receive assistance and feedback on a proposed grant application. The NIH hosts an annual conference on the science of dissemination and implementation in health, where attendees can hear state-of-the science presentations, learn about research findings in the poster session, network with D&I scientists, and attend a technical assistance workshop led by NIH Program Officers and funded by D&I researchers. Other research training opportunities, such as the annual NIH-sponsored Training Institute on Dissemination and Implementation Research in Health, are also offered periodically to the extramural community. The NIH Office of Behavioral and Social Sciences Research website includes information about these opportunities (obssr. od. nih. gov/scientific_areas/translation/dissemination_and_implementation/index. aspx).

Talking to the appropriate NIH Institute Program Officer identified on the PAR as the scientific contact person is also essential in planning an application submission. Considering the fit of an application with the mission of other institutes (e. g., NCI or NIMH), in addition to NINR, is also important. Grant applications for these PARs prior to 2018 were reviewed in Special Emphasis Panels, in which peer reviewers were appointed for each panel on a temporary basis. In 2018, the NIH Center for Scientific Review established a chartered study section to peer review these and other investigator-initiated applications in this science area, called the Dissemination and Implementation Research in Health Study Section (public. csr. nih. gov/StudySections/IntegratedReviewGroups/HDMIRG/DIRH/Pages/default. aspx). This website also provides a link to the study section’s membership roster. Whereas standing members of this study section are appointed for a specific term, other temporary reviewers are often appointed for a specific review cycle to augment the scientific expertise that may be needed, depending on the pool of applications. Another invaluable opportunity for nurse scientists who have expertise in a specific area of D&I science is to volunteer to serve as a peer reviewer for this study section by sending their curriculum vitae and letter of interest to the Scientific Review Officer assigned to this study section.

4.2. Limitações.

The description and analysis in this review were based solely on the funded project abstracts published in the NIH RePORTER under the previously identified program announcements. By their nature, proposal abstracts present a limited amount of information and might not accurately represent the project once completed. Outcomes cannot be identified through review of proposal abstracts; this would require subsequent review of publications based on the funded projects. The level of analysis was limited by having access only to those abstracts publicly available through funding. Consequently, no conclusions can be made based on funded projects compared with all proposals submitted in response to this PAR. No information is publically available regarding the total number of applications submitted. Furthermore, it is not known how representative the funded projects are for any of the descriptors provided in this paper compared with submitted proposals. It is also not known whether different types of applications or specific topics were more or less likely to be funded in relation to the entire pool of applications.

As reported by others [11, 12], this abstract review was hindered by inconsistent terminology for design and strategy and even for what was meant by dissemination or implementation. Although some abstracts provided details of the proposed projects, others omitted relevant content (e. g., model used). Equally evident from this review was the lack of common measures with established validity and reliability, particularly for measuring D&I processes and outcomes. The imperative to develop these common measures as key to the successful advancement of D&I science has been widely advocated [13, 34].

Finally, it should be noted that D&I science has undergone much development since the first general program announcement was released in 2005. It is not known what impact this may have had on the number and quality of proposals submitted, especially during the latter part of the time selected for this review.

5. Conclusão.

The overall goal of D&I science is to overcome the research-practice gap so that evidence-based health practices yield significant health benefits to all populations and across all health care settings [19]. The purpose of this paper was to enhance understanding of the body of work represented in the projects funded under the NIH dissemination and implementation program announcements over the past 8 years and suggest implications for nurse researchers. The projects in this portfolio demonstrated that D&I research is complex, often multiphase, and requires a collaborative, interdisciplinary approach. These projects make a highly significant contribution to the field, yet much work remains to be done, such as improving methods and measures, to move D&I science forward.

Although many nurse researchers and practitioners are engaged in D&I science, nurse scientists were underrepresented among the PIs for these projects. Nurse scientists are uniquely prepared to contribute to the advancement of D&I research in health. This NIH initiative represents an outstanding potential funding and leadership opportunity for nurse researchers committed to translational research and shortening the science-practice gap.

Communication and Dissemination Strategies To Facilitate the Use of Health-Related Evidence.

Background and Objectives for the Systematic Review.

The Agency for Healthcare Research and Quality (AHRQ) Effective Healthcare (EHC) Program funds individual researchers, research centers, and academic organizations to work with AHRQ to produce effectiveness and comparative effectiveness research for clinicians and consumers. 1 Comparative effectiveness research (CER) compares the benefits, harms, and effectiveness of health interventions for the prevention, diagnosis, treatment, and management of clinical conditions and the improvement of health care delivery. The purpose of CER is to assist patients and consumers, clinicians and other providers, and purchasers and payers to make informed decisions that will improve health care at both the individual and population levels. 1.

One EHC goal is to make CER accessible to these decisionmakers. The Institute of Medicine’s list of 100 priority topics for CER highlights the importance of translating and disseminating this research. 2 The specific topic (“compare the effectiveness of dissemination and translation techniques to facilitate the use of CER by patients, clinicians, payers, and others”) was listed among the first quartile of topics recommended for initial focus. Many hope that better communication and dissemination of CER will result in more widespread use of such information.

Coupled with these mandates is the fact that the ad hoc Uncertainty Committee of the EHC Stakeholder Group is interested in promoting effective ways to communicate uncertainty about health and health care evidence to end-users. The committee would like to know what approaches to conveying uncertainty increase the likelihood that audiences receiving such information will understand it and be able to factor it into their decisionmaking.

This systematic review has three related components; all focus on promoting informed health and health care decisions among patients and providers. First, it addresses the comparative effectiveness of communicating the evidence in various contents and formats that increases the likelihood that it will be understood and used by the target audience. Second, it examines the comparative effectiveness of a variety of approaches for disseminating the evidence from those who develop it to its potential users. Third, it examines the comparative effectiveness of various ways of communicating uncertainty associated with health and health care evidence to different target audiences.

Terminology and Definitions.

Transforming scientific evidence for its use in practice, commonly known as research translation , involves many processes and strategies. High-quality studies must be conducted and the body of evidence must then be synthesized and summarized, often in the form of systematic reviews. Research evidence presented in complex and technical jargon must be altered to simpler language that potential end-users will find easier to understand; it must then be disseminated to those audiences; and, finally, providers and others must incorporate it into existing health care processes and systems to improve health.

The terminology for each of these steps overlaps considerably. We list three key definitions to help readers understand the scope of our review, which focuses on the communication and dissemination of health and health care evidence and effective ways to present associated uncertainty (see Table 1). We deliberately avoid the term “translation” in our review because it is broadly and diversely defined. Implementation processes to improve health outcomes are beyond the scope of this review.

In the sections below, we present background information for the three areas of the review—communication techniques, dissemination strategies, and communicating uncertainty.

Communication Techniques.

Government agencies and institutions, advocacy groups, media organizations, researchers, and other interested stakeholders can all carry out communication activities. They use various techniques to communicate evidence so that target audiences can understand it better. For purposes of our review, communication techniques fall into the broad area of “health communication” and focus on making evidence interpretable, persuasive, and actionable. The John M. Eisenberg Center for Clinical Decisions and Communications Science translates AHRQ’s comparative effectiveness review information to create a variety of materials ranging from evidence summaries to decision aids and other products.

To our knowledge, there is no overarching framework of communication strategies to guide our review. Multiple systematic reviews, however, have explicated key communication techniques that are of interest to the field such as:

Tailoring the message — Communication designed for an individual based on information from the individual. Targeting the message to audience segments — Communication designed for subgroups based on group membership or characteristics such as age, gender or sex, race, cultural background, language, and other “psychographic” characteristics such as a person’s attitudes about particular subject matter. Using narratives — Communication delivered in the form of a story, testimonial, or entertainment education. Framing the message — Communication that conveys the same messages in alternate ways (e. g., what is gained or lost by taking an action or making a choice).

Several other communication techniques exist such as applying plain language principles, varying the source of the evidence, and using theoretically driven messages. These communication strategies are widely used and can be considered best practices; however, they are not included in this review given our focus on comparative effectiveness of different techniques.

Table 2 summarizes the evidence for the effectiveness of the four communication techniques examined in this review: tailoring the message, targeting the message to audience segments, using narratives, and framing the message. These systematic reviews focus on the effectiveness of the communication techniques relative to not using any technique , that is, relative to “usual care.” Thus, these reviews establish the contribution of each technique when compared with not using any communication technique.

Lustria et al., in press 8.

Noar et al., 2009 10.

Winterbottom et al., 2008 12.

Latimer et al., 2018 14.

Dissemination Strategies.

Dissemination is the targeted distribution of information and intervention materials to a specific public health or clinical practice audience. The intent is to spread knowledge and the associated evidence-based interventions. 4,5 Dissemination occurs through a variety of channels, social contexts, and settings. Evidence dissemination has several very broad goals: (1) to increase the reach of evidence; (2) to increase people’s motivation to use and apply evidence; and (3) to increase people’s ability to use and apply evidence.

Dissemination strategies aim to spread knowledge and the associated evidence-based interventions on a wide scale within or across geographic locations, practice settings, or social or other networks of end-users such as patients and health care providers. In examining influences that help spread innovations along the continuum between passive diffusion of information and active dissemination, Greenhalgh et al. 15 created an inventory of strategies aimed at influencing individual, social, and other networks of adopters.

Existing systematic reviews and dissemination research show that passive dissemination strategies are not as effective as active strategies. For example, in a synthesis of 41 systematic reviews, Grimshaw and colleagues16 reported that active, multifaceted approaches were most effective. 16 Additional research also supports this conclusion. Interventions that rely solely on passive information transfer are relatively ineffective, but active knowledge-translation strategies are usually effective (although the effects are modest). Educational outreach and academic detailing are the most consistently effective interventions reported. Interventions that incorporate two or more distinct strategies (i. e., that are multifaceted) are consistently more likely to work than single interventions. 17.

We distinguish dissemination strategies from implementation strategies, with the latter focusing on actually undertaking the process to institutionalize the new evidence in clinical practice.

Communicating Uncertainty.

Uncertainty is inherent in health and health care evidence and can limit its use. Uncertainty creates multiple challenges, including difficulties: (1) determining whether preventive services and treatments should be implemented in clinical practice, (2) determining for whom and in what settings preventive services and treatments should be implemented, and (3) communicating evidence so that consumers can make informed decisions. By optimizing the presentation of uncertainty, evidence creators, synthesizers, and disseminators can enable people to make the best possible decisions.

To date, most work on presenting uncertainty has focused on stochastic uncertainty: the chance or probability of an event occurring. This work has generally focused on alternate presentations of disease risk, side effects, treatment benefits, and treatment harms. Multiple systematic evidence reviews and randomized trials 18-22 have demonstrated that:

Qualitative or non-numeric presentations of probability (e. g., “likely,” “certain,” “rare”) are open to individual interpretation. 19,22 Percentage and “x/1,000” presentations are more understandable than “1 in x” presentations of probability; 22-24 and “x/1,000” presentations are better than percentage presentations for representing conditional probabilities. Using the same denominator in “x/1,000” presentations 22,24,25 facilitates understanding. Absolute relative risk and relative risk reduction are more understandable than number needed to treat presentations. 18-22 Absolute relative risk tends to be less persuasive than relative risk reduction. 18-22.

Little work has focused on other types of uncertainty, although some conceptual pieces have offered a framework for study. For instance, Han et al. 26 identified several relevant domains of uncertainty that influence health care. These include uncertainty about the strength of evidence (also called ambiguity), uncertainty about the significance of particular risks (including their timing or severity), uncertainty about the complexity of information (e. g., the multiplicity or stability of risks), and uncertainty resulting from ignorance about risks.

For our review, we define the concept of uncertainty relative to the schemes for grading the strength of evidence for AHRQ’s Evidence-based Practice Center (EPC) Program. The overall strength of evidence grade is made up of judgments about four required domains. As taken from Owens et al., 27 these domains are as follows:

Risk of bias—“the degree to which the included studies have a likelihood of adequate protection against bias (i. e., good internal validity).” Consistency—“the degree to which reported effect sizes from the included studies appear to have the same direction or magnitude of effect.” Directness—“whether the evidence links the interventions directly to the health outcomes.” Precision—“the degree of certainty surrounding an effect estimate with respect to a given outcome.”

Each domain may individually contribute to the uncertainty about the evidence. When the overall strength of evidence is high, the uncertainty is low. Conversely, when the overall strength of evidence is insufficient or low, uncertainty is high. 28.

End-users need to understand the overall balance of benefits and harms (i. e., the “net benefit”) of preventive services and treatments. Determining net benefit requires synthesizing the evidence across multiple studies and judging the magnitude of the overall benefit relative to harm (e. g., net benefit, marginal or uncertain benefit, and net harm). What constitutes a “sufficient” margin of benefit for evidence to provide “net benefit” is open to interpretation and constitutes another important source of uncertainty.

End-users also need to grasp whether the evidence is applicable for their own unique populations and settings. Assessing applicability requires considering whether the preventive service or treatment tested would be expected to have the same biologic effect in the population and setting in which it might be applied. In contrast to AHRQ’s EPCs, the U. S. Preventive Services Task Force (USPSTF) makes specific determinations of net benefit and also includes applicability in their judgments about evidence grade.

Once those who are synthesizing evidence determine strength of evidence, net benefit, and applicability, various groups must communicate the information to consumers. Explaining such findings and their implications can be challenging. Politi et al. 29 suggest using subjective descriptions, various depictions of numbers, or visual aids to represent uncertainty and its degree.

Rationale and Relevance for Conducting the Review.

AHRQ sponsors research to improve the quality, effectiveness, and safety of health care in the United States. Evidence reports and technology assessments generated through AHRQ’s EHC Program provide science-based information about common, relevant health conditions and technologies to serve the needs of patients, clinicians, insurance payers, and other end-users. Findings from clinical, health services, and comparative effectiveness studies—especially as assembled for systematic reviews and similar documents—need to be communicated and disseminated effectively to influence optimal and timely practice and health policies.30.

Because systematic reviews evaluate multiple studies, they are inherently complex. Nuanced descriptions of benefits, harms, strengths of evidence, and uncertainties make evidence reports difficult to understand for many people. Evidence reports are typically targeted at scientific researchers in related fields, rather than the patients or clinicians who ultimately make health care decisions. Ensuring that research evidence is delivered to these audiences in easy-to-understand formats is critical to the success of evidence-based research. Common communication and dissemination barriers, including not seeing or being exposed to the information, can impede its use in decisionmaking. 31-33.

Given AHRQ’s mission, a critical goal is to evaluate the effectiveness of strategies to make evidence report findings widely available and techniques to ensure that such findings are correctly understood. By evaluating the comparative effectiveness of communication techniques and dissemination strategies, this review will inform efforts to make research easily accessible for patients and clinicians.

The Key Questions.

To recap, our review has three Key Questions (KQs), listed below.

What is the comparative effectiveness of communication techniques to promote the use of health and health care evidence by patients and clinicians? How does the comparative effectiveness of communication techniques vary by patients and clinicians?

What is the comparative effectiveness of dissemination strategies to promote the use of health and health care evidence for patients and clinicians? How does the comparative effectiveness of dissemination strategies vary by patients and clinicians?

What is the comparative effectiveness of different ways of explaining uncertain health and health care evidence to patients and clinicians?

Below we describe the population, intervention, comparators, outcomes, and settings (PICOTS) for our review (see Table 3).

Techniques to communicate evidence: Tailoring the message Targeting the message to audience segments Using narratives Framing the message Using a multipronged approach with any of the communication techniques described above (e. g., tailoring and targeting)

Strategies to disseminate evidence that will:

Increase reach of the evidence (e. g., telephone; postal mail/e-mail; electronic/digital media, social media, mass media; interpersonal outreach) Increase people’s motivation to use and apply the evidence (e. g., opinion leaders, champions, social networks) Increase people’s ability to use and apply the evidence (e. g., additional resources, skills building) Use a multipronged approach with any of the dissemination strategies described above (e. g., social marketing, academic detailing)

Techniques to explain uncertain evidence using:

Different presentation formats (e. g., graphical, numeric, non-numeric) Any communication technique, including the ones above and hypothetical situations.

Intermediate outcomes for all target audiences Awareness of the evidence Knowledge about the evidence Discussions about the evidence Self-efficacy to use the evidence Behavioral intentions to use or apply the evidence.

Ultimate outcomes for patients:

Health-related decisions or behaviors Clinical outcomes.

Ultimate outcomes for clinicians:

Analytic Framework.

We present our analytic framework in Figure 1. As noted in the box to the far left, we plan to examine studies that use research-based evidence as the source of information for their communication techniques (KQ 1) and dissemination strategies (KQ 2). We will define research-based evidence as evidence that has been assembled, reviewed, and presented by evidence developers and has been used to make recommendations. Examples of the sources of evidence that we will consider acceptable are:

National Guidelines Clearinghouse U. S. Preventive Services Task Force Community Guide to Preventive Services The Cochrane Collaboration National Institute for Health and Clinical Excellence Specific Institutes of the National Institutes of Health (e. g., National Heart, Lung and Blood Institute; National Institute of Diabetes and Digestive and Kidney Diseases; National Cancer Institute); Scottish Intercollegiate Guidelines Network AHRQ-funded Evidence-based Practice Centers The 6th Joint National Committee.

We will only include research-based evidence that is health related. For communication and dissemination (KQs 1 and 2), we will only include health-related evidence that seeks to promote informed decisions about individual-level human health, reflecting our general interest in prevention, diagnosis, and treatment.

Strategies and techniques discussed in this review could be beneficial for several audiences. These include (1) patients and the general public and (2) clinical service providers, including physicians, nurses, mid-level providers, and/or pharmacists who deliver health care. For KQs 1 and 2, we plan to examine how the effectiveness of communication techniques and dissemination strategies varies for different target audiences, including patients and clinicians. Techniques and strategies that work well for one audience may not work as well for another audience. For KQ 3, we will focus on studies that explore communication techniques to explain uncertain evidence.

We will include studies that examine intermediate outcomes. These can be awareness of the evidence; knowledge of the evidence; discussions about the evidence; self-efficacy about the evidence; and behavioral intentions to use or apply the evidence. We will also include studies that measure ultimate outcomes. These can be the following: for patients—health-related decisions or behavior and clinical outcomes; and for clinicians—behavior. We expect that most studies will focus on intermediate outcomes because they occur sooner and, thus, are more practical to study.

Figure 1. Analytic framework.

A. Criteria for Inclusion/Exclusion of Studies in the Review.

Criteria for inclusion and exclusion of studies address both the PICOTS model outlined in Section II (see Table 3) and other important study design and publication issues. The criteria also address intervention content that is specific to each KQ. In Table 4, we present the inclusion/exclusion criteria common to all three KQs. We then present the inclusion/exclusion criteria that are specific to each KQ (Tables 5, 6, and 7 respectively).

01/01/2000 to present for communication and dissemination 01/01/1966 to present for uncertainty.

Individual randomized controlled trials Clustered randomized controlled trials Quasi-experimental trials (KQ 3 only) Nonrandomized trials (KQ 3 only)

All nonexperimental studies Qualitative research.

Systematic reviews Meta-analyses Protocols Studies published only as abstracts Studies with no original data (i. e., no experimental data) Narrative reviews Editorials, letters to editors, and similar publications.

Children (<19 years) Incarcerated populations Federal and State policymakers.

Alternate presentations of specified interventions.

Comparisons with usual practice (except for KQ 3 when the evidence is sparse)

Inpatient and outpatient settings and clinics of all types Academic health care institutions Community-based settings such as churches, fraternal organizations, professional or social clubs, pharmacies, and homes.

Primary and secondary schools Prisons and jails.

France, Germany, Italy, The Netherlands, the United Kingdom, the United States, Austria, Belgium-Luxembourg, Brazil, Denmark, Finland, Greece, Ireland, Israel, Norway, Poland, Portugal, Spain, Sweden, Switzerland, Turkey, Australia, Canada, Japan, and South Africa.

N ≥ 100 total individuals in the study No limits on size of clusters.

N < 100 total individuals in the study.

We will focus the content on original research articles that are available in full-text form, are published in English, and involve randomized trials with at least 100 total individuals in the study (e. g., 50 individuals per arm in a study with two arms). Existing systematic reviews suggest that a sufficient amount of high-quality evidence is available in the form of randomized controlled trials with sample sizes greater than 100.

For communication and dissemination, we will include studies from January 2000 to the present. Multiple systematic reviews on communication and dissemination have been published since 2000. These reviews highlight evidence for their support, although none of these reviews examine the comparative effectiveness of different techniques and strategies (see background section). For uncertainty, we will include studies from January 1966 to present because no previous reviews have addressed uncertainty.

We will focus on studies examining the adult population 19 years of age and older, including the general public or patients and clinicians of all races and ethnicities and all levels of income, insurance coverage, and literacy. We will define clinicians to include physicians, nurses, midlevel providers, and/or pharmacists. We will exclude Federal and State policymakers because they have less direct impact on clinical decisionmaking when compared with patients and providers.

Admissible settings include inpatient and outpatient settings and clinics of all types; academic health care institutions; and community-based settings such as churches, fraternal organizations, professional or social clubs, pharmacies, and homes. The settings must be countries located in Blocks 1 or 2 based on a recent world-system analysis by Kick et al. (2018). 34 Blocks 1 and 2 contain countries in the core of the world system. Block 1 countries include: France, Germany, Italy, The Netherlands, the United Kingdom, and the United States. Block 2 countries include: Austria, Belgium-Luxembourg, Brazil, Denmark, Finland, Greece, Ireland, Israel, Norway, Poland, Portugal, Spain, Sweden, Switzerland, and Turkey. If the settings are not located in Blocks 1 or 2, they must be located in the following “core” countries in Block 3 that have conducted considerable comparative effectiveness research: Australia, Canada, Japan, or South Africa.

We plan to include studies that have at least one outcome of interest. Intermediate outcomes are applicable to all target audiences. They may include awareness about the evidence; knowledge about the evidence; discussions about the evidence; behavioral intentions to use or apply the evidence; and self-efficacy. For the general public or patients, ultimate outcomes may include health-related decisions or behaviors and clinical outcomes. For clinicians, ultimate outcomes may include behavior.

Initially, the health and health care evidence may relate to prevention or diagnosis/treatment of any health condition. We will sort the studies into prevention and diagnosis/treatment categories after the abstract and/or full-text review process and confer with AHRQ about the possibility of including both the prevention and diagnosis/treatment categories based on the number of studies in each category and available resources.

Communication (KQ 1): For KQ 1, we will include studies that compare two or more of the included communication techniques head to head. Techniques of interest include tailored communication, communication targeted at audience segments; use of narratives; and message framing (see Table 5). These strategies are designed to make information clearer, easier to understand, and more relevant to end-users.

Multicomponent techniques seek to increase the overall impact of evidence across geographic and practice settings and across target audiences. Initially, we will include all studies that use a multicomponent approach with a combination of two or more communication techniques (e. g., tailoring and targeting) compared to single techniques. After the abstract and/or full-text review process, we will review the combinations of communication techniques, identify the most frequent combinations, and likely focus our efforts on synthesizing and analyzing the most frequent combinations. We will confer with AHRQ about limiting the combinations of communication techniques included in this systematic review based on the number of studies addressing each combination and available resources.

Computerized database of messages that can be combined in response to answers to preprogrammed questions asked of an individual Electronic algorithm to design messages based on individual input regarding a limited number of questions Attempts to direct messages to individuals’ status on key theoretical determinants (knowledge, outcome expectations, normative beliefs, efficacy, and/or skills) of the behavior of interest Incorporating recognizable aspects of participants to convey (implicitly or explicitly) that the messages are specifically designed for them. This is more than a personalized letter (e. g., “Dear Jane”) Providing messages to participants about their psychological or behavioral states. Individualized feedback may have then been provided synchronously (e. g., via chat, telephone, or face to face) or asynchronously (e. g., via e-mail or a discussion board or by postal mail)

Targeting can be accomplished by manipulating language, visuals, music, or choice of behavior topic that make the message more interesting, relevant, or appealing to specific subgroups.

Personal stories, case studies, anecdotes, testimonials, and experiential sharing (e. g., a personal account of an individual’s experience in donating an organ to a sibling) Entertainment education (e. g., talking about an issue in a soap opera storyline) and photo novellas.

Messages that emphasize the positive consequences of compliance are referred to as a positive (gain) frame , whereas a version that stresses the negative consequence of noncompliance is called a negative (loss) frame . Studies should explicitly state that the stimuli differed in terms of a gain or loss frame. For example: Positive (gain) frame: “Get active! Enhance your health!” vs. “A lack of activity increases risk for diabetes.” Negative (loss) frame: “With drug X, you have a 5% chance of dying” vs. “With drug X, you have a 95% chance of surviving.”

A multicomponent approach uses several communication techniques in concurrent combination or in sequence to increase the comprehension and understanding of evidence.

We plan to exclude studies that compare one of these communication techniques to “usual care” (i. e., meaning paralleling standard practice and not representing any of the included techniques or strategies that serve as interventions of interest), because several prior reviews have previously examined this. We will also exclude studies that compare permutations of the included communication techniques, which is comparison within the rows above as opposed to across the rows above, for the same reason. For example, a study that compares targeting information to different types of audience segments (e. g., by race or ethnicity, sex or gender, and/or age groups) will be excluded. We will exclude studies that examine interpersonal communication techniques given that these are more costly to implement and less practical when reaching large-scale audiences. We will also exclude decision aids given the volume of other research (e. g., Cochrane collaboration) focusing on them.

Active dissemination strategies involve active efforts to spread evidence-based information via specific strategies and channels.

Usual care/practice for dissemination is passive dissemination — passive, uncontrolled spread of information of evidence or no spread of information. Examples include posting information to an evidence developer’s Web site and posting scientific publications in a searchable database.

As described above, evidence dissemination has several broad goals. We plan to include active dissemination strategies that are designed to do one or more of the following (see Table 6): (1) increase the reach of information (e. g., postal and electronic mail; electronic/digital, social, and mass media); (2) increase people’s motivation to use and apply evidence (e. g., using champions, opinion/thought leaders, peer and social networks); and (3) increase people’s ability to use and apply evidence (e. g., by also providing additional resources or information; skills-building efforts). We will include comparisons of two or more of the included dissemination strategies head to head or, in other words, comparisons between rows. We also will include comparisons within the rows below given the current state of the literature and the lack of comparative information within these groupings.

Multicomponent strategies seek to increase the overall impact of evidence across geographic and practice settings and across target audiences. Initially, we will include all studies that use a multicomponent approach with a combination of two or more dissemination strategies (e. g., social marketing, academic detailing) compared to single strategies. After the abstract and/or full-text review process, we will review the combinations of dissemination strategies, identify the most frequent combinations, and likely focus our efforts on synthesizing and analyzing the most frequent combinations. We will confer with AHRQ about limiting the combinations of dissemination strategies included in this systematic review based on the number of studies addressing each combination and available resources.

We plan to exclude studies that compare the above strategies to “usual care” (i. e., meaning passive, uncontrolled spread of information of evidence or no spread of information such as posting information to an evidence developer’s Web site and posting scientific publications in a searchable database), because passive dissemination strategies are generally not effective.16 We plan to exclude studies in which the primary purpose of the intervention is implementation (see the definition in section I), even when the intervention has an effect of raising awareness and educating patients or clinicians (such as reminders and audit-and-feedback). An example of implementation is when a clinical practice adopts or tries out a new treatment approach that is based on newly available health or health care evidence.

Any information delivered via a human carrier employed by a government-run postal service to a new destination or a for-profit mail delivery service like Fed Ex or United Parcel Service. Any information delivered via phone and/or Web-based e-mail, text messages, or electronic programs such as PDA (personal digital assistant) resources or phone apps Any information delivered via Internet-based social networking sites such as Facebook, Twitter, YouTube, My Space, Foursquare™, LinkedIn, et cetera. Sometimes there are problem or group-specific social networks for professional organizations and patient subgroups; these would also fall into social media as long as they have a “social” network component as described above. Any information delivered via TV, radio, print newspapers, print magazines, or billboards. Information delivery via phone, Webinar, or in-person visits, including purposeful delivery of brochures/pamphlets; can include pharmacists, nurses, doctors, counselors, but does not include a motivational component.

Champions (aka a cheerleader), such as someone who takes ownership of the evidence and visibly promotes it within his or her own organization or across other settings. Champions help overcome social and political pressures imposed by an organization, role model personal commitment to the program, and involve others in its use. For example, an evidence developer might train/enlist the help of a local champion to promote evidence within his or her organization Opinion/thought leaders (frequently has an endorsing or persuasive element), such as a recognized expert in his or her field who lends his or her name to dissemination efforts to establish credibility. They may or may not actually participate in the work and do not necessarily have any relationship with the organization to which evidence is to be disseminated. They could endorse the intervention, have a role in its development, or advise on strategies. The idea here is that an opinion leader is endorsing the idea being disseminated. For example, an opinion leader might be the chief executive officer of a company or the head of a department, or an external expert in a particular field applicable to the evidence, or a well-recognized figure like the Surgeon General of the United States Social networks, such as a network of individuals who are friends, colleagues, or know each other. The relationships can be informal (friends, peers, or family) or formal (patient/provider/nurses) that have defined role obligations.

Provision of supporting “how-to” materials, including physical materials that might be used by a practice to put evidence into use. This might include tracking sheets to be given to patients and risk calculators to be used by clinicians. It might also include tailored toolkits that explain implementation of evidence in specific settings. Supporting materials do not include brochures, counseling resources, or resources that originate from the practice. They must originate from the evidence developer and be given to the end-user. Skill training, capacity building, and problem solving including training in any skill that would allow appropriate use of evidence (to overcome barriers); might include training in recognizing the quality of evidence or the circumstances under which it can be reasonably used; and also includes training in various counseling techniques that would facilitate evidence implementation and interactive seminars.

A multicomponent approach uses several dissemination strategies in concurrent combination or in sequence to increase the reach of evidence, enhance the end-user(s)’ motivation to use and apply evidence or to adopt it.

Uncertainty (KQ 3): Health and health care evidence inherently involves some degree of uncertainty. We focus this review on uncertainty in a body of evidence and how to effectively communicate this uncertainty to target audiences in ways that allow informed decisions. We will specifically examine studies that compare ways to explain the following components of uncertainty: overall grade for strength of evidence, risk of bias, consistency, precision, and directness (see Table 7). We will also consider studies that compare ways to explain net benefit (of prevention or therapeutic services). Finally, we will look at the issue of applicability (i. e., generalizability or what is sometimes termed external validity). In this context, we will look at studies that attempted to explain that although research evidence may exist on a particular topic, it may not be generalizable for one or more reasons. Strategies to explain the different types of uncertainty in evidence may use numeric, non-numeric, or visual presentation formats. We will also examine relevant communication techniques described, including the ones for KQ 1 and hypothetical situations, if the technique is used to communicate uncertainty.

Other forms of uncertainty also affect decisionmaking but are beyond the scope of this review. We will not examine interventions designed to help individuals cope with uncertainty. We will also exclude studies that compare alternate presentations of point estimates, as these studies have been well summarized in previous reviews on risk communication. 26,35-37.

In addition, we will exclude studies that address uncertainty arising from any of the following circumstances: multiple causes of illness, changes in risks over time, lack of knowledge about evidence that is available, unclear patient values, trade-offs between benefits and harms in limited-resource settings, concerns about clinicians’ competence, concerns about how a medical illness will affect family and friends, imperfect diagnostic testing, or uncertain prognosis. We will not include cost-effectiveness studies.

B. Searching for the Evidence: Literature Search Strategies for Identifying Relevant Studies To Answer the KQs.

We will systematically search, review, and synthesize the scientific evidence for each KQ. The steps that we will take to accomplish the literature review are described below. To identify articles relevant to each KQ, the EPC librarian will begin with three focused PubMed-MEDLINE searches on the comparative effectiveness of: (1) communication techniques to promote the use of health and health care evidence, (2) dissemination strategies to promote the use of health and health care evidence, and (3) different methods used to explain uncertain evidence. We will search using a variety of medical subject headings (MeSH terms) and major headings, as well as free-text and title and abstract text-word searches. Relevant terms are listed in Table 8. Search results will be limited to studies on humans published from 01/01/2000 onward for communication and dissemination given the previous systematic reviews and from 01/01/1966 onward for uncertainty given the lack of previous reviews on the latter. We will include only randomized controlled trials for KQs 1 and 2 given the amount of available literature. For KQ 3, we will also include the following experimental study types in MEDLINE: comparative studies, controlled clinical trials, or cross-over studies. We will limit the searches to studies published in English given the scope of this review.

Using analogous search terms, the librarian will also search the Cochrane Library and Cochrane Central Trials Registry for trials on these topics. Further, she will search Web-of-Science to trace citations of known uncertainty frameworks and capture articles on uncertainty, and search PsychINFO for communication and uncertainty articles given the high likelihood of relevant publications in the psychological literature. We will conduct quality checks to ensure that our main searches identify “known studies.” To limit KQ 1 and KQ 2 searches to relevant comparative effectiveness literature, we will further limit searches to comparative effectiveness studies by including only studies that have any of the following keywords throughout their citation in EndNote (Thomson Reuters, Philadelphia, PA): comparative effectiveness, evidence based, evidence-based, and recommendation or recommendations. This is analogous to a text-word search in MEDLINE. We will not further refine KQ 3 results given our broader approach to this literature.

We expect some overlap in results among the three searches (for the three KQs). We will remove duplications in our EndNote database and track the yield from each search.

We will hand search bibliographies of included articles. In addition, in an effort to avoid retrieval bias, we will manually search the reference lists of landmark studies and background articles on this topic to look for any relevant citations that electronic searches might have missed.

We will conduct an updated literature search (of the same databases searched initially) concurrent with the peer review process. Any literature suggested by Peer Reviewers or public comment respondents will be investigated and, if appropriate, incorporated into the final review. Appropriateness will be determined by the same methods listed above.

Determining Article Inclusion.

Two trained members of the research team will independently review all titles and abstracts identified through searches for eligibility against our inclusion/exclusion criteria. Studies marked for possible inclusion by either reviewer will undergo a full-text review. For studies without adequate information to determine inclusion or exclusion, we will retrieve the full text and then make the determination. All results will be tracked in an EndNote database.

We will retrieve and review the full text of all articles included during the title/abstract review phase. Two trained members of the research team will independently review each full-text article for inclusion or exclusion on the basis of the eligibility criteria described earlier. If both reviewers agree that a study does not meet the eligibility criteria, the study will be excluded. If the reviewers disagree, conflicts will be resolved by discussion and consensus or by consulting a third, senior member of the review team. Reasons for exclusion will be tracked and reported along with the main reason(s) for exclusion in a report appendix. The disposition of all items, (starting with the initial yields of the searches) through to articles finally retained for synthesis, will be reported in a flow diagram conforming to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. We will account for studies reported in multiple articles.

C. Data Abstraction and Data Management.

For studies that meet inclusion criteria, we will abstract relevant information into evidence tables. We will design data abstraction forms to gather pertinent information from each article, including characteristics of study populations, settings, interventions, comparators, study designs, methods, and results. Table 9 displays data items that will be extracted. Trained reviewers will extract the relevant data from each included article into the evidence tables. All data abstractions will be reviewed for completeness and accuracy by a second member of the team.

Study design Study objectives Intervention and comparators Setting(s) Duration Outcomes measured Sample size Eligibility criteria Sampling strategy Units and methods of randomization Sample retention Statistical analysis, including adjustment for multiple comparisons, clustering, and use of intention-to-treat analysis Covariates used in the analysis.

Age group Gender (or sex) Education Race and/or ethnicity Income Health literacy/numeracy.

Definition of outcomes Measures used Source of outcome data Results in intervention and control groups.

D. Assessment of Methodological Quality of Individual Studies.

To assess the risk of bias of studies, we will use criteria described in the AHRQ Methods Guide for Effectiveness and Comparative Effectiveness Reviews . 38 We will use questions adapted from the RTI Item Bank, 39 the Cochrane Risk of Bias tool, and previous work by the USPSTF. 40 We will assess the potential for selection bias (including attrition bias), measurement bias (such as performance bias, detection bias), confounding, and power. We will also assess potential biases in reporting. We will qualitatively synthesize the results and determine a rating of low, medium, or high risk of bias. In general, a study with a low risk of bias has a strong design, measures outcomes appropriately, uses appropriate statistical and analytical methods, reports low attrition and little or no differential attrition, and reports methods and outcomes completely. Studies with a medium risk of bias are those with some bias but not enough to invalidate results that do not meet all criteria required for low risk of bias. These studies may have some flaws in design or execution (e. g., imbalanced recruitment, high attrition) but they provide information (say, through sensitivity analysis) to enable the reader the ability to evaluate to determine that those flaws are not likely to cause major bias. Missing information often leads to ratings of medium as opposed to low risk of bias. Studies with a high risk of bias are those with at least one major flaw that is likely to cause significant bias and thus might invalidate the results. Major flaws preclude the ability to draw causal inferences between the intervention and the outcome.

Two independent reviewers will assess the risk of bias for each study. Disagreements between the two reviewers will be resolved by discussion and consensus or by consulting a third, senior member of the team.

E. Data Synthesis.

Data synthesis and analysis is a core step in developing a systematic review. Given the diversity of our three KQs, wide range of interventions, and plethora of outcomes under consideration, we anticipate that we will synthesize most of our data qualitatively. In addition, we expect a fair amount of heterogeneity across studies. Therefore, we will integrate the information qualitatively into understandable text and summary tables.

We will determine whether quantitative synthesis using meta-analysis is appropriate. The decision will be based on the total number of studies and, assuming a sufficient number of studies are potential candidates for such analyses, on an assessment of both the clinical and the statistical heterogeneity of the data. We will assess clinical heterogeneity by comparing studies on their PICOTS characteristics. If studies are similar and we proceed with quantitative analyses, we will assess statistical heterogeneity by calculating the chi-squared statistic and the I2 statistic (the proportion of variation in study estimates due to heterogeneity). We will conduct any meta-analyses we perform using random effects models, given that this is the most conservative approach.

We expect to organize our report into three separate results chapters—one for each KQ (communication, dissemination, uncertainty). Within each chapter, we will organize our results first by outcome and subsequently by the types of interventions compared. For each outcome and, within each outcome, each comparison type, we will examine the consistency and precision of effect.

We will pay particular attention to moderators of study effects as a way to explain seemingly disparate effects. Possible moderators of interest for all key questions include: risk of bias, study size, and target audience. Other moderators will vary by KQ (communication, dissemination, uncertainty) and may include the following:

For our review of communication techniques:

Literacy/numeracy level of audience intervention intensity and/or complexity Message delivery setting Message source.

For our review of dissemination techniques:

Care delivery setting Organizational readiness and supports Type of media, mode, or channel.

For our review of techniques for communicating uncertainty:

Literacy/numeracy of audience Format of presentation (graphical, numeric, non-numeric, combination) Participant optimism/anxiety Amount/degree of uncertainty.

F. Grading the Strength of Evidence for Individual Outcomes.

We will grade the strength of evidence on the basis of guidance established for the EPC Program. 38,41 Developed to grade the overall strength of a body of evidence, this approach incorporates four key domains: risk of bias (including study design and aggregate quality), consistency, directness, and precision of the evidence. The grades of evidence that can be assigned are defined in Table 10. Grades reflect the strength of the body of evidence to answer the KQs on the comparative effectiveness of the interventions in this review. Two reviewers will independently assess each domain for each key outcome listed in the analytic framework, and conflicts will be resolved by consensus or, if necessary, by adjudication by a third, senior investigator.

G. Assessing Applicability.

We will assess the applicability both of individual studies and of the body of evidence for specific KQs. 38 For individual studies, we will examine characteristics that may limit applicability based on the PICOTS structure. Such conditions may be associated with heterogeneity of treatment effect and the ability to generalize the effectiveness of an intervention to use in everyday practice. Examples include the following:

Population: narrow eligibility criteria, Outcomes: use of composite outcomes that mix outcomes of different significance to patients, Settings: restrictions to certain types of health care institutions when services might be rendered in many different locales or venues, and Timing: studies of different duration that may have various implications for applicability.

We will abstract and report key characteristics that may affect applicability into evidence tables. To assess the applicability of a body of evidence, we will consider the consistency of results across studies that represent an array of different populations.

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Definition of Terms.

Summary of Protocol Amendments.

Review of KQs.

For all EPC reviews, the EPC reviewed KQs and refined them as needed with input from Key Informants and the Technical Expert Panel (TEP) to ensure that the questions are specific and explicit about what information is being reviewed. In addition, for comparative effectiveness reviews, the KQs were posted for public comment and finalized by the EPC after review of the comments.

Key Informants.

Key Informants are the end-users of research, including patients and caregivers, practicing clinicians, relevant professional and consumer organizations, purchasers of health care, and others with experience in making health care decisions. Within the EPC program, the Key Informant role is to provide input into identifying the KQs for research that will inform health care decisions. The EPC solicits input from Key Informants when developing questions for systematic review or when identifying high-priority research gaps and needed new research. Key Informants are not involved in analyzing the evidence or writing the report and have not reviewed the report, except as given the opportunity to do so through the peer or public review mechanism.

Key Informants must disclose any financial conflicts of interest greater than $10,000 and any other relevant business or professional conflicts of interest. Because of their role as end-users, individuals are invited to serve as Key Informants and those who present with potential conflicts may be retained. The Task Order Officer (TOO) and the EPC work to balance, manage, or mitigate any potential conflicts of interest identified.

Technical Experts.

Technical experts constitute a multidisciplinary group of clinical, content, and methodological experts who provide input regarding methodological issues and scoping the reviews. They are selected to provide broad expertise and perspectives specific to the topic under development. Divergent and conflicted opinions are common and perceived as healthy scientific discourse that results in a thoughtful, relevant systematic review. Therefore, study questions, design, and/or methodological approaches do not necessarily represent the views of individual technical and content experts. Technical experts provide information to the EPC to identify literature search strategies and recommend approaches to specific issues as requested by the EPC. Technical experts do not do analysis of any kind nor contribute to the writing of the report.

Technical experts must disclose any financial conflicts of interest greater than $10,000 and any other relevant business or professional conflicts of interest. Because of their unique clinical or content expertise, individuals are invited to serve as technical experts and those who present with potential conflicts may be retained. The TOO and the EPC work to balance, manage, or mitigate any potential conflicts of interest identified.

Peer Reviewers.

Peer Reviewers are invited to provide written comments on the draft report based on their clinical, content, or methodological expertise. Peer review comments on the preliminary draft of the report are considered by the EPC in preparation of preparing the final draft of the report. Peer Reviewers do not participate in writing or editing of the final report or other products. The synthesis of the scientific literature presented in the final report does not necessarily represent the views of individual reviewers. The dispositions of the peer review comments are documented and will, for comparative effectiveness reviews and technical briefs, be published 3 months after the publication of the evidence report.

Potential reviewers must disclose any financial conflicts of interest greater than $10,000 and any other relevant business or professional conflicts of interest. Invited Peer Reviewers may not have any financial conflict of interest greater than $10,000. Peer Reviewers who disclose potential business or professional conflicts of interest may submit comments on draft reports through the public comment mechanism.