Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned

Forsythe, Laura P.; Ellis, Lauren E.; Edmundson, Lauren; Sabharwal, Raj; Rein, Alison; Konopka, Kristen; Frank, Lori

doi:10.1007/s11606-015-3450-z

Cited by 245 publications

(296 citation statements)

References 38 publications

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“…These findings are comparable to those of studies examining stakeholder engagement in other fields of health research 133, 134. Both of these studies emphasize the importance of engaging stakeholders throughout all stages of the research, a recommendation also posed by the GPP guidelines for HIV clinical trials 3.…”

Section: Discussionsupporting

confidence: 79%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

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Section: Discussionsupporting

confidence: 79%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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“…9 Fourth, time requirements are a frequent concern for everyone. 7,10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods such as community-based participatory research 11 and participatory action research. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them.…”

Section: Introductionmentioning

confidence: 99%

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Witteman

Dansokho

Colquhoun³

et al. 2018

J GEN INTERN MED

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Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication.Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations. INTRODUCTIONHealth research teams increasingly include patients, caregivers, clinicians, and other stakeholders whose primary careers are not health research. This may occur because team leaders are convinced of the merits of such an approach, because funders or publishers require it, or both. 1-4 Such partnerships are intended to increase the relevance of research to those who might benefit from it and thus to reduce research waste. 5 This is an excellent and laudable aim; however, there is relatively little practical guidance available about how to effectively conduct such partnered research.Previous reviews and evaluations demonstrate four points about conducting partnered research. First, research teams with patients, caregivers, and other stakeholder team members tend to involve these stakeholders more at earlier stages in the project than at later stages. 6,7 Second, people coming into projects without a research background may require orientation in order to participate fully. 8 Third, benefits of partnership may be difficult to formally assess. 9 Fourth, time requirements are a frequent concern for everyone. 7,10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods 558JGIM such as community-based participatory research 11 and participatory action research. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them. Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19...

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“…Our goal is to offer reflections, discussion and examples of the way researchers working in hospitals might adapt their methods to increase participatory and ethical community engagement within these settings. In doing so, we respond to calls for researchers to document and publish their experiences with community engagement (Forsythe et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting

et al. 2016

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Community-based participatory research (CBPR) is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with HIV and addictions issues. The structure of hospital-based care delivery required the team to account for participants' health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process.

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Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned

Cited by 245 publications

References 38 publications

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting

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