Chicago, IL; Sacramento, CA; Silver Spring, MD; and Durham, NC, capturing a sociodemographically diverse sample with specific attention to ensuring inclusion of Hispanic, African-American, and elderly participants. Of 1774 people recruited, 75% participated: 961 took part in a deliberative method and 377 participants comprised the RMO control group. To assess effectiveness of the deliberative methods overall and of individual methods, we evaluated whether mean pre-post changes on a knowledge and attitude survey were statistically different from the RMO control using ANCOVA. In addition, we calculated mean scores capturing participant views of the impact and value of deliberation. Participating in deliberation increased participants' knowledge of evidence and comparative effectiveness research and shifted participants' attitudes regarding the role of evidence in decision-making. When comparing each deliberative method to the RMO control group, all four deliberative methods resulted in statistically significant change on at least one knowledge or attitude measure. These findings were underscored by self-reports that the experience affected participants' opinions. Public deliberation offers unique potential for those seeking informed input on complex, values-laden topics affecting broad public constituencies.
Background
US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient‐centered evidence better aligned with real‐world clinical needs. The Patient‐Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health‐care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health‐care decision making.
Objective
To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI‐funded research projects and how such engagement changed their lives.
Methods
We conducted thematic analysis of open‐ended survey responses from 255 patients, family caregivers and individuals from advocacy and community‐based organizations who engaged as partners on 139 PCORI‐funded research projects focusing on a range of health conditions.
Results
Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health‐care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits.
Discussion and Conclusions
By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.
Background
Engaging patients and other stakeholders as partners in research offers promise in improving the relevance and usefulness of research findings.
Objective
To explore the influence and impact of patient and other stakeholder engagement on the planning and conduct of comparative effectiveness research studies.
Design
Qualitative study with virtual, hour-long semi-structured interviews.
Participants
Fifty-eight researchers and fifty-one partners from a diverse purposeful sample of fifty-eight studies funded by the Patient-Centered Outcomes Research Institute (PCORI).
Approach
Content and thematic analysis of interview data.
Key Results
Described as an integral, long-term part of the research process, engagement influenced all aspects of the design and execution of studies. Partner influence was also dynamic and iterative, taking different forms over the course of the study. Across studies, we identified 387 discrete examples of influence and classified each as one of five types of influence, derived inductively from the interview data: co-producing, redirecting, refining, confirming, and limited. Most projects exhibited multiple types of influence, with 50 researchers and 41 partners reporting two or more types of influence within a project. Of the 387 examples of stakeholder influence, 306 had at least one reported impact on the study. Such impacts included changes to reflect the needs and preferences of patients or clinicians, as well as impacts on study feasibility, study quality, engagement scope or quality, and study relevance. Both researchers and partners identified multiple types of impact within projects, with 42 researchers and 38 partners reporting two or more types within a project. Because of these observable impacts, researchers and partners described engagement as worthwhile.
Conclusions
Findings provide insights for funders and institutions supporting engagement, measurement efforts, and clinical researchers aiming to conduct engaged research and observe similar influences and impacts in their own studies.
Policy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views. The Community Forum Deliberative Methods Demonstration project, sponsored by the Agency for Healthcare Research and Quality, obtained informed public views on the role of evidence in health care decisions through seventy-six deliberative groups involving 907 people overall, in the period August-November 2012. Although participants perceived evidence as being essential to high-quality care, they also believed that personal choice or clinical judgment could trump evidence. They viewed doctors as central figures in discussing evidence with patients and key arbiters of whether to follow evidence in individual cases. They found evidence of harm to individuals or the community to be more compelling than evidence of effectiveness. These findings indicate that increased public understanding of evidence can play an important role in advancing evidence-based care by helping create policies that better reflect the needs and values of the public.
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