Patient and Family Advisory Councils for Research: Recruiting and Supporting Members From Diverse and Hard-to-Reach Communities.

OBJECTIVE: To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs). BACKGROUND: Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem. METHODS: A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers. RESULTS: Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership. CONCLUSION: Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.

BACKGROUND: Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. OBJECTIVE: The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. MAIN RESULTS: We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. DISCUSSION AND CONCLUSIONS: Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research.

OBJECTIVE: The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context. METHODS: We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data. RESULTS: Eighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training. CONCLUSION: Barriers to engaging PFAC members in research include patients' negative perceptions of research and researchers' lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement.

Implementing a pragmatic framework for authentic patient-researcher partnerships in clinical research.

In response to the creation of the Patient-Centered Outcomes Research Institute in 2010, researchers have begun to incorporate patient and family stakeholders into the research process as equal partners, bringing their unique perspectives and experiences to the table. Nonetheless, there is a dearth of literature around how best to engage patients and families and many barriers to doing so effectively. This paper outlines a pragmatic framework of collaborative engagement and partnership between research investigators and patient and family advisors from existing patient and family advisory councils (PFACs) at an academic medical center. This framework includes the role for each party throughout the clinical research process (launch, hypothesis, specific aims, measures/methods, results, interpretations/recommendation and dissemination).

Implementing Patient Family-Centered Care Grand Rounds Using Patient/Family Advisor Narratives.

With the emerging trend of patient family-centered care in health care, it is essential that physicians be exposed to patient and family perspectives of care during medical education and training. Grand Rounds provides an ideal format for physicians to learn about patient family-centered care. At Brigham and Women's Hospital, we sought to bring the voice of the patient to Patient Family-Centered Grand Rounds in order to expose clinicians to rich narratives describing the medical care received by patients/families and to ultimately change physician practice to reflect patient family-centered principles. We conducted a clinician survey and found promising results indicating that patient/family narratives can be effective at educating physicians about patient family-centered care.