Patient, Family, and Community Advisory Councils in Health Care and Research: a Systematic Review

Oldfield, Benjamin J.; Harrison, Marcus A; Genao, Inginia; Greene, Ann; Pappas, Mary Ellen; Glover, Jan; Rosenthal, Marjorie S.

doi:10.1007/s11606-018-4565-9

Cited by 44 publications

(67 citation statements)

References 65 publications

(129 reference statements)

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“…However, some researchers remain unconvinced that patient involvement can make a positive difference. 9,10 Underserved patients 11 can be difficult to recruit as research partners, 12 or even as research participants. 13 This challenge is substantially exacerbated in behavioral health research because of distrust in research and stigma around these illnesses.…”

Section: Patients As Research Partnersmentioning

confidence: 99%

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Galvin¹,

Petersen

Subbian

et al. 2019

Appl Clin Inform

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Authentic inclusion and engagement of behavioral health patients in their care delivery and in the process of scientific discovery are often challenged in the health care system. Consequently, there is a growing need to engage with and better serve the needs of behavioral health patients, particularly by leveraging health information technologies. In this work, we present rationale and strategies for improving patient engagement in this population in research and clinical care. First, we describe the potential for creating meaningful patient–investigator partnerships in behavioral health research to allow for cocreation of knowledge with patients. Second, in the context of behavioral health services, we explore the utility of sharing clinical notes to promote patients' agency in care delivery. Both lines of inquiry are centered in a Learning Health System model for behavioral health, where patients are agents in enhancing the therapeutic alliance and advancing the process of knowledge generation. Recommendations include genuinely democratizing the health care system and biomedical research enterprise through patient-centered information technologies such as patient portals. In research and technology development, we recommend seeking and tailoring behavioral health patients' involvement to their abilities, promoting patient input in data analysis plans, evaluating research and informatics initiatives for patients and clinicians, and sharing success and research findings with patients. In clinical practice, we recommend encouraging patients to read behavioral health notes on portals, engaging in proactive communication regarding note content, assessing outcomes including stress and anxiety in response to note content, and working with technology providers to support note-sharing governance and deployment.

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Section: Patients As Research Partnersmentioning

confidence: 99%

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Galvin¹,

Petersen

Subbian

et al. 2019

Appl Clin Inform

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“…However, PFACs’ potential may be underutilized. While case studies suggest how PFACs could improve the safety and quality of patient care, systematic and structured reviews have repeatedly demonstrated a lack of rigorous evaluation and evidence of such impact . Much work remains to ensure PFACs can further patient‐ and family‐centred change in diverse health‐care settings …”

Section: Introductionmentioning

confidence: 99%

Who represents me? A patient‐derived model of patient engagement via patient and family advisory councils (PFACs)

Dukhanin

Feeser

Berkowitz

et al. 2019

Health Expectations

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Background: Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). Objective: To obtain rich insights about what patients who are not PFAC members expect of PFACs. Design: From July to September 2018, we conducted a qualitative study using focus groups. Setting and participants: We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. Approach: Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. Results: Forty-two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio-economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives' diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems.Conclusions: Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs' activities. Attention should be given to improving and measuring patients' awareness of, and interactions with, their patient representatives. | 149DUKHANIN et Al.

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“…Historically, patient and family advisory councils were convened to enhance the user experience and patient and family support services in the context of clinical care [1][2][3][4][5][6][7]. In recent years, patient, family, and community advisory councils (PFACs) have been convened to help ensure that clinical trials and health research studies are designed with patients and communities in mind [8][9][10][11][12]. Often, these research-specific PFACs are created in the hope that they will improve the quality of research in general and recruitment and retention rates in particular [9,10,12].…”

Section: Introductionmentioning

confidence: 99%

“…Despite growing support for PFACs as a means of promoting patient engagement, the literature on the efficacy of PFACs across health care and research contexts remains limited [10,13]. In particular, there is a shortage of data regarding how health systems select patients to serve on PFACs, both for clinical care and research purposes, as well as which methodologies constitute best practice [4,10,13]. In 2018, Oldfield et al published a systematic review of the PFACs in health care and research that included methods for recruiting PFAC members [10].…”

Section: Introductionmentioning

confidence: 99%

An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion

Bougrab¹,

Trachtman³

et al. 2019

J. Clin. Trans. Sci.

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In 2017, the NYU Clinical and Translational Science Institute’s Recruitment and Retention Unit created a Patient Advisory Council for Research (PACR) to provide feedback on clinical trials and health research studies. We collaborated with our clinical research informatics team to generate a random sample of patients, based on the International Classification of Diseases, Tenth Revision codes and demographic factors, for invitation via the patient portal. This approach yielded in a group that was diverse with regard to age, race/ethnicity, sex, and health conditions. This report highlights the benefits and limitations of using an electronic health record-based strategy to identify and recruit members for a PACR.

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Patient, Family, and Community Advisory Councils in Health Care and Research: a Systematic Review

Cited by 44 publications

References 65 publications

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Who represents me? A patient‐derived model of patient engagement via patient and family advisory councils (PFACs)

An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion

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