Early Experiences Engaging Patients Through Patient and Family Advisory Councils

Peikes, Deborah; O’Malley, Ann S.; Wilson, Claire; Crosson, Jesse C.; Gaddes, Rachel; Natzke, Brenda; Day, Timothy; Cromp, DeAnn; Keith, Rosalind E.; Little, Jasmine; Ralston, James D.

doi:10.1097/jac.0000000000000150

Cited by 18 publications

(18 citation statements)

References 5 publications

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“…At a high level, however, our findings suggest participants endorsed a delegate model of representation (where representatives act on the stated preferences of those represented) as compared to a trustee model (where representatives follow their own thoughts regarding the right action) . A delegate model requires PFACs to connect with their constituency, at least enough to learn their preferences . In prior studies, PFAC members have themselves expressed the desire to learn more about the preferences of other patients …”

Section: Discussionmentioning

confidence: 64%

“…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%

“…Prior studies of PFACs and related participatory bodies have focused on the perspectives of PFAC members or members of the health‐care administrative teams with whom they liaise . To our knowledge, few studies have assessed how a general patient population (ie non‐PFAC members) views PFACs.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 64%

Section: Introductionmentioning

confidence: 99%

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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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“…5 Patient family advisory councils (PFACs) are a wellestablished method of engaging patients to share personal experiences and collaborate with hospital staff and administrators on various patient-focused initiatives, and have been implemented across diverse healthcare settings, including cancer centers 6 and primary care settings. 7 PFACs have been introduced to enhance pediatric care in the emergency 8 and hospital settings. 9 PFACs have been associated with improved outcomes, including reducing patient falls, enhancing patient-provider communication, assisting in facilities design, and improving billing processes.…”

Section: Introductionmentioning

confidence: 99%

Integrating the patient and caregiver voice in the context of pediatric, adolescent, and young adult care: A family-centered approach

Featherston¹,

Rozo²,

Buzanga³

et al. 2018

Patient Experience Journal

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Family-centered care (FCC) is defined as an approach to care coordination founded in collaborative partnerships between healthcare providers, patients and their family caregivers. Amid the enthusiasm for FCC in the pediatric setting, opportunities have been identified to operationalize the engagement of pediatric, adolescent and young adult patients and their caregivers into decision making that translates not only to their healthcare, but also to the context in which care is provided, as well as the research informing their care. At a National Cancer Institute-designated comprehensive cancer center, the Children's Cancer Hospital was instrumental in designing and implementing patient and family engagement councils to inform institutional policies, guidelines, environment of care and research. The councils include: he Family Advisory Council, the Supportive Care Council, the Young Adult Advisory Council, and the Patient Advisory Council for Teens (imPACT). The development and outcomes of these councils is presented as an exemplar for patient and family engagement that translates to tangible healthcare delivery initiatives.

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“…4,6 In a similar parallel, many clinics in the United States have adopted patient advisory councils (PACs) as a mechanism to give patients a seat at the table. [7][8][9] At the same time, there is growing recognition of the importance of a robust QI curriculum within medical education. 10,11 Notably, scholars have found that active participation of medical trainees in QI, as opposed to passive classroom-based didactics, produces more meaningful learning about QI principles and methods.…”

mentioning

confidence: 99%

Incorporating the Patient Voice Into Practice Improvement:

Hsu

Contreras

Vollrath

et al. 2019

Fam Med

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Background and Objectives: Many primary care clinics rely on providers and staff to generate quality improvement (QI) ideas without explicitly including patients. However, without understanding patient perspectives, clinics may miss areas for improvement. We identified practice improvement opportunities using a medical student-driven pilot of QI design that incorporates the patient voice and explored provider/staff perceptions of patient perspectives. Methods: One medical student interviewed eight patients for their perspectives on QI opportunities at a university-based primary care practice. Two trainees independently coded interview transcripts using directed content analysis (final codebook: 11 themes) and determined frequency of mentions for each theme. We surveyed 11 providers/staff by asking them to select 5 of the 11 themes and place them in rank order based on their perceptions of patient concerns; their surveys were aggregated into one ranked list. Results: Patients most frequently identified the following themes as QI opportunities: relationship (ie, feeling of personal connection with providers/staff), specialty care, convenience, sustainability, and goal follow-up. While patients frequently identified relationship (rank=1) and goal follow-up (rank=3) as QI opportunities, the provider/staff top five list did not include relationship (rank=10) or goal follow-up (rank=7). Conclusions: Our study demonstrates two things: (1) there are areas of discordance between provider/staff perceptions and patient perspectives regarding practice improvement opportunities; and (2) medical students can participate meaningfully in the QI process. By harnessing patient perspectives with the help of medical trainees, clinics may better understand patient concerns and avoid potential QI blind spots.

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Early Experiences Engaging Patients Through Patient and Family Advisory Councils

Cited by 18 publications

References 5 publications

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

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

Integrating the patient and caregiver voice in the context of pediatric, adolescent, and young adult care: A family-centered approach

Incorporating the Patient Voice Into Practice Improvement:

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