Transforming the experience of illness into action – Patient and spouses experiences of involvement in a patient and family advisory council

Missel, Malene; Hansen, Malene Haugaard; Petersson, Nadja Buch; Højskov, Ida Elisabeth; Borregaard, Britt

doi:10.1016/j.pec.2020.11.025

Cited by 6 publications

(13 citation statements)

References 23 publications

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“…10 Despite the many benefits of patient and family engagement, PACs/PFACs are not always used optimally. Previous research on PACs/PFACs outside of LHNs has spoken to their positive perception, positive and empowering experiences for patients/families, providers, and the system/institution, resources or policies that are shaped by these councils, and the role of an inclusive culture to sustain such councils 2,[11][12][13][14][15][16] ; as Niehaus 13 succinctly wrote, PAC/PFACs have unique perspectives and abilities to identify the "blind spots" and can harness the power of personal narratives in effecting change in the systems for other patients and families. The lived experiences of patients and families allow them to see and feel things in their care that providers may not be sensitive to and therefore may remain overlooked and unaddressed.…”

Section: Introductionmentioning

confidence: 99%

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

Huwe,

Woolf,

David

et al. 2023

Learning Health Systems

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IntroductionPatient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means—and what successful patient engagement means—are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs.MethodsSeveral co‐authors (Madeleine Huwe, Becky Woolf, Jennie David) are former ImproveCareNow (ICN) PAC members, and we integrate a narrative review of the extant literature and a case study of our lived experiences as former ICN PAC members. We present nuanced themes of successful patient engagement from our lived experiences on ICN's PAC, with illustrative quotes from other PAC members, and then propose themes and metrics to consider in patient engagement across LHNs.ResultsSuccessful patient engagement in our experiences with ICN's PAC reaches beyond the “levels of engagement” previously described in the literature. We posit that our successful patient/PAC engagement experiences with ICN represent key mechanisms that could be applied across LHNs, including (1) personal growth for PAC members, (2) PAC internal engagement/community, (3) PAC engagement and presence within the LHN, (4) local institutional engagement for those who participate in the LHN, and (5) tangible resources/products from PAC members.ConclusionPatient engagement in LHNs, like ICN, holds significant power to meaningfully shape and co‐produce healthcare systems, and engagement is undervalued and conceptualized dichotomously (eg, engaged or not engaged). Reconceptualizing successful patient/PAC engagement is critical in ongoing efforts to study, support, and understand mechanisms of sustainable and successful patient engagement. Having a modern, multidimensional definition for successful patient engagement in LHNs can support efforts to increase underrepresented voices in PACs, measure and track successful multidimensional patient engagement, and study how successful patient engagement may impact outcomes for patients and LHNs.

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Section: Introductionmentioning

confidence: 99%

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

Huwe,

Woolf,

David

et al. 2023

Learning Health Systems

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“…These included, a welcoming environment, opportunities for providing feedback, and offering meaningful tasks. 22 , 25 , 27 Additional enablers, such as providing a mentor, offering reimbursement, and a flexible meeting schedule were considered important by a majority of our sample. For all of these enablers, there were no statistical differences between advising and non‐advising caregivers.…”

Section: Discussionmentioning

confidence: 99%

“…Many of the enablers to advisory role participation/satisfaction suggested in previous research were considered important by the majority our sample. These included, a welcoming environment, opportunities for providing feedback, and offering meaningful tasks 22,25,27 . Additional enablers, such as providing a mentor, offering reimbursement, and a flexible meeting schedule were considered important by a majority of our sample.…”

Section: Discussionmentioning

confidence: 99%

“…Previous research (combining caregivers and patient perspectives or not including the caregiver perspective) has highlighted that important enablers for PFAC engagement include factors such as: creating a trusting environment, allowing equal partnerships, providing feedback about involvement, accommodating additional needs, providing accessible communication, and producing meaningful results. 2 , 21 , 22 , 23 , 24 , 25 It is unclear whether such aspects would be equally important to caregivers. Challenges that prevent advisory role engagement, typically referred to as “hindrances,” include feeling unwell, lack of compensation, limited availability for scheduled meeting times, inadequate communication, and lack of a dedicated team member to manage engagement.…”

Section: Introductionmentioning

confidence: 99%

“…In this context, “enablers” are factors that allow for and/or improve meaningful collaboration between institutions and advisors. Previous research (combining caregivers and patient perspectives or not including the caregiver perspective) has highlighted that important enablers for PFAC engagement include factors such as: creating a trusting environment, allowing equal partnerships, providing feedback about involvement, accommodating additional needs, providing accessible communication, and producing meaningful results 2,21–25 . It is unclear whether such aspects would be equally important to caregivers.…”

Section: Introductionmentioning

confidence: 99%

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Benefits and barriers to engagement of mental health caregivers in advisory roles: Results from a cross‐sectional survey

Clark

Dorland

Jaworska

et al. 2023

Health Science Reports

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Background and Aims: Mental health institutions and community organizations have had difficulty recruiting patients and caregivers onto their Patient, Family, and Community Advisory Committees (PFACs). Previous research has focused on barriers and enablers of engaging patients and caregivers who have advisory experience. This study acknowledges the experiential difference between patients and caregivers by focusing only on caregivers; further, we compare the barriers and enablers between advising versus non-advising caregivers of loved ones with mental illness. Methods: Data from a cross-sectional survey codesigned by researchers, staff, clients, and caregiver affiliated with a tertiary mental health center were completed by n = 84 caregivers (n = 40 past/current PFAC advising caregivers; n = 44 non-advising caregivers).Results: Caregivers were disproportionately female and late middle-aged. Advising and non-advising caregivers differed on employment status. There were no differences of the demographics of their care-recipients. More non-advising caregivers reported being hindered from PFAC engagement by family-related duties and interpersonal demands. Finally, more advising caregivers considered being publicly acknowledged as important.Conclusions: Advising and non-advising caregivers of loved ones with mental illness were similar in demographics and in reporting the enablers and hindrances that impact PFAC engagement. Nevertheless, our data highlights specific considerations that institutions/organizations should consider when recruiting and retaining caregivers on PFACs.

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Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review

Westerink,

Oirbans,

Garvelink

et al. 2023

Health Policy

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Transforming the experience of illness into action – Patient and spouses experiences of involvement in a patient and family advisory council

Cited by 6 publications

References 23 publications

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

Benefits and barriers to engagement of mental health caregivers in advisory roles: Results from a cross‐sectional survey

Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review

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