Demographic Characteristics Among Members of Patient Family Advisory Councils at a Pediatric Health System.
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SUBMITTER: Montalbano A
PROVIDER: S-EPMC8573511 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
Publications
Demographic Characteristics Among Members of Patient Family Advisory Councils at a Pediatric Health System.
Montalbano Amanda A Chadwick Sheryl S Miller DeeJo D Taff Kathryn K De Miranda Evelyn Donis ED Pina Kimberly K Bradley-Ewing Andrea A
Journal of patient experience 20211105
Patient Family Advisory Councils (PFACs) are groups of patients, families, and clinical health system leaders collaborating to improve the quality, safety, and experience of care. Best practices encourage PFAC membership to reflect the diversity of the communities served. A cross-sectional survey was conducted from September 2019 to January 2020 collecting demographic characteristics of the members of a pediatric health system's 17 PFACs. Of the 93 respondents (71.5%), notable inequities were ra ...[more]
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Project description:BackgroundPatient-centeredness is a characteristic of high-quality medical care and requires engaging community members in health systems' decision-making. One key patient engagement strategy is patient, family, and community advisory boards/councils (PFACs), yet the evidence to guide PFACs is lacking. Systematic reviews on patient engagement may benefit from patient input, but feasibility is unclear.MethodsA team of physicians, researchers, and a PFAC member conducted a systematic review to examine the impact of PFACs on health systems and describe optimal strategies for PFAC conduct. We searched MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and Social Science Citation Index from inception through September 2016, as well as pre-identified websites. Two reviewers independently screened and abstracted data from studies, then assessed randomized studies for risk of bias and observational studies for quality using standardized measures. We performed a realist synthesis-which asks what works, for whom, under what circumstances-of abstracted data via 12 monthly meetings between investigators and two feedback sessions with a hospital-based PFAC.ResultsEighteen articles describing 16 studies met study criteria. Randomized studies demonstrated moderate to high risk of bias and observational studies demonstrated poor to fair quality. Studies engaged patients at multiple levels of the health care system and suggested that in-person deliberation with health system leadership was most effective. Studies involving patient engagement in research focused on increasing study participation. PFAC recruitment was by nomination (n = 11) or not described (n = 5). No common measure of patient, family, or community engagement was identified. Realist synthesis was enriched by feedback from PFAC members.DiscussionPFACs engage communities through individual projects but evidence of their impact on outcomes is lacking. A paucity of randomized controlled trials or high-quality observational studies guide strategies for engagement through PFACs. Standardized measurement tools for engagement are needed. Strategies for PFAC recruitment should be investigated and reported. PFAC members can feasibly contribute to systematic reviews.Registration and funding sourceA protocol for record eligibility was developed a priori and was registered in the PROSPERO database of systematic reviews (registration number CRD42016052817). The Department of Veterans Affairs' Office of Academic Affiliations, through the National Clinician Scholars Program, funded this study.
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Project description:BackgroundDespite 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).ObjectiveTo obtain rich insights about what patients who are not PFAC members expect of PFACs.DesignFrom July to September 2018, we conducted a qualitative study using focus groups.Setting and participantsWe 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.ApproachUsing grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs.ResultsForty-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.ConclusionsEliciting 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.
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Project description:BackgroundHealth professionals and public health experts in maternal and newborn health encourage women to deliver at health facilities in an effort to reduce maternal and newborn mortality. In the existing literature, there is scant information on how migration, family members and community influence facility delivery. This study addresses this knowledge gap using 10 years of longitudinal surveillance data from a rural district of Tanzania.MethodsMultilevel logistic regression was used to quantify the influence of hypothesized migration, family and community-level factors on facility delivery while adjusting for known confounders identified in the literature. We report adjusted odds ratios (AOR).ResultsOverall, there has been an increase of 14% in facility delivery over the ten years, from 63% in 2001 to 77% in 2010 (p?<?.001). Women residing in households with female migrants from outside their community were more likely to give birth in a facility AOR?=?1.2 (95% CI 1.11-1.29). Furthermore, the previous facility delivery of sisters and sisters-in-law has a significant influence on women's facility delivery; AOR?=?1.29, 95% CI 1.15-1.45 and AOR?=?1.7, 95% CI 1.35-2.13 respectively. Community level characteristics play a role as well; women in communities with higher socioeconomic status and older women of reproductive age had increased odds of facility delivery; AOR?=?2.37, 95% CI 1.88-2.98 and AOR?=?1.17, 95% CI 1.03-1.32 respectively.ConclusionAlthough there has been an increase in facility delivery over the last decade in Rufiji, this study underscores the importance of female migrants, family members and community in influencing women's place of delivery. The findings of this study suggest that future interventions designed to increase facility delivery must integrate person-to-person facility delivery promotion, especially through women of the community and within families. Furthermore, the results suggest that investment in formal education of the community and increased community socio-economic status may increase facility delivery.
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Project description:Current scholarship often concludes that technical expertise is one of the most important commodities for interest groups wishing to gain access to political-administrative venues. Less attention has been given to politicization and the scope of societal support that interest groups bring to bear. Specifically, I hypothesize that the capacity of interest groups to supply broad societal support is decisive for gaining access in highly politicized policy domains. To test this expectation, the article combines a mapping of interest group membership in 616 Belgian advisory councils with survey data from more than 400 organized interests. The empirical analyses demonstrate that interest groups with broad support are more likely to gain access to advisory councils in highly politicized policy domains, but this effect is negatively moderated when interest groups involve their constituencies intensely in advocacy processes.
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Project description:IntroductionPediatric lower urinary tract symptoms (LUTS) are highly prevalent in neurologically healthy school-aged children. However, no evidence-based programs exist to prevent or treat LUTS in the community setting. To address this, we established the first community advisory board (CAB) that aims to identify individual and societal structures impacting pediatric bladder health in Northern California's Bay Area and co-design culturally relevant bladder health interventions.MethodsProbability and non-probability sampling methods were used to recruit community stakeholders to the CAB. Our final CAB comprised of two parents, two community health workers, one educator, one pediatric urology registered nurse, and one pediatrician. The CAB met quarterly during the 1-year study period.ResultsBi-directional feedback identified community-level barriers to bladder health, particularly in the school environment, and the need for tailored resources to teach children and families about healthy bladder behaviors.DiscussionThe CAB co-designed school-based bladder health interventions, including bladder health posters, and provided feedback on three school-based research study proposals. The CAB will continue to guide and inform future community-engaged research efforts.
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Project description:BackgroundIn 2018, the Heart and Stroke Foundation of Canada transformed its approach to organizational strategic planning and priority-setting. The goal was to generate impact from bench to bedside to community, to improve the health of Canadians. It engaged researchers, clinician scientists, health systems leaders, and community members including people with lived experience (PWLE) on six Mission Critical Area (MCA) councils, each of which was co-chaired by a researcher or clinician scientist and a person with lived experience. Together, council members were tasked with providing advice to Heart & Stroke about the most relevant and impactful priorities of our time. The aim of this research was to explore the value of the MCA councils to Heart & Stroke, and to council members themselves. The research questions focused on understanding the process of managing and participating on the councils, the challenges and outcomes.Methods Using an integrated knowledge translation approach, we conducted a case study with developmental evaluation over a 2-year time period (2018-2020). We collected qualitative data from various sources (Heart & Stroke team responsible for managing the councils, council co-chairs, council members, and key informants). We collected documents and analysed them for contextual background.Results Participants noted that the MCA councils continuously evolved over the 2 years in various ways: from an uncertain direction to a concrete one, better integrating the voice of PWLE, and increased cohesiveness within and across MCA councils. This evolution was achieved in parallel with successes and challenges at three levels: the MCA councils and its members, Heart & Stroke, and Canadians. The MCA councils were disbanded in 2020, yet learnings, developments, initiatives and established partnerships remain as their legacy.Conclusions Heart & Stroke's intended objectives for the MCA councils, to promote engagement and dialogue among community members including PWLE, clinician scientists, and researchers, and to provide advice into Heart & Stroke's strategic renewal process, were achieved. This collaborative structure and process for PWLE engagement within a community of multidisciplinary clinician scientists and researchers is possible yet requires flexibility, commitment to stakeholder relationship management, and considerable resources. These findings may be helpful for other not-for-profit and funding organizations interested in engaging the public and other stakeholders into their organizational activities.
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Project description:BACKGROUND:Health Canada supplements its in-house expertise on pharmacotherapy and pharmaceutical policy through the use of scientific/expert advisory committees and scientific/expert advisory panels. This study was undertaken to examine the interests of the members of these Health Canada advisory bodies. METHODS:This was an observational study of the financial and intellectual interests of members of Health Canada's scientific/expert advisory committees and panels. The following information was extracted from Health Canada websites in December 2018: member's name, name of committee/panel, direct and indirect financial interests, and intellectual interests. Information extracted about the committees and panels included the number of meetings for which a record of proceedings was available and the topics discussed at the meetings. RESULTS:Of 81 unique committee and panel members, 12 declared a direct financial interest, 56 an indirect financial interest and 65 an intellectual interest. Five of 11 committees and panels had people who declared a direct financial interest. All 11 advisory bodies had members who declared indirect financial interests (n = 62) and intellectual interests (n = 81). Six of the 11 committees and panels had a majority of members who declared a direct or indirect financial interest. In the 10 advisory body meetings for which information was available, individual products were rarely discussed but recommendations from all but 1 of the meetings could potentially have affected sales. INTERPRETATION:Only a minority of members of Health Canada's advisory committees and panels declared direct financial interests but the majority of members of a majority of the advisory bodies declared indirect financial and intellectual interests. Because of the lack of individual voting records it was not possible to determine if financial or intellectual interests influenced voting patterns.
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Project description:ObjectivesThe objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias.DesignA scoping review.SettingThis scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria.Primary and secondary outcome measuresExplore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias.ResultsThe final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias.ConclusionWe conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.
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