How patient and community involvement in diabetes research influences health outcomes: A realist review.
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ABSTRACT: Background
Patient and public involvement in diabetes research is an international requirement, but little is known about the relationship between the process of involvement and health outcomes.Objective
This realist review identifies who benefits from different types of involvement across different contexts and circumstances. Search strategies Medline, CINAHL and EMBASE were searched to identify interventions using targeted, embedded or collaborative involvement to reduce risk and promote self-management of diabetes. People at risk/with diabetes, providers and community organizations with an interest in addressing diabetes were included. There were no limitations on date, language or study type.Data extraction and synthesis
Data were extracted from 29 projects using elements from involvement frameworks. A conceptual analysis of involvement types was used to complete the synthesis.Main results
Projects used targeted (4), embedded (8) and collaborative (17) involvement. Productive interaction facilitated over a sufficient period of time enabled people to set priorities for research. Partnerships that committed to collaboration increased awareness of diabetes risk and mobilized people to co-design and co-deliver diabetes interventions. Cultural adaptation increased relevance and acceptance of the intervention because they trusted local delivery approaches. Local implementation produced high levels of recruitment and retention, which project teams associated with achieving diabetes health outcomes.Discussion and conclusions
Achieving understanding of community context, developing trusting relationships across sectors and developing productive partnerships were prerequisites for designing research that was feasible and locally relevant. The proportion of diabetes studies incorporating these elements is surprisingly low. Barriers to resourcing partnerships need to be systematically addressed.
SUBMITTER: Harris J
PROVIDER: S-EPMC6803418 | biostudies-literature | 2019 Oct
REPOSITORIES: biostudies-literature
Publications
How patient and community involvement in diabetes research influences health outcomes: A realist review.
Harris Janet J Haltbakk Johannes J Dunning Trisha T Austrheim Gunhild G Kirkevold Marit M Johnson Maxine M Graue Marit M
Health expectations : an international journal of public participation in health care and health policy 20190708 5
<h4>Background</h4>Patient and public involvement in diabetes research is an international requirement, but little is known about the relationship between the process of involvement and health outcomes.<h4>Objective</h4>This realist review identifies who benefits from different types of involvement across different contexts and circumstances. Search strategies Medline, CINAHL and EMBASE were searched to identify interventions using targeted, embedded or collaborative involvement to reduce risk a ...[more]
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Project description:Introduction: Community engagement is increasingly recognized as a critical aspect of global health. Recent years have seen an expansion of community engagement activities linked to health research, but debates and inconsistencies remain about the aims of different types of engagement, mechanisms underpinning their implementation and impact, and influential contextual factors. Greater commitment to and consistency around community engagement by health research programs, implementers and funders requires a more coherent evidence base. This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts. Given the breadth and diversity of the literature on community engagement in health research, the review will initially focus on malaria research in low- and middle-income countries (LMICs) and draw on wider global health literature where needed. Methods and analysis: Community engagement in practice is often a complex set of interventions. We will conduct a realist review - a theory driven approach to evidence synthesis - to provide explanations for how and why community engagement with health research produces the pattern of outcomes observed across different contexts of application. We will consolidate evidence from a range of documents, including qualitative, quantitative and mixed method studies. The review will follow several stages: devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesizing and refining the programme theory, and reiteration of these steps as needed. Ethics and dissemination: A formal ethics review is not required for this literature review. Findings will be disseminated in a peer reviewed journal, through national and international conferences, and through a set of short briefings tailored for audiences with an interest in community engagement. Outputs and presentations will be informed by and feed into our network of community engagement experts. PROSPERO registration number: CRD42019125687.
| S-EPMC6611131 | biostudies-literature
Project description:Background:High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members' personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members' personal development. Method:Qualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members' personal development and, if so, how, why, and for whom. Results:Three CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members' personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework. Conclusions:Data analysis and consideration of the three CMO configurations suggests a refined middle range theory that 'The use of a portfolio as a framework for learning in a public forum will facilitate members' personal development if they value its use as a framework for learning'. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI. Plain English summary:Public engagement and involvement in health research is now well established and makes a valuable contribution to the research process. However, little is known about its impact on participants. This article investigates how involvement in a data-intensive health research public forum impacts on public forum members, rather than the research process. Personal involvement portfolios were used to support their involvement work and help evaluate if and how involvement in research activities enhanced members' personal development. Taking a realist evaluation approach, 'Context-Mechanism-Outcome' configurations were used to explore how membership of a public forum might enhance public forum members' personal development. The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. However, evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process.
| S-EPMC7325137 | biostudies-literature
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| S-EPMC4078283 | biostudies-literature
Project description:PurposeThe purpose of this study was to conduct a systematic evaluation of community-based participatory research (CBPR) interventions on diabetes outcomes. Understanding of effective CBPR interventions on diabetes outcomes is limited, and findings remain unclear.MethodsA reproducible search strategy was used to identify studies testing CBPR interventions to improve diabetes outcomes, including A1C, fasting glucose, blood pressure, lipids, and quality of life. Pubmed, PsychInfo, and CINAHL were searched for articles published between 2010 and 2020. Using a CBPR continuum framework, studies were classified based on outreach, consulting, involving, collaborating, and shared leadership.ResultsA total of 172 were screened, and a title search was conducted to determine eligibility. A total of 16 articles were included for synthesis. Twelve out of the 16 studies using CBPR approaches for diabetes interventions demonstrated statistically significant differences in 1 or more diabetes outcomes measured at a postintervention time point. Studies across the spectrum of CBPR demonstrated statistically significant improvements in diabetes outcomes.ConclusionsOf the 16 studies included for synthesis, 14 demonstrated statistically significant changes in A1C, fasting glucose, blood pressure, lipids, and quality of life. The majority of studies used community health workers (CHWs) to deliver interventions across group and individual settings and demonstrated significant reductions in diabetes outcomes. The evidence summarized in this review shows the pivotal role that CHWs and diabetes care and education specialists play in not only intervention delivery but also in the development of outward-facing diabetes care approaches that are person- and community-centered.
| S-EPMC7901040 | biostudies-literature
Project description:BackgroundPeer support has been suggested as an alternative or complement to professional support for mothers with perinatal mental health difficulties. The aim of this realist review was to synthesise the evidence on perinatal mental health peer support programmes outside mental health services, to understand what is it about community-based perinatal mental health peer support that works, for whom, in what circumstances, in what respects, and why.MethodsApplying realist methodology, an initial theoretical model was tested against evidence from empirical studies. 29 empirical studies were included, covering 22 antenatal and postnatal mental health interventions that offered one-to-one or group peer support, in person or by telephone. Data extraction identified the configurations of contexts (C), mechanisms (M) and outcomes (O) relevant to mothers' use of peer support and to the positive and negative effects of using peer support.Results13 C-M-O configurations explained take-up of peer support. These were based on mothers' perceptions that peer support would offer empathetic understanding and non-judgemental acceptance outside their social circle; their relationships with primary health professionals; their cultural background and perspectives on mental health; their desire for professional support; overcoming practical barriers; the format of the support; and the use of volunteers. A further 13 C-M-O configurations explained positive impact on mothers. These were based on receiving empathetic listening, acceptance, affirmation and normalisation; peers sharing ideas about self-care, coping, and services; peers using therapeutic techniques; the opportunity to give support to others; meaningful social relationships with volunteers and other mothers; and other benefits of attending a group. There were 8 C-M-O configurations explaining negative impact. These were based on lack of validation; self-criticism from downward and upward social comparison; a culture of negativity; peers being judgemental or directive; not feeling heard; peer support as a stressful social relationship; and distress at endings.ConclusionsPeer support works in complex ways that are affected by personal and social contexts. Providers, commissioners and evaluators can use this review to understand and maximise the valuable benefits of peer support, to minimise potential risks, and to devise ways of reaching mothers who do not currently engage with it.
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Project description:INTRODUCTION:This realist literature review, regarding active patient involvement in healthcare quality improvement (QI), seeks to identify possible mechanisms that contribute to success or failure. Furthermore, the paper outlines key considerations for organizing and supporting patient involvement in healthcare QI efforts. METHODS:Two literature searches were performed. Altogether, 1204 articles from a healthcare context were screened, focusing on improvement efforts that involve patients, healthcare professionals and/or managers and leaders. Among these, 107 articles fulfilled the chosen study selection criteria and were further analysed. Eighteen articles underwent a full realist review. In the realist synthesis, context-mechanism-outcome configurations were articulated as middle-range theories and organized thematically to generate a program theory on how active patient involvement in QI efforts might work. RESULTS:The articles exhibited a diversity of patient involvement approaches at different levels of healthcare organizations. To be successful, organizations' support of QI efforts that actively involved patients tailored the QI efforts to their context to achieve the desired outcomes, and involved the relevant microsystem members. Furthermore, it promoted interaction and partnership within the microsystem, and supported the behavioural change that follows. CONCLUSION:This realist synthesis generates a program theory for active patient involvement in QI efforts; active patient involvement can be a tool (resource), if tailored for interaction and partnership (reasoning), that leads to behaviour change (outcome) within healthcare QI efforts. The theory explains essential resource and reasoning mechanisms, and outcomes that together form guidance for healthcare organizations when managing active patient involvement in QI efforts.
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Project description:Background: Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to 'work', and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped. Methods: To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature , we conducted a realist review of CE with malaria research - a theory driven approach to evidence synthesis. Results: We found that community engagement relies on the development of provisional 'working relationships' across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing 'dominant health research paradigm context', such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research. Conclusions: The development of working relationships contributes to greater acceptance and participation in research by local stakeholders, who are particularly interested in research related access to health care and other benefits. At the same time, such relationships may involve an accommodation of some ethically problematic characteristics of the dominant health research paradigm, and thereby reproduce this paradigm rather than challenge it with a different logic of collaborative partnership.
| S-EPMC10444998 | biostudies-literature
Project description:ObjectivesPatient and public involvement (PPI) is argued to lead to higher quality health research, which is more relatable to and helps empower the public. We synthesised the evidence to look for examples of PPI in health research in low/middle-income countries (LMICs), looking at levels of involvement and impact. Additionally, we considered the impact of who was undertaking the research on the level of involvement and reported impact.DesignSystematic review.Data sourcesEMBASE, Medline and PsychINFO, along with hand-searching references, grey literature, Google search and expert advice.Eligibility criteriaAny health research with evidence of patient or public involvement, with no language restrictions dated from 1978 to 1 Dec 2017.Data extraction and synthesisData relating to stage and level of involvement, as well as impact, were extracted by one researcher (NC), and a coding framework was developed using an inductive approach to examine the impact of PPI on research. Extracted data were then independently coded by a second lay researcher (RK) to validate the data being collected. Discrepancies were referred to a third independent reviewer (MT) for review and consensus reached.ResultsSixty-two studies met the inclusion criteria. The review revealed the most common stage for PPI was in research planning, and the most common level of involvement was collaboration. Most studies did not provide evidence of effectiveness or elaborate on the impact of PPI, and they tended to report impact from the researcher's perspective. Where impact was mentioned, this generally related to increased relevance to the community, empowerment of participants and alterations in study design.ConclusionsThe literature describing approaches to and impact of PPI on LMIC health research is sparse. As PPI is essential to conducting high-quality research, it should be fully reported and evaluated at the end of the research project.
| S-EPMC6528003 | biostudies-literature
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.
| S-EPMC6614241 | biostudies-literature
Project description:IntroductionPatient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.MethodsWe searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full-text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.ResultsWe screened 22,009 titles/abstract, reviewed 375 full-text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co-design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.ConclusionsResults of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.Patient or public contributionTwo patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co-authors of this manuscript.
| S-EPMC10417078 | biostudies-literature