Browsing by Subject "Stakeholder engagement"

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    Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation
    (BMC, 2020-02-01) Petkovic, Jennifer; Riddle, Alison; Akl, Elie A.; Khabsa, Joanne; Lytvyn, Lyubov; Atwere, Pearl; Campbell, Pauline; Chalkidou, Kalipso; Chang, Stephanie M.; Crowe, Sally; Dans, Leonila; Jardali, Fadi El; Ghersi, Davina; Graham, Ian D.; Grant, Sean; Greer-Smith, Regina; Guise, Jeanne-Marie; Hazlewood, Glen; Janet, Janet; Katikireddi, S. Vittal; Langlois, Etienne V.; Lyddiatt, Anne; Maxwell, Lara; Morley, Richard; Mustafa, Reem A.; Nonino, Francesco; Pardo, Jordi Pardo; Pollock, Alex; Kevin, Kevin; Riva, John; Schünemann, Holger; Simeon, Rosiane; Smith, Maureen; Stein, Airton T.; Synnot, Anneliese; Tufte, Janice; White, Howard; Welch, Vivian; Concannon, Thomas W.; Tugwell, Peter; Social and Behavioral Sciences, School of Public Health
    Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation. METHODS: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation. DISCUSSION: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health.
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    PROTOCOL: Barriers and facilitators to stakeholder engagement in health guideline development: A qualitative evidence synthesis
    (Wiley, 2022-04-25) Magwood, Olivia; Riddle, Alison; Petkovic, Jennifer; Lytvyn, Lyubov; Khabsa, Joanne; Atwere, Pearl; Akl, Elie A.; Campbell, Pauline; Welch, Vivian; Smith, Maureen; Mustafa, Reem A.; Limburg, Heather; Dans, Leonila F.; Skoetz, Nicole; Grant, Sean; Concannon, Tom; Tugwell, Peter; Epidemiology, Richard M. Fairbanks School of Public Health
    Background: There is a need for the development of comprehensive, global, evidence-based guidance for stakeholder engagement in guideline development. Stakeholders are any individual or group who is responsible for or affected by health- and healthcare-related decisions. This includes patients, the public, providers of health care and policymakers for example. As part of the guidance development process, Multi-Stakeholder Engagement (MuSE) Consortium set out to conduct four concurrent systematic reviews to summarise the evidence on: (1) existing guidance for stakeholder engagement in guideline development, (2) barriers and facilitators to stakeholder engagement in guideline development, (3) managing conflicts of interest in stakeholder engagement in guideline development and (4) measuring the impact of stakeholder engagement in guideline development. This protocol addresses the second systematic review in the series. Objectives: The objective of this review is to identify and synthesise the existing evidence on barriers and facilitators to stakeholder engagement in health guideline development. We will address this objective through two research questions: (1) What are the barriers to multi-stakeholder engagement in health guideline development across any of the 18 steps of the GIN-McMaster checklist? (2) What are the facilitators to multi-stakeholder engagement in health guideline development across any of the 18 steps of the GIN-McMaster checklist? Search methods: A comprehensive search strategy will be developed and peer-reviewed in consultation with a medical librarian. We will search the following databases: MEDLINE, Cumulative Index to Nursing & Allied Health Literature (CINAHL), EMBASE, PsycInfo, Scopus, and Sociological Abstracts. To identify grey literature, we will search the websites of agencies who actively engage stakeholder groups such as the AHRQ, Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR), INVOLVE, the National Institute for Health and Care Excellence (NICE) and the PCORI. We will also search the websites of guideline-producing agencies, such as the American Academy of Pediatrics, Australia's National Health Medical Research Council (NHMRC) and the WHO. We will invite members of the team to suggest grey literature sources and we plan to broaden the search by soliciting suggestions via social media, such as Twitter. Selection criteria: We will include empirical qualitative and mixed-method primary research studies which qualitatively report on the barriers or facilitators to stakeholder engagement in health guideline development. The population of interest is stakeholders in health guideline development. Building on previous work, we have identified 13 types of stakeholders whose input can enhance the relevance and uptake of guidelines: Patients, caregivers and patient advocates; Public; Providers of health care; Payers of health services; Payers of research; Policy makers; Program managers; Product makers; Purchasers; Principal investigators and their research teams; and Peer-review editors/publishers. Eligible studies must describe stakeholder engagement at any of the following steps of the GIN-McMaster Checklist for Guideline Development. Data collection and analysis: All identified citations from electronic databases will be imported into Covidence software for screening and selection. Documents identified through our grey literature search will be managed and screened using an Excel spreadsheet. A two-part study selection process will be used for all identified citations: (1) a title and abstract review and (2) full-text review. At each stage, teams of two review authors will independently assess all potential studies in duplicate using a priori inclusion and exclusion criteria. Data will be extracted by two review authors independently and in duplicate according to a standardised data extraction form. Main results: The results of this review will be used to inform the development of guidance for multi-stakeholder engagement in guideline development and implementation. This guidance will be official GRADE (Grading of Recommendations Assessment, Development and Evaluation) Working Group guidance. The GRADE system is internationally recognised as a standard for guideline development. The findings of this review will assist organisations who develop healthcare, public health and health policy guidelines, such as the World Health Organization, to involve multiple stakeholders in the guideline development process to ensure the development of relevant, high quality and transparent guidelines.
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    "Research Jam": Engaging patients and other stakeholders through human-centered design to improve translational research
    (Cambridge University Press, 2022-11-14) Wiehe, Sarah E.; Moore, Courtney M.; Lynch, Dustin O.; Claxton, Gina; Bauer, Nerissa S.; Sanematsu, Helen; Pediatrics, School of Medicine
    Effective stakeholder engagement increases research relevance and utility. Though published principles of community-based participatory research and patient-centered outcomes research offer guidance, few resources offer effective techniques to engage stakeholders and translate their engagement into improvements in research process and outcomes. The Indiana Clinical and Translational Sciences Institute (Indiana CTSI) is home to Research Jam (RJ), an interdisciplinary team of researchers, project management professionals, and design experts, that employs human-centered design (HCD) to engage stakeholders in the research process. Establishing HCD services at the Indiana CTSI has allowed for accessible and innovative stakeholder-engaged research. RJ offers services for stakeholder-informed study design, measurement, implementation, and dissemination. RJ’s services are in demand to address research barriers pertaining to a diverse array of health topics and stakeholder groups. As a result, the RJ team has grown significantly with both institutional and extramural support. Researchers involved in RJ projects report that working with RJ helped them learn how to better engage with stakeholders in research and changed the way they approach working with stakeholders. RJ can serve as a potential model for effectively engaging stakeholders through HCD to improve translational research.
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    Unlocking success: community engagement for enhanced HIV care outcomes
    (Springer Nature, 2024-11-28) Wiehe, Sarah E.; Nelson, Tammie L.; Hawryluk, Bridget; Andres, Unai Miguel; Aalsma, Matthew C.; Rosenman, Marc B.; Butler, Michael S.; Harris, Michelle; Moore, Kem; Scott, C. Dana; Gharbi, Sami; Parks, Lisa; Lynch, Dustin; Silverman, Ross D.; Fortenberry, J. Dennis; Pediatrics, School of Medicine
    Background: Though social determinants are the primary drivers of health, few studies of people living with HIV focus on non-clinical correlates of insecure and/or fragmented connections with the care system. Our team uses linked clinical and multisector non-clinical data to study how residential mobility and connection to social services influence the HIV care continuum. We engage a diverse group of individuals living with HIV and other invested community members to guide and inform this research. Our objective is to generate consultant-informed, research-based interventions that are relevant to the community, and to share our engagement approach and findings so that other researchers can do the same. Methods: Our research team partnered with the Indiana Clinical and Translational Sciences Institute's Research Jam to develop and implement a human-centered design research plan to engage individuals with experience relevant to our research. We recruited a panel of consultants composed of people living with HIV and/or clinicians and individuals from agencies that provide medical and non-medical services to people living with HIV in Marion County, Indiana. To date, we have used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our future engagement and research activities. Results: Since the inception of the project, 48 consultants have joined the panel. Thirty-five continue to be actively engaged and have participated in one or more of the six sessions conducted to date. Consultants have helped guide and prioritize analyses, aided in identification of data missing from our ecosystem, helped interpret results, provided feedback on future interventions, and co-presented with us at a local health equity conference. Conclusions: We utilize community engagement to expand the scope of our research and find that the process provides value to both consultants and the research team. Human-centered design enhances this partnership by keeping it person-centered, developing empathy and trust between consultants and researchers, increasing consultant retention, and empowering consultants to collaborate meaningfully with the research team. The use of these methods is essential to conduct relevant, impactful, and sustainable research. We anticipate that these methods will be important for academic and public health researchers wishing to engage with and integrate the ideas of community consultants.