Browsing by Author "Smith, Maureen"

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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 We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders.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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    PROTOCOL: Guidance for stakeholder engagement in guideline development: A systematic review
    (Wiley, 2022-05-11) Petkovic, Jennifer; Riddle, Alison; Lytvyn, Lyubov; Khabsa, Joanne; Akl, Elie A.; Welch, Vivian; Magwood, Olivia; Atwere, Pearl; Graham, Ian D.; Grant, Sean; John, Denny; Vittal Katikireddi, Srinivasa; Langlois, Etienne; Mustafa, Reem A.; Todhunter‐Brown, Alex; Schünemann, Holger; Smith, Maureen; Stein, Airton T.; Concannon, Tom; Tugwell, Peter; Epidemiology, Richard M. Fairbanks School of Public Health
    This is the protocol for a Campbell systematic review. The objectives are as follows: to identify, describe, and summarize existing guidance and methods for multistakeholder engagement throughout the health guideline development process.
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    Returning negative results from large-scale genomic screening: Experiences from the eMERGE III network
    (Wiley, 2021) Finn, Kelsey Stuttgen; Lynch, John; Aufox, Sharon; Bland, Sarah; Chung, Wendy; Halverson, Colin; Hebbring, Scott; Hoell, Christin; Holm, Ingrid; Jarvik, Gail; Kullo, Iftikhar; Leppig, Kathleen; Myers, Melanie; Prows, Cynthia; Rasouly, Hila Milo; Singh, Rajbir; Weisner, Georgia; Williams, Janet; Wynn, Julia; Smith, Maureen; Sharp, Richard; Medicine, School of Medicine
    Population-based genomic screening has the potential to improve health outcomes by identifying genetic causes of disease before they occur. While much attention has been paid to supporting the needs of the small percentage of patients who will receive a life-altering positive genomic screening result that requires medical attention, little attention has been given to the communication of negative screening results. As there are currently no best practices for returning negative genomic screening results, we drew on experiences across the electronic medical records and genomics (eMERGE) III Network to highlight the diversity of reporting methods employed, challenges encountered in reporting negative test results, and "lessons learned" across institutions. A 60-item survey that consisted of both multiple choice and open-ended questions was created to gather data across institutions. Even though institutions independently developed procedures for reporting negative results, and had very different study populations, we identified several similarities of approach, including but not limited to: returning results by mail, placing results in the electronic health record via an automated process, reporting results to participants' primary care provider, and providing genetic counseling to interested patients at no cost. Differences in procedures for reporting negative results included: differences in terminology used to describe negative results, definitions of negative results, guidance regarding the meaning of negative results for participants and their family members, and recommendations for clinical follow up. Our findings highlight emerging practices for reporting negative genomic screening results and highlight the need to create patient education and clinical support tools for reporting negative screening results.