An evaluation of stakeholder engagement in comparative effectiveness research: lessons learned from SWOG S1415CD.
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SUBMITTER: Bell-Brown A
PROVIDER: S-EPMC9832319 | biostudies-literature | 2022 Dec
REPOSITORIES: biostudies-literature
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An evaluation of stakeholder engagement in comparative effectiveness research: lessons learned from SWOG S1415CD.
Bell-Brown Ari A Watabayashi Kate K Kreizenbeck Karma K Ramsey Scott D SD Bansal Aasthaa A Barlow William E WE Lyman Gary H GH Hershman Dawn L DL Mercurio Anne Marie AM Segarra-Vazquez Barbara B Kurttila Florence F Myers Jamie S JS Golenski John D JD Johnson Judy J Erwin Robert L RL Walia Guneet G Crawford Jeffrey J Sullivan Sean D SD
Journal of comparative effectiveness research 20221115 18
<b>Aim:</b> Stakeholder engagement is central to comparative effectiveness research yet there are gaps in definitions of success. We used a framework developed by Lavallee <i>et al.</i> defining effective engagement criteria to evaluate stakeholder engagement during a pragmatic cluster-randomized trial. <b>Methods:</b> Semi-structured interviews were developed from the framework and completed to learn about members' experiences. Interviews were analyzed in a deductive approach for themes related ...[more]
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Project description:BackgroundStakeholder engagement is important from the management point of view to capture knowledge, increase ownership, reduce conflict, encourage partnership, as well as to develop an ethical perspective that facilitates inclusive decision making and promotes equity. However, there is dearth of literature in the process of stakeholder engagement. The purpose of this paper is to describe the process of increasing stakeholder engagement and highlight the lessons learnt on stakeholder engagement while designing, implementing, and monitoring a study on diabetes and hypertension prevention in workplace settings in Nepal.MethodologyWe identified the stakeholders based on the 7P framework: Patients and public (clients), providers, payers, policy makers, product makers, principal investigators, and purchasers. The identified stakeholders were engaged in prioritization of the research questions, planning data collection, designing, implementing, and monitoring the intervention. Stakeholders were engaged through focus group discussions, in-depth interviews, participatory workshops, individual consultation, information sessions and representation in study team and implementation committees.ResultsThe views of the stakeholders were synthesized in each step of the research process, from designing to interpreting the results. Stakeholder engagement helped to shape the methods and plan, and process for participant's recruitment and data collection. In addition, it enhanced adherence to intervention, mutual learning, and smooth intervention adoption. The major challenges were the time-consuming nature of the process, language barriers, and the differences in health and food beliefs between researchers and stakeholders.ConclusionIt was possible to engage and benefit from stakeholder's engagement on the design, implementation and monitoring of a workplace-based hypertension and diabetes management research program in Nepal.
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Project description:We conducted a review of the peer-reviewed literature since 2003 to catalogue reported methods of stakeholder engagement in comparative effectiveness research and patient-centered outcomes research.We worked with stakeholders before, during and after the review was conducted to: define the primary and key research questions; conduct the literature search; screen titles, abstracts and articles; abstract data from the articles; and analyze the data. The literature search yielded 2,062 abstracts. The review was conducted on 70 articles that reported on stakeholder engagement in individual research projects or programs.Reports of stakeholder engagement are highly variable in content and quality. We found frequent engagement with patients, modestly frequent engagement with clinicians, and infrequent engagement with stakeholders in other key decision-making groups across the healthcare system. Stakeholder engagement was more common in earlier (prioritization) than in later (implementation and dissemination) stages of research. The roles and activities of stakeholders were highly variable across research and program reports.To improve on the quality and content of reporting, we developed a 7-Item Stakeholder Engagement Reporting Questionnaire. We recommend three directions for future research: 1) descriptive research on stakeholder-engagement in research; 2) evaluative research on the impact of stakeholder engagement on the relevance, transparency and adoption of research; and 3) development and validation of tools that can be used to support stakeholder engagement in future work.
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Project description:Stakeholder engagement in research is widely advocated as a tool to integrate diverse knowledge and perspectives in the management of health threats while addressing potential conflicts of interest. Although guidelines for stakeholder engagement exist in public health and environmental sciences, the feasibility of actionable decisions based on scientific analyses and the lessons learned from the stakeholder engagement in the process co-creation of knowledge have been rarely discussed in One Health literature and veterinary sciences. Risk maps and risk regionalization using spatiotemporal epidemiological/analytical tools are known to improve risk perception and communication. Risk maps are useful when informing policy and management decisions on quarantine, vaccination, and surveillance intended to prevent or control threats to human, animal, or environmental health interface (i.e., One Health). We hypothesized that researcher-stakeholder engagement throughout the research process could enhance the utility of risk maps; while identifying opportunities to improve data collection, analysis, interpretation, and, ultimately, implementation of scientific/evidence-based management and policy measures. Three case studies were conducted to test this process of co-creation of scientific knowledge, using spatiotemporal epidemiological approaches, all related to One Health problems affecting Minnesota. Our interpretation of the opportunities, challenges, and lessons learned from the process are summarized from both researcher and stakeholder perspectives. By sharing our experience we intend to provide an understanding of the expectations, realizations, and "good practices" we learned through this slow-moving iterative process of co-creation of knowledge. We hope this contribution benefits the planning of future transdisciplinary research related to risk map-based management of One Health problems.
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Project description:BackgroundPatients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact.ObjectiveWe aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned.DesignA self-report instrument was completed by researchers between 6 and 12 months following project initiation.ParticipantsForty-seven principal investigators or their designees (94 % response rate) participated in the study. MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured.Key resultsMost (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as "critically important" facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders' practical needs.ConclusionsPCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base.
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Project description:The current health-care environment is demanding evidence-based medicine that relies on clinical trials as the basis for decisions. Clinician investigators are more often finding that they are personally responsible for coordinating large, multisite trials. We present strategies for successful implementation and management of multisite clinical trials and knowledge gained through an international, multisite randomized clinical trial. Topics include team composition, regulatory requirements, study organization and governance, communication strategies, recruitment and retention efforts, budget, technology transfer, and publication.
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Project description:Introduction Medical colleges globally have student organizations that serve to enable students’ involvement in research. However, details of their approach and activities are seldom published to serve as learning for student organizations in other settings. The Student Research Forum (SRF), a student organization based at a private medical school in Pakistan aims to facilitate students in acquiring research skills. Following the observation of a downward trajectory of student initiative and interest, SRF leadership restructured the organization and improve its impact. This study describes the development and implementation evaluation of the interventions. Methodology The operational framework was revised using the Theory of Change by the core group. Major interventions included enhanced social media and outreach coordination, research workshops, journal clubs, and mentorship to increase research output, mentorship opportunities, and knowledge of medical research; ultimately improving quality in research. The outcomes generated over the course of the study’s duration from July 2019 to September 2021 were analyzed using the process metrics of reach, adoption, and efficacy. Results As a result of the interventions, SRF expanded its reach by conducting a total of 41 events during the duration of the study, facilitated by social media growth on each of SRF’s online platforms, with a 300% increase in followers on Facebook, and a nationwide network of 91 student ambassadors. An annual workshop series taught research skills to more than 3800 participants. Students leading their own events, SRF featuring international speakers, and the abstracts submitted to SRF’s annual conference, along with the conference’s reach of 10,000 students, are seen as improvements in the ToC-informed interventions’ adoption. The efficacy of the interventions manifested as the REACH program allocated 56 research projects to vetted applicants. Conclusion The applied interventions have accelerated SRF’s progress towards achieving its long-term outcome of increased quality in research as translated by increased research output quantity, mentorship, and knowledge of medical research. Further evaluation is required to assess the success of the ToC. As SRF continues to grow, a continued analysis of the implementation outcomes is imperative to gauge its effectiveness.
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Project description:ObjectiveEmbedding researchers within health systems results in more socially relevant research and more effective uptake of evidence into policy and practice. However, the practice of embedded health service research remains poorly understood. We explored and assessed the development of embedded participatory approaches to health service research by a health research team in Kenya highlighting the different ways multiple stakeholders were engaged in a neonatal research study.MethodsWe conducted semistructured qualitative interviews with key stakeholders. Data were analysed thematically using both inductive and deductive approaches.SettingOver recent years, the Health Services Unit within the Kenya Medical Research Institute (KEMRI)-Wellcome Trust Research Programme in Nairobi Kenya, has been working closely with organisations and technical stakeholders including, but not limited to, medical and nursing schools, frontline health workers, senior paediatricians, policymakers and county officials, in developing and conducting embedded health research. This involves researchers embedding themselves in the contexts in which they carry out their research (mainly in county hospitals, local universities and other training institutions), creating and sustaining social networks. Researchers collaboratively worked with stakeholders to identify clinical, operational and behavioural issues related to routine service delivery, formulating and exploring research questions to bring change in practice PARTICIPANTS: We purposively selected 14 relevant stakeholders spanning policy, training institutions, healthcare workers, regulatory councils and professional associations.ResultsThe value of embeddedness is highlighted through the description of a recently completed project, Health Services that Deliver for Newborns (HSD-N). We describe how the HSD-N research process contributed to and further strengthened a collaborative research platform and illustrating this project's role in identifying and generating ideas about how to tackle health service delivery problems CONCLUSIONS: We conclude with a discussion about the experiences, challenges and lessons learned regarding engaging stakeholders in the coproduction of research.
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Project description:Patients, providers and policy-makers rely heavily on comparative effectiveness research (CER) when making complex, real-world medical decisions. In particular, Medicaid providers and policy-makers face unique challenges in decision-making because their program cares for traditionally underserved populations, especially children, pregnant women and people with mental illness. Because these patient populations have generally been underrepresented in research discussions, CER questions for these groups may be understudied. To address this problem, the Agency for Healthcare Research and Quality commissioned our team to work with Medicaid Medical Directors and other stakeholders to identify relevant CER questions. Through an iterative process of topic identification and refinement, we developed relevant, feasible and actionable questions based on issues affecting Medicaid programs nationwide. We describe challenges and limitations and provide recommendations for future stakeholder engagement.
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Project description:IntroductionThe Global Vaccine Action Plan (GVAP), unanimously endorsed by the World Health Assembly in 2012, defined an ambitious strategy to improve immunization. At the end of the decade, significant progress has been made but four of the five GVAP goals are likely to be missed. This report describes a set of surveys and interviews relating to GVAP, conducted to inform the immunization strategy for the next decade.MethodsThree surveys and two sets of semi-structured interviews were conducted from 2017 to 2019. Respondents consisted of immunization stakeholders at global, regional, and country levels, and included individuals who had been involved in the development and implementation of GVAP or its monitoring, evaluation and accountability (M&E/A) process; national immunization managers; academics; and personnel from non-governmental organizations and civil society organizations.ResultsThe surveys and interviews gave consistent results. They highlighted the value of GVAP in increasing visibility for immunization and the benefits of the GVAP M&E/A framework. The main limitations of GVAP were identified as the limited ownership by countries and other stakeholders leading to incomplete implementation of the strategy and poor accountability for achieving GVAP targets.DiscussionThese results informed the review of GVAP and the development of its successor strategy, the Immunization Agenda 2030. In addition, these surveys and interviews identified two challenges in assessing the value of GVAP: the need to rely exclusively on stakeholder perspectives and difficulties in attributing benefits. These challenges are inherent in evaluating an over-arching strategy such as GVAP and should be factored into interpretation of the results.
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Project description:BackgroundTackling falsified and substandard medicines requires intersectoral collaboration, impact-oriented research and the effective application of research findings. However, the best way to organize research and involve stakeholders from different sectors to ensure that results are used, remains unclear. We aimed to assess how intersectoral stakeholder engagement in research on medicine quality in Indonesia evolved, influenced the research processes and participants, and affected the uptake of the results.MethodsFor this prospective case study, we adopted an abductive approach inspired by contribution mapping and collaborative governance. We conducted 37 interviews with key informants, observed 24 meetings and analysed 121 documents to systematically map the engagement of stakeholders in a study on medicine quality, focusing on processes, influences and research-related contributions.ResultsFrom the outset, it proved feasible, but challenging, to effectively engage stakeholders in research into falsified and substandard medicines in Indonesia. After a cautious start and persistent efforts, stakeholders, such as the national medicine regulatory authority, became increasingly involved and developed a shared understanding of the need for intersectoral collaboration to tackle problems with medicine quality. While the research findings did not lead to a different estimate of the magnitude of the problem, the involvement of stakeholders was beneficial. After formalizing the collaboration, stakeholders provided data needed to study potential risk factors, product varieties and sales volumes, and contributed to decisions during the research and interpretation of the findings. Owing to frequent personnel changes and diverging priorities, stakeholder engagement required more effort than anticipated, and necessitated a strategic and adaptive approach. This approach had to account for the varying priorities and interests of stakeholders, the evolving framing of the problem, the implications of the findings and the nature of the field, where regulators must operate cautiously, balance interests and respond to critical incidents.ConclusionsIntersectoral stakeholder engagement in medicine quality research is challenging but beneficial. Engagement contributed to building trust and relationships between researchers and stakeholders, helped forge an intersectoral network focused on medicine quality, exposed the medicine regulator to new methods, inspired stakeholders to take on new roles and make better use of existing data and furthered a research-policy partnership forum on pharmaceutical topics.
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