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Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement

ABSTRACT: Background There is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders as research partners in study planning, conduct, and dissemination. This requirement, unique among large healthcare research funders in the US, provides an opportunity to learn about challenges encountered and specific strategies used by PCORI-funded study teams. The primary objective of this study is to describe -- from the perspective of PCORI investigators and research partners—the most common engagement challenges encountered in the first two years of the projects and promising strategies to prevent and overcome these challenges. Methods Descriptive information about investigators, partners, and their engagement was collected from investigators via annual (N =?235) and mid-year (N =?40) project progress reporting to PCORI, and from their partners (N =?260) via voluntary survey. Qualitative data were analyzed using content and thematic analyses. Results Investigators and partners most often described engagement challenges in three domains: (1) infrastructure to support engagement, (2) building relationships, and (3) maintaining relationships. Infrastructure challenges related to financial and human resources, including funding support and dedicated staff, identifying diverse groups of partners, and partners’ logistical needs. Challenges for both building and maintaining relationships encompass a variety of aspects of authentic, positive interactions that facilitate mutual understanding, full participation, and genuine influence on the projects. Strategies to prevent or mitigate engagement challenges also corresponded overall to the same three domains. Both groups typically described strategies more generally, with applicability to a range of challenges rather than specific actions to address only particular challenges. Conclusion Meaningful engagement of patients and other stakeholders comes with challenges, as does any innovation in the research process. The challenges and promising practices identified by these investigators and partners, related to engagement infrastructure and the building and maintenance of relationships, reveal actionable areas to improve engagement, including organizational policies and resources, training, new engagement models, and supporting engagement by viewing it as an investment in research uptake and impact.

SUBMITTER: Heckert A

PROVIDER: S-EPMC7539495 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:With the increase in patient and consumer activism through the late twentieth century and into this century, patient roles in research evolved into a new model of research engagement, with patients serving as active advisors and co-leading or leading clinical research. By requiring active engagement of patients and other stakeholders, several government research funders have advanced this model, particularly in Canada, the United States (US), United Kingdom (UK), and Australia. A consortium of individuals from these countries formed a Multi-Stakeholder Engagement (MuSE) consortium to examine critical issues in engaged research, establish consensus on definitions, and provide guidance for the field, beginning with an overview of how to involve stakeholders in health research (Concannon et al. J Gen Intern Med. 2019;34(3):458-463) and continuing here with an examination of definitions of research engagement. The political and advocacy roots of engaged research are reflected in definitions. Engagement is conceptualized with reference to research project goals, from informing specific clinical decisions to informing health-system level decisions. Political and cultural differences across countries are evident. Some of these government funders focus on empirical rather than ethical rationales. In countries with centralized health technology assessment, the link between societal values and engaged research is explicit. Ethical rationales for engagement are explicit in most of the published literature on research engagement. Harmonization of definitions is recommended so that research engagement elements, methods, and outcomes and impacts can be clearly examined and understood, and so that the field of research engagement can proceed from a clear conceptual foundation. Specific recommendations for terminology definitions are provided. Placing engaged research on a continuum from specific clinical decisions to more global public and social justice concerns clarifies the type of engaged research, supports appropriate comparisons, and improves the rigor of engaged research methods. The results help identify knowledge gaps in this growing field.

Project description:BACKGROUND:Hypertension, itself a cardiovascular condition, is a significant risk factor for other cardiovascular diseases. Hypertension is recognized as a major public health challenge in Ghana. Beginning in 2014, a collaborative team launched the community-based hypertension improvement program (ComHIP) in one health district in Ghana. The ComHIP project, a public-private partnership, tests a community-based model that engages the private sector and utilizes information and communication technology (ICT) to control hypertension. This paper, focuses on the various challenges associated with managing hypertension in Ghana, as reported by ComHIP stakeholders. METHODS:A total of 55 informants - comprising patients, health care professionals, licensed chemical sellers (LCS), national and sub-national policymakers - were purposively selected for interview and focus group discussions (FGDs). Interviews were audio-recorded and transcribed verbatim. Where applicable, transcriptions were translated directly from local language to English. The data were then analysed using two-step thematic analysis. The protocol was approved by the two ethics review committees based in Ghana and the third, based in the United Kingdom. All participants were interviewed after giving informed consent. RESULTS:Our data have implications for the on-going implementation of ComHIP, especially the importance of policy maker buy-in, and the benefits, as well as drawbacks, of the program to different stakeholders. While our data show that the ComHIP initiative is acceptable to patients and healthcare providers - increasing providers' knowledge on hypertension and patients' awareness of same- there were implementation challenges identified by both patients and providers. Policy level challenges relate to task-sharing bottlenecks, which precluded nurses from prescribing or dispensing antihypertensives, and LCS from stocking same. Medication adherence and the phenomenon of medical pluralism in Ghana were identified challenges. The perspectives from the national level stakeholders enable elucidation of whole of health system challenges to ComHIP and similarly designed programmes. CONCLUSIONS:This paper sheds important light on the patient/individual, and system level challenges to hypertension and related non-communicable disease prevention and treatment in Ghana. The data show that although the ComHIP initiative is acceptable to patients and healthcare providers, policy level task-sharing bottlenecks preclude optimal implementation of ComHIP.

Project description:BackgroundThe emergence of high-priced potential cures has sparked significant health policy discussions in South Korea, where the healthcare system is funded through a single-payer National Health Insurance model. We conducted focus group interviews (FGIs) and accompanying surveys with diverse stakeholders to comprehensively understand related issues and find better solutions to the challenges brought by these technologies.MethodsFrom October to November 2022, 11 FGIs were conducted with stakeholders from various sectors, including government payers, policy and clinical experts, civic and patient organisations, and the pharmaceutical industry, involving a total of 25 participants. These qualitative discussions were supplemented by online surveys to effectively capture and synthesise stakeholder perspectives.ResultsAffordability was identified as a critical concern by 84% of stakeholders, followed by clinical uncertainty (76%) and limited value for money (72%). Stakeholders expressed a preference for both financial-based controls and outcome-based pricing strategies to mitigate these challenges. Despite the support for outcome-based refunds, payers raised concerns about the feasibility of instalment payment models, whether linked to outcomes or not, due to the specific challenges of the Korean reimbursement system and the potential risk of 'cumulative liabilities' from ongoing payments for previously administered treatments. In addition, the FGIs highlighted the need for clear budgetary limits for drugs with high uncertainties, with mixed opinions on the creation of special silo funds (64.0% agreement). Less than half (48%) endorsed the use of external reference pricing, currently applied to such essential drugs in South Korea. A significant majority (84%), predominantly non-pharma stakeholders, advocated for addressing cost-effectiveness uncertainty through re-assessment once long-term clinical data become available.ConclusionsThis study uncovers a broad agreement among stakeholders on the need for more effective value assessment methodologies for high-priced potential cures, stressing the importance of more robust and comprehensive re-assessment supported by long-term data collection, rather than primarily relying on external reference pricing. Each type of stakeholders exhibited a cautious approach to their specific uncertainties, suggesting that new funding strategies should accommodate these uncertainties with predefined guidelines and agreements prior to the initiation of managed entry agreements.

Project description:BackgroundGenerally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR.AimTo assess the perspectives of genetics and genomics researchers in Uganda on CE in GGR.MethodA cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus.Study findingsThirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR.ConclusionGGR was characterized by special issues that require special CE considerations for such research.

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Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement

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