Enhancing community engagement in Patient-Centered Outcomes Research: Equipping learners to thrive in translational efforts.
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ABSTRACT:
SUBMITTER: Poger JM
PROVIDER: S-EPMC8532187 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
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Enhancing community engagement in Patient-Centered Outcomes Research: Equipping learners to thrive in translational efforts.
Poger Jennifer M JM Murray Andrea E AE Schoettler Emily A EA Marin Evelyn S ES Aumiller Betsy B BB Kraschnewski Jennifer L JL
Journal of clinical and translational science 20210813 1
Community engagement is a critical component of translational research. Innovative educational approaches to support meaningful involvement of stakeholders in clinical research allows for bidirectional learning and greater engagement in translational efforts. Our Penn State Community-Engaged Research Core (CeRC) team has developed an innovative research curriculum for a variety of stakeholders, including patient partners, organizational representatives, and Community Health Workers (CHWs). This ...[more]
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Project description:BACKGROUND:Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods. OBJECTIVES:We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer. METHODS:In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project's participatory approach and identify barriers to participation. Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project. CONCLUSIONS:Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers' capacity to engage meaningfully with stakeholders.
| S-EPMC5679445 | biostudies-literature
Project description:BackgroundThe institutions that comprise the Clinical and Translational Science Award (CTSA) consortium and the National Center for Advancing Translational Sciences continue to explore and develop community-engaged research strategies and to study the role of community academic partnerships in advancing the science of community engagement.ObjectivesTo explore CTSA institutions in relation to an Institute of Medicine recommendation that community engagement occur in all stages of translational research and be defined and evaluated consistently.MethodsA sequential multimethods study starting with an online pilot survey followed by survey respondents and site informant interviews. A revised survey was sent to the community engagement and evaluation leads at each CTSA institution, requesting a single institutional response about the definitions, indicators, and metrics of community engagement and community-engaged research.ResultsA plurality of CTSA institutions selected the definition of community engagement from the Principles of Community Engagement. Although claiming unique institutional priorities create barriers to developing shared metrics, responses indicate an overall lack of attention to the development and deployment of metrics to assess community engagement in and contributions to research.ConclusionsAlthough definitions of community engagement differ among CTSAs, there seem to be more similarities than differences in the indicators and measures tracked and reported on across all definitions, perhaps owing to commonalities among program infrastructures and goals. Metrics will likely need to be specific to translational research stages. The assessment of community engagement within translational science will require increased institutional commitment.
| S-EPMC6237095 | biostudies-literature
Project description:ProblemA goal of the Southern California Clinical and Translational Science Institute (SC-CTSI) at the University of Southern California and Children's Hospital Los Angeles is to train early-stage clinical and translational scientists (CTSs) to conduct research that improves the health of diverse communities. This goal aligns well with the Institute of Medicine's recommendations emphasizing community engagement in biomedical research that facilitates research translation. The Community Mentorship Program (CMP), created to complement community-engaged research didactics, matches CTSs with community mentors who help them identify and complete community-engaged experiences that inform their research.ApproachThe CMP was piloted in 2013-2015 by the SC-CTSI Workforce Development and Community Engagement cores. The CMP team matched three CTSs (assistant professors pursuing mentored career development awards) with mentors at community-based organizations (CBOs) aligned with their research interests. Each mentor-mentee pair signed a memorandum of understanding. The CMP team checked in regularly, monitoring progress and addressing challenges in CTSs' completion of their community-engaged experience.OutcomesEach pair completed at least one community-engaged activity informing the CTS's research. In exit interviews, the CTSs and CBO mentors expressed satisfaction with the program and stated that they would continue to work together. The CTSs reported that the program provided opportunities to develop networks outside academia, build trust within the community, and receive feedback and learn from individuals in communities affected by their research.Next stepsThe CMP will be expanded to include all eligible early-career CTSs and promoted for use in similar settings outside the SC-CTSI.
| S-EPMC5263105 | biostudies-literature
Project description:IntroductionStakeholder engagement can play an important role in increasing public trust and the understanding of scientific research and its impact. Frameworks for stakeholder identification exist, but these frameworks may not apply well to basic science and early stage translational research.MethodsFour Clinical and Translational Science Award (CTSA) hubs led six focus groups and two semi-structured interviews using a semi-structured discussion guide to learn from basic science researchers about stakeholder engagement in their work. The 24 participants represented fourteen clinical and academic disciplines.ResultsEarly stage translational researchers reported engagement with a broad array of stakeholders. Those whose research has a clinical focus reported working with a more diverse range of stakeholders than those whose work did not. Common barriers to stakeholder engagement were grouped into three major themes: a poor definition of concepts, absence of guidance, and limited resources.DiscussionThe National Center for Advancing Translational Sciences (NCATS), the consortium of CTSAs, and the individual CTSA "hubs" are three actors that can help early stage translational researchers develop shared terms of reference, build the necessary skills, and assemble the appropriate resources for engaging stakeholders in Clinical and Translational Research. Getting this right will involve a coordinated push by all three entities.
| S-EPMC7332000 | biostudies-literature
Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.
| S-EPMC6143220 | biostudies-literature
Project description:BackgroundLimited information is available about the representativeness of survivors engaging in patient-centered research, despite the potential for threats to generalizability. We thus aimed to assess the representativeness of survivors engaged or interested in research development.MethodsWe used data from the Health Information National Trends Survey, a nationally representative survey, to identify survivors of adult cancers. Our outcomes of interest were based on responses to questions about engagement or interest in developing patient-centered research. We estimated the ratio of relative frequencies (RRF) and corresponding 95% confidence limits (CL) of sociodemographic and survivorship characteristics between survivors engaged or interested in patient-centered research and the overall survivor population.ResultsOur study population comprised 934 survivors, of whom 5% reported being engaged in patient-centered research and 26% reported an interest in participating. Relative frequencies of characteristics were discordant for engaged survivors but largely similar for interested survivors compared with all survivors. In particular, engaged survivors had a higher relative frequency of individuals ages 50 to 64 years (RRF = 1.7; 95% CL, 1.1-2.5), Hispanic (RRF = 2.9; 95% CL, 1.2-6.9), non-Hispanic Black (RRF = 2.9; 95% CL, 1.1-2.5), and unemployment (RRF = 4.7; 95% CL, 1.4-16).ConclusionsWe observed several meaningful differences in the characteristics of survivors engaged in patient-centered research compared with all survivors, which raises concerns about the generalizability of findings from such studies.ImpactPatient-centered research may not benefit the broader survivor community if survivors engaging in research development are not representative of all survivors. Greater attention to recruiting mechanisms is necessary to avoid creating disparities.
| S-EPMC7007350 | biostudies-literature
Project description:IntroductionHuman-centered design (HCD) training offers the potential to improve both team processes and products. However, the use of HCD to improve the quality of team science is a relatively recent application, and its benefits and challenges have not been rigorously evaluated. We conducted a qualitative study with health sciences researchers trained in HCD methods. We aimed to determine how researchers applied HCD methods and perceived the benefits and barriers to using HCD on research teams.MethodsWe conducted 1-hour, semi-structured interviews with trainees from three training cohorts. Interviews focused on perceptions of the training, subsequent uses of HCD, barriers and facilitators, and perceptions of the utility of HCD to science teams. Data analysis was conducted using Braun and Clarke's process for thematic analysis.ResultsWe interviewed nine faculty and nine staff trained in HCD methods and identified four themes encompassing HCD use, benefits, challenges, and tensions between HCD approaches and academic culture.ConclusionsTrainees found HCD relevant to research teams for stakeholder engagement, research design, project planning, meeting facilitation, and team management. They also described benefits of HCD in five distinct areas: creativity, egalitarianism, structure, efficiency, and visibility. Our data suggest that HCD has the potential to help researchers work more inclusively and collaboratively on interdisciplinary teams and generate more innovative and impactful science. The application of HCD methods is not without challenges; however, we believe these challenges can be overcome with institutional investment.
| S-EPMC8327548 | biostudies-literature
Project description:BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users.MethodsIn practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods.ResultsThis paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations.ConclusionECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.
| S-EPMC5379503 | biostudies-literature
Project description:BackgroundIn 2010, the Patient Centered Outcomes Research Institute (PCORI) was created to fund patient-centered research that meaningfully engages stakeholders impacted by that research. As a result, investigators became interested in understanding who are appropriate stakeholders and what meaningful engagement in research looks like (6, 8-10).ObjectiveTo understand how and when stakeholder engagement worked well and identify areas for enhancing engagement in a PCORI-funded research study of peer-to-peer support of older adults in three communities across the USA.DesignQualitative interview study.ParticipantsTwelve members of the inter-disciplinary research team.ApproachInterviews were conducted via phone, recorded, and transcribed. Transcripts were analyzed using a constant comparative method to identify themes. Transcripts were independently coded; coded themes were discussed by a small group of the research team to check interpretation and clarify meaning. Once initial themes were identified, the interviews and codes were shared with an external consultant who recoded all 12 transcripts and conducted further analysis and interpretation. Documentation from research meetings was used to validate our findings.Key resultsStrategies for facilitating meaningful engagement in the partnership, proposal, study design, and planning phase were very similar to community-based participatory research and include the use of community to identify research needs, equitable compensation and leadership, and budgeting for engagement activities. Strategies in the data collection phase include the use of cultural brokers, weekly data calls between the academic PI and imbedded research assistants, and maintaining joint ownership for research.ConclusionsMajor funding institutions (e.g., NIH, PCORI) recognize that community engagement leads to higher quality, more meaningful research (7, 21). Our results support that assumption and in addition, suggest an investment in engagement strategies at the onset of a research project and the use of cultural brokers can greatly contribute to the success of implementing a large, multi-site research project.
| S-EPMC6318189 | biostudies-literature
Project description:BackgroundCommunity engagement is essential for effective research when addressing issues important to both the community and researchers. Despite its effectiveness, there is limited published evidence concerning the evaluation of community engagement in research projects, especially in the area of nephrology.MethodsWe developed a community engagement program in Guatemala to address the role of hydration in chronic kidney disease of unknown origin, using five key engagement principles: 1. Local relevance and determinants of health. 2. Acknowledgment of the community. 3. Dissemination of findings and knowledge gained to all partners. 4. Usage of community partners' input. 5. Involvement of a cyclical and iterative process in the pursuit of goals. The effectiveness of community engagement was measured by a structured questionnaire on a 5-point likert scale. This measure determined how well and how often the research team adhered to the five engagement principles. We assessed internal consistency for each set of the engagement items through Omega coefficient.ResultsSixty-two community leaders completed the questionnaire. Seventy-five percent were female, with a mean age of 37 years. All 5 engagement principles scored highly on the 5-point likert scale. Every item set corresponding to an engagement principles evaluation had a Omega coefficient > 0.80, indicating a firm internal consistency for all question groups on both qualitative and quantitative scales.ConclusionEngagement of the community in the kidney research provides sustainability of the efforts and facilitates the achievements of the goals. Community leaders and researchers became a team and develop a relationship in which commitment and empowerment facilitated the participation in all aspects of the research process. This initiative could be a useful tool for researchers, especially in low-middle income countries, to start research in a community, achieve objectives in a viable form, and open opportunities to further studies.
| S-EPMC9373416 | biostudies-literature