As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion ...of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.
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Context: This is the last in a four-part series that describes the outcome of a mixed-methods participatory social justice (MMPSJ) research project. A community engagement model was designed by ...participants as a synthesis of working with urban Indigenous peoples living on Treaty Six Territory and traditional homeland of the Metis in Saskatchewan, Canada. It responds to the Truth and Reconciliation Commissions calls to Action 10, 18-20. Community-based participatory health research (CBPHR) often sees the community as a place to undertake research in; this research saw the community as providing the leadership for the research. Objective: To show how MMPSJ work can help to shift from community-based to community-led research. Design: Mixed-methods participatory social justice and community-based participatory health research. Participants: Twelve Indigenous people representing four intergenerational families were invited to two Talking Circles to respond to questions derived from the Aboriginal Regional Health Surveys; as well as answer the following questions: What are the current connections between literacy and health within urban Indigenous families? What literacy issues continue to marginalize the community? How would you like this knowledge disseminated? This research was reviewed and approved by the University of Saskatchewan's Behavioural REB. Results/Findings: Knowledge of Treaty Six teachings was increased; participants described the social justice/transformative nature of this work an opportunity to be seen well and whole; and the Community Engagement Model evolved within the MMPSJ design. Conclusions: Community-based research can be transformed to being community-led through careful consideration of power and authentically engaging with the community at each step in the process.
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Background
There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care ...research.
Objective
To identify the impact of patient and public involvement on health and social care research.
Design
A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.
Inclusion criteria
All study types that reported the impact PPI had on the health and/or social care research study.
Main results
A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.
Conclusion
This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.
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PROBLEMEngaging communities in research increases its relevance and may speed the translation of discoveries into improved health outcomes. Many researchers lack training to effectively engage ...stakeholders, whereas academic institutions lack infrastructure to support community engagement.
APPROACHIn 2009, the Meharry-Vanderbilt Community-Engaged Research Core began testing new approaches for community engagement, which led to the development of the Community Engagement Studio (CE Studio). This structured program facilitates project-specific input from community and patient stakeholders to enhance research design, implementation, and dissemination. Developers used a team approach to recruit and train stakeholders, prepare researchers to engage with stakeholders, and facilitate an in-person meeting with both.
OUTCOMESThe research core has implemented 28 CE Studios that engaged 152 community stakeholders. Participating researchers, representing a broad range of faculty ranks and disciplines, reported that input from stakeholders was valuable and that the CE Studio helped determine project feasibility and enhanced research design and implementation. Stakeholders found the CE Studio to be an acceptable method of engagement and reported a better understanding of research in general. A tool kit was developed to replicate this model and to disseminate this approach.
NEXT STEPSThe research core will collect data to better understand the impact of CE Studios on research proposal submissions, funding, research outcomes, patient and stakeholder engagement in projects, and dissemination of results. They will also collect data to determine whether CE Studios increase patient-centered approaches in research and whether stakeholders who participate have more trust and willingness to participate in research.
Effective community-partnered and patient-centered outcomes research needs to address community priorities. However, optimal sampling methods to engage stakeholders from hard-to-reach, vulnerable ...communities to generate research priorities have not been identified.
In two similar rural, largely Hispanic communities, a community advisory board guided recruitment of stakeholders affected by chronic pain using a different method in each community: 1) snowball sampling, a chain- referral method or 2) purposive sampling to recruit diverse stakeholders. In both communities, three groups of stakeholders attended a series of three facilitated meetings to orient, brainstorm, and prioritize ideas (9 meetings/community). Using mixed methods analysis, we compared stakeholder recruitment and retention as well as priorities from both communities' stakeholders on mean ratings of their ideas based on importance and feasibility for implementation in their community.
Of 65 eligible stakeholders in one community recruited by snowball sampling, 55 (85 %) consented, 52 (95 %) attended the first meeting, and 36 (65 %) attended all 3 meetings. In the second community, the purposive sampling method was supplemented by convenience sampling to increase recruitment. Of 69 stakeholders recruited by this combined strategy, 62 (90 %) consented, 36 (58 %) attended the first meeting, and 26 (42 %) attended all 3 meetings. Snowball sampling recruited more Hispanics and disabled persons (all P < 0.05). Despite differing recruitment strategies, stakeholders from the two communities identified largely similar ideas for research, focusing on non-pharmacologic interventions for management of chronic pain. Ratings on importance and feasibility for community implementation differed only on the importance of massage services (P = 0.045) which was higher for the purposive/convenience sampling group and for city improvements/transportation services (P = 0.004) which was higher for the snowball sampling group.
In each of the two similar hard-to-reach communities, a community advisory board partnered with researchers to implement a different sampling method to recruit stakeholders. The snowball sampling method achieved greater participation with more Hispanics but also more individuals with disabilities than a purposive-convenience sampling method. However, priorities for research on chronic pain from both stakeholder groups were similar. Although utilizing a snowball sampling method appears to be superior, further research is needed on implementation costs and resources.
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Community-based participatory research (CBPR) is defined by the Kellogg Community Health Scholars Program as a collaborative process that equitably involves all partners in the research process and ...recognizes the unique strengths that each community member brings. The CBPR process begins with a research topic of importance to the community, with the goal of combining knowledge and action with social change to improve community health and eliminate health disparities. CBPR engages and empowers affected communities to collaborate in defining the research question; sharing the study design process; collecting, analyzing, and disseminating the data; and implementing solutions. A CBPR approach in radiology has several potential applications, including removing limitations to high-quality imaging, improving secondary prevention, identifying barriers to technology access, and increasing diversity in the research participation for clinical trials. The authors provide an overview with the definitions of CBPR, explain how to conduct CBPR, and illustrate its applications in radiology. Finally, the challenges of CBPR and useful resources are discussed in detail.
RSNA, 2023 Quiz questions for this article are available in the supplemental material.
Tokenism in patient engagement Hahn, David L; Hoffmann, Amanda E; Felzien, Maret ...
Family practice,
06/2017, Volume:
34, Issue:
3
Journal Article
Peer reviewed
Open access
Patient engagement throughout research is a way to generate more relevant patient-important research questions, methods and results with the ultimate aim of facilitating translation of research into ...practice. Tokenism is defined as the practice of making perfunctory or symbolic efforts to engage communities or patients.
We wanted to explore how tokenism might influence engaging patients in research to help researchers work towards more genuine engagement.
The Community Clinician Advisory Group and Patient and Clinician Engagement program held a workshop at the 2015 North American Primary Care Research Group meeting titled 'How Do We Move beyond Tokenism in Patient Engagement?' Patients, clinicians and academic researchers contributed examples of genuine and token engagement characteristics based on personal experience and knowledge. Data were iteratively collated and categorized into domains and items.
Examples of genuine and token engagement were categorized into three domains: Methods/Structure of engagement, Intent and Relationship building. Members with experience in patient-engaged research projects felt that longitudinal engagement was a key element to effectively translating research into local community and practice.
The group (i) highly valued genuine intent and relationship building as elements to combat tokenism; (ii) noted that early genuine attempts at engagement may superficially resemble tokenism as researchers build enduring and trusting relationships with patient/community partners and (iii) emphasized the importance of seeking and utilizing patient experiences throughout research. These observations may contribute to more formal methods to help researchers (and reviewers) evaluate where engagement processes sit along the 'genuine-token' continuum.
The existing gap between thinkers and doers is one of the main reasons behind the failure of the modern research system in the field of management, as many scholars suggest. Participatory, action ...research and experience-based methods are now attracting scholars as well as institutions who actively participate in improving the efficacy of policy-making. This study presents the work conducted by the JRC-IPTS of the European Commission in the Greek region of Eastern Macedonia and Thrace for supporting the implementation of the region's Smart Specialisation Strategy (S3). The study presents the methodology based on participatory and experience-based methods and offers reflections on how to reduce the thinkers–doers gap.
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An implementation and effectiveness evaluation of the Community Scholars Program was conducted at the University of Pennsylvania to enhance community capacity to collaborate with academics in ...mutually beneficial, equitable, and transformative research. Mixed methods were employed using administrative data, surveys, and key informant interviews. Participants expressed high satisfaction, valued interactive learning, and identified areas for improvement. The program increased knowledge and self-confidence in research-related skills and trust in the research process. The program serves as an institutional model to create long-term, mutually beneficial community-academic partnerships. (
2024;114(3):284-288. https://doi.org/10.2105/AJPH.2023.307549).
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There are increasing imperatives for patients and members of the public to engage as partners in identifying health research priorities. The use of participatory methods to engage stakeholders in ...health care in research prioritization is not commonly reported.
This article analyses the use of World Cafés as a participatory method for research prioritization with marginalized communities in Ireland and the USA.
The principles of purposeful and snowball sampling were followed in both settings and a diverse range of community and health care stakeholders participated (n = 63 Ireland and n = 55 USA). The principles for a classic World Café were employed but there were novel features in each setting as well. Stewart et al.'s (Patients' and clinicians' research priorities. Health Expect 2011; 14: 439-48, conceptual framework for patient engagement was adapted and used to comparatively analyse the strengths and weaknesses of the World Cafés, focusing on agenda setting, engagement with research processes, interactional features and outputs.
Design principles for World Cafés were found to align with high-quality patient engagement for research prioritization in both settings. They served to facilitate meaningful collaboration among stakeholder groups in research prioritization (research agenda setting) and explored research priorities (engagement with research). The café ambience, emphasis on hospitality and self-facilitation created an environment for dialogues within and across participating groups (interactional features). There was a commitment to follow-up actions with reference to possible subsequent research (outputs).
The World Café is a valuable, participatory, flexible method that can be used with community and health care stakeholders for research prioritization with marginalized communities.
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