The Patient Advisor Program at Henry Ford Health is an innovative initiative aimed at strengthening patient engagement in research, quality improvement, and clinical care. Patient engagement yields increased relevance of studied topics and builds trust within communities. As such, it is vital to evaluate the quality of patient engagement across research programs. The purpose of this study was to evaluate the quality of engagement for patient advisors (PA) enrolled within the Patient Advisor Program. A cross-sectional survey, sent via REDCap to 578 active and inactive PAs, utilized the Public and Patient Engagement Evaluation Tool-Patient (PPEET) consisting of 19-items, closed- (n = 13) and open-ended (n = 6) items across the core principles of quality engagement: (1) Communication and supports for participation (3 items), (2) Sharing your views and perspectives (4 items), (3) Impacts and influence of the engagement initiative (4 items), and (4) Final thoughts (n = 3). All closed-ended questions were answered on a 5-point Likert scale with anchors from strongly disagree to strongly agree and analyzed using descriptive statistics. Open-ended questions were analyzed using a 3-step qualitative content analysis. The final dataset of those who completed the PPEET survey included 199 PAs with a mean age of 60.7 years (SD = 15.6). PAs were primarily women (75.6
People with lived/living experience of mental health or substance use health conditions and their family/caregivers are increasingly engaged in research about their conditions and needs. Ensuring that those engaged are diverse is important for appropriate representation. However, the current degree of diversity is unclear. This scoping review synthesizes demographic information in the meta-research on lived/living experience and family engagement in mental health and substance use health research to understand diversity. To be included, papers had to report on meta-research on lived/living experience or family engagement in mental health or substance use health research and provide at least two demographic data points for participants. Papers had to be in English or French and published in the last ten years. We searched PsycInfo, MEDLINE, Cumulative Index to Nursing Allied Health Literature (CINAHL), and Web of Science databases and identified 6,342 unique records. Titles and abstracts were screened by two reviewers, followed by full text screening by two reviewers. We included 17 articles. Data were extracted in a spreadsheet, then synthesized narratively and in tables. People with lived/living experience were engaged in the review. The 17 articles emerged from predominantly White, English-speaking countries. As a whole, there is moderate diversity in the meta-research on engagement, across age, ethnic/cultural background, and education. Rates of missing data were high. There are gaps regarding older adults, children, men/males, and transgender/non-binary individuals. Metrics like primary language, employment status, spirituality, sexual orientation, immigration, and family income were rarely reported. Few papers included family members, and their specific demographics were not provided. There appears to be a moderate degree of diversity in the mental health and substance use health engagement meta-research, although many meta-research papers do not report on demographic characteristics. Researchers are called on to keep diversity in mind when recruiting people with lived/living experience and family members, avoiding tokenistic engagement to ensuring that the evidence is informed by diverse and representative voices. Researchers are further called on to report on demographics in meta-research on engagement, to understand the degree of diversity underlying the science of engagement. People with lived and living experience of a mental health or substance use health condition and their family/caregivers are increasingly engaged in research about their conditions and needs. It is important that a diverse range of voices be heard. We therefore reviewed the studies on lived/living experience and family engagement in mental health and substance use health research, to understand diversity. People with lived and living experience were engaged in the review. We searched four scientific databases and found 17 articles that provided demographic data on the advisors and co-researchers participating in studies. The 17 articles were from predominantly White, English-speaking countries. They showed that there is moderate diversity in the research on engagement, across age, ethnic/cultural background, and education. However, many articles did not report on demographics. There is a gap in the engagement of older adults, children, men and transgender/non-binary individuals. Few articles reported on aspects of diversity like primary language, employment status, spirituality, sexual orientation, immigration status, and/or family income. Few papers included family members, and their demographics are not reported separately. We call on researchers to keep diversity in mind when recruiting lived/living experience and family advisors and co-researchers, to ensure that the evidence is informed by diverse voices, but to avoid tokenism in doing so. We also call on them to report on demographics in their manuscripts on studies about engagement, so that we can understand who is being engaged and whose voices may still be missing from the research, while respecting lived/living experience and family preferences.
Abstract Background Community engagement is increasingly recognised as an essential element of health research in underserved settings, yet limited evidence describes how engagement strategies are designed, adapted, and implemented during large-scale intervention trials. This implementation case study describes the development, implementation, and iterative adaptation of a stakeholder and community engagement strategy embedded within a field trial of mass vaccination and drug administration (MVDA) for malaria elimination in Bangladesh. Methods The cluster-randomised, open-label trial was conducted across 100 villages (~12,000 people) in the Chittagong Hill Tracts, Bangladesh. The paper draws on implementation records, field observations, meeting reports, and structured team reflections generated during programme delivery to describe the engagement process, key adaptations, implementation challenges, and lessons learned. Results Early stakeholder engagement informed a context-specific engagement strategy that emphasised collaboration with village leaders, culturally tailored communication, responsiveness to community concerns, and integration of basic healthcare support. Throughout implementation, engagement activities were iteratively adapted in response to community feedback, rumours, seasonal livelihood demands, and local cultural and religious beliefs. These iterative approaches were followed by continued engagement across remote and culturally diverse communities, although persistent challenges included geographical isolation, social and political factors, complex trial messaging, competing livelihood priorities, and concerns regarding vaccination, including fears about fertility. Conclusions Community engagement functioned as an adaptive and responsive process rather than a fixed intervention. These experiences provide transferable lessons for designing stakeholder and community involvement strategies for complex health research conducted in underserved and culturally diverse settings.
Patient and Public Involvement and Engagement (PPIE) is essential to high-quality cancer research, ensuring that studies reflect patient and public priorities and lived experience. In summer 2025, the Cancer Research UK (CRUK) and UCL Cancer Trials Centre (CTC) hosted a Patient Engagement Day, building on a similar event held in 2023. The aims were to educate PPIE representatives about opportunities for involvement in cancer clinical trials and to expand the pool of patient partners contributing to CTC research. The event was co-designed with PPIE representatives and the programme included presentations, patient-led talks, panel discussions, case studies, workshops and networking. Content was shaped by feedback from the 2023 event and consultation with current PPIE partners. Invitations were widely distributed through research, charity and community networks to encourage attendance from both new and experienced PPIE representatives. Three parallel workshops focused on training and support needs for PPIE partners, inclusive recruitment of patients to clinical trials, and communication with trial participants. Ninety-nine PPIE representatives and healthcare professionals registered for the event and 78 attended, including 53 PPIE representatives, representing an increase in patient participation compared with 2023. Attendees reflected a broad range of PPIE experience, from novice (limited experience of PPIE activities in research, self-evaluated) to expert (involved in PPIE activities for more than 5 years, self-evaluated), supporting peer learning and networking. Post-event feedback was completed by 46 attendees (59
Public and Patient Engagement (PPE) in health research has become an established practice and is increasingly now an imperative for publicly funded health research grants. Graduate students represent the next generation of health researchers; therefore, it is essential they gain PPE knowledge and skills within academic landscapes that promote collaborative research with those whom research is intended to benefit. By securing theoretical knowledge and practical experience early in their research careers, effective PPE can become well-established in all academic, health research and healthcare domains. However, many academic institutions struggle with implementing the necessary systemic and cultural change to moving the science and practice of PPE forward within their institutions. Nine students enrolled in a graduate level PPE course at the University of Calgary, Alberta, Canada engaged in an end-of-term reflexive class exercise that centred on the question “What would make patient engagement more possible for graduate students during their graduate degrees?” As a result of iterative review and discussion of the responses, four key themes were identified: (i) embed PPE elements into health research graduate program structure, (ii) offer opportunities to support hands-on learning and practice of PPE, (iii) integrate public, patient, and community members into graduate program design and delivery, and (iv) emphasize ethical community-based research considerations and researcher reflexivity. For health science graduate students to inclusively integrate PPE theory and principles into their research work, it is important that the academic institutions they are enrolled in keep pace with current research imperatives, and ethical and funding practices. This means regularly assessing and evaluating ways their institutional systems, processes, and programs are responding and evolving. In this reflective commentary we offer our considerations, and suggested guidance on best practices to continue to ‘move the needle’ on embedding PPE culture and practice in academic institutions in Canada and globally. We hope to initiate response and further discourse from other graduate students and from patient partners who have shared their lived experience insights to graduate student research studies, and mentorship and governance roles in health science graduate level curriculum and program planning. It is important to include people whom health research is supposed to benefit in deciding what should be researched and how research should be carried out and put into practice. Organizations that fund public health research, such as the Canadian Institutes of Health Research (CIHR), now make it essential that research teams include patient and community research partners in the research studies they fund. Graduate students are students who have completed an undergraduate degree and are working to obtain Master or Doctorate degrees. Completing these degrees often includes a comprehensive research project. This project provides an opportunity for them to get real-world experience working with patient and community members to ensure their projects are relevant to what matters to people and to learn how respectfully and inclusively work with patient and community members. Academic institutions, like universities, are often slow to keep up with this evolving idea and practice. Nine students from a University of Calgary graduate course about Public and Patient Engagement (PPE) in health research, collectively with their three course instructors, wrote this commentary to help universities, researchers, and patient and community members to start and keep discussions going about how to best do this. We hope to inspire all universities to embed PPE in their graduate studies programs and courses. We also hope to initiate further discussion, including from patient partners who have shared their lived experience insights to graduate student research studies, mentorship and governance roles in health science graduate programs and curriculums and other students.
