The multiyear gap between the translation of research evidence into changes in practice at the bedside and health policy is well established. A considered approach is required to address this gap whil...

Background Patient-oriented research is becoming an established mode of healthcare research in Canada. It is supported by the Strategy for Patient-oriented Research (SPOR), launched by the Canadian Institutes of Health Research. One core element of SPOR is the SUpport for People and Patient-oriented Research and Trials (SUPPORT) Units, which is tasked to promote and facilitate patient-oriented research across provinces and territories in the country. Under the strategy, patient partners are welcomed and engaged as equal team members from the beginning to the very end of health research projects to share their lived experience with a medical condition and their interactions with healthcare systems. Main body In this Commentary, two patient partners reflect on how they worked hand-in-hand with the BC SUPPORT Unit to co-develop activities to support patient-oriented research. This was achieved through mutual understanding, building trust, and staying true to SPOR values. Through a variety of roles - including serving on committees and working groups, initiating research projects, and participating in knowledge translation activities like webinars and conferences, the patient partners and the Unit grew stronger together. Conclusion This commentary exemplifies how a national health research strategy can foster alliances, where individuals within an organization encourage and empower each other to drive progress in health research.

This is the introductory paper in a collection of five papers on the BC SUPPORT Unit, a component of the pan-Canadian Strategy for Patient-Oriented Research (SPOR), and is match funded by the Canadian...

Patient-oriented research (POR) engages people with lived experience as partners in health research priority-setting, design, and knowledge translation, ensuring research outcomes are relevant for peo...

Including patients and next of kin as partners in research can help promote the development and dissemination of results that are inclusive, usable and relevant to health service settings. However, the impact of such involvement remains largely anecdotal, necessitating research to identify methods for achieving meaningful involvement. The aim was to examine how patient partners are involved in research across health service settings by addressing three objectives: (1) How are patient partners involved in the research process? (2) What is the impact of involving patient partners in research? (3) What defines effective patient partner involvement in research? We conducted a scoping review by searching five databases (Embase, Scopus, MEDLINE, CINAHL, PsycINFO) and grey literature. Published reviews within health service settings examining patient partner involvement were included. Protocol papers and reviews on patient involvement in treatment and care were excluded. The review adhered to Arksey and O’Malley’s methodological framework and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Checklist. A total of 124 reviews were included. Most reviews have been published after 2014, primarily from the United Kingdom, Canada and the United States of America. Patient partners were involved with consultation and collaboration approaches in different stages of the research process, including identifying and prioritising (n = 49), designing (n = 57), managing (n = 40), undertaking (n = 53) and disseminating (n = 51) and less in commissioning (n = 11), implementing (n = 6) and evaluating impact (n = 17). Impact reporting varied, with few reviews (n = 11) explicitly defining ‘impact’ and its related concepts. Sixteen key enablers for effective patient partner involvement were identified. The most reported enablers included partnerships built on trust and inclusive communication (n = 56), training and support for patient partners (n = 53), flexibility (n = 48) and adequate resources (n = 45). A significant gap exists in defining and measuring patient partner involvement. Adequate resources and training are essential for furthering trust-based, inclusive partnerships between researchers and patient partners. Future research should prioritise improving impact assessment, addressing power imbalances and refining best practices to enhance effective involvement. Two authors contributed with lived experience as patients and next of kin. Four patient partners were consulted about the results, one of whom coauthored this scoping review. Patients and next of kin are encouraged to participate in planning, conducting and evaluating research studies. This involvement can generate more diverse, usable and valid research results. However, what constitutes ‘good enough’ involvement has not been thoroughly investigated. We aim to describe how patients and next of kin can be involved in research by answering three main objectives: (1) How are patient partners and next of kin involved in research? (2) How does involvement change the research? (3) What makes patient involvement in research work well? We carried out a scoping review, a type of research that maps out what has been studied so far, to summarise how researchers report involving patient partners in their studies and how this involvement affects the quality of the studies. We looked at 124 reviews. Most of the reviews were published in the United Kingdom, Canada, and the United States of America. Patients and next of kin take part in different research, mostly by giving advice or working closely with researchers. However, most reviews did not define what impact or related terms mean. Most also pointed out that researchers do not report clearly how patient involvement makes a difference. Sixteen enablers were found to foster the effective involvement of patient partners. In short, good teamwork based on trust, clear communication, and enough funding, training, and support is key to making patient involvement work well. We suggest that future research should create better guidelines to support effective involvement and find ways to measure its impact.

Introduction Patient and public involvement and engagement (PPIE), in its various forms, offers a wide range of potential benefits to research, health services and systems, and to those involved in this collaborative process. As PPIE has expanded over the years, so too have expectations regarding the evaluation of its effects and impacts. Methods We conducted a narrative review synthesis of review articles around measurement of PPIE impact – conceptualising ‘impact’ to include any type of effect on people or processes, both proximate and longer-term. We searched PubMed, Cochrane Library of Systematic Reviews, and CINAHL electronic databases and conducted hand searches. Inclusion criteria comprised: public involvement, reporting impacts of public involvement, and using a review methodology. This yielded 27 review articles based on studies in the UK, US, Canada and Australia. We employed a three-part analysis process: 1) extracting all subcategories of impact reported into Excel (n = 37); 2) combining and categorising this list into primary and subcategories of impact based on thematic analysis; and 3) cross-checking these categories with the original review. Results Our review of reviews indicates that studies often do not report impacts of PPIE activities and when they do, they report a wide range, with little consistency across studies. We classified four broad types of PPIE impacts on: people (PPIE contributors, researchers, healthcare staff and policymakers), different phases of the research process, services and systems and on PPIE processes themselves. Across these categories, the most commonly documented impacts relate to impacts on PPIE collaborators, including individual empowerment and recovery, on researchers, improving their understanding of and collaboration with people typically excluded from research and on earlier phases of the research process. Studies reported both positive and negative impacts. Methodologically, previous evaluations of PPIE impact predominantly relied on retrospective self-reporting, with little triangulation from other data sources or prospective data collection over time. Conclusion The impacts of PPIE appear to be under- and inconsistently reported. More robust evaluation of PPIE impact, drawing on the broad categories we present, offers opportunities for PPIE contributors, researchers and funders to better understand the effects of these investments.

There is a growing emphasis on involving patients and the public in healthcare research. This is especially true in qualitative healthcare research, w…

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored.This commentary addresses these omissions: What is the impact of all this focus on measuring impact? How is the language of impact shaping the debate about, and the practice of, public involvement in health research? And how have shifting conceptualisations of public involvement in health research shaped, and been shaped by, the way we think about and measure impact? We argue that the focus on impact risks distorting how public involvement in health research is conceptualised and practised, blinding us to possible negative impacts.We call for a critical research agenda for public involvement that [a] considers public involvement not as an instrumental intervention but a social practice of dialogue and learning between researchers and the public; [b] explores how power relations play out in the context of public involvement in health research, what empowerment means and whose interests are served by it, and [c] asks questions about possible harms as well as benefits of public involvement, and whether the language of impact is helpful or not.

To develop a retinal detachment-specific Patient Reported Outcome Measure, by involving patients in item (question) development.

This chapter will consider to what extent patient engagement can move us toward affective justice. I will in particular explore the potential of increased patient participation to provide affective resources, opportunities, and recognition for patients. This may...

Background Pragmatic clinical trials (PCTs) offer insights into real-world intervention effectiveness, but they may involve challenging ethical issues. Empirical ethics research may inform deliberat.....

Background People with lived experience (pwle) of stroke including survivors and informal caregivers offer critical insights into research needs. This study aimed to identify stroke rehabilitation res...

Read the latest article version by Susan Channon, Lena Choudary-Salter, Kate Davies, Tina Prendeville, Susan Barry, Heather Strange, Aimee Middlemiss, Rebecca Milton, Julia Sanders, Sara Kenyon, Aled ...

One of the major frustrations, for researchers and patients alike, is the inordinate time it now takes for people to have an opportunity to participate in

Fifty percent of Acquired Brain Injury (ABI) survivors experience fatigue. Symptom management in post-acute rehabilitation, where rehabilitation adherence is essential, is lacking. Research suggest...

Transgender and gender diverse (TGD) individuals face minority stress and often avoid the emergency department (ED) due to previous negative experiences. The goal of this review is to prepare the eme....

Background: Preventing diabetes is a priority for governments and health systems worldwide. Artificial Intelligence (AI) has the potential to inform prevention and planning. But there is little guidan...

The Yukon Status of Women Council has received more than $330,000 from the federal government to carry out the work alongside community partners, including Whitehorse's Opal Clinic, the Yukon’s only d...

Background Rare diseases are chronic, progressive, and debilitating conditions, affecting 3.5–5.9% of the global population. Clinical research studies are crucial for developing new diagnostic approaches and treatments and for overcoming the lack of awareness and the need of expertise surrounding these diseases. Involving patient organizations in clinical studies is widely considered a promising approach, to overcome barriers and to facilitate research activities. The aim of this paper is to present the actions taken, the relevant results, and the lessons learned from involving a patient organization in shaping, conducting, and disseminating a clinical study on rare patients with Osteogenesis Imperfecta. Results In a context of a clinical study in which patients underwent a comprehensive, fully instrumental gait analysis and an evaluation of specific movement tasks using stereophotogrammetry and wearable sensors, we assessed all the actions taken and the results achieved by the implementation of an original collaborative model between a public institution and a national patient organization. To generalize our collaborative experience, steps and stages of the research process that can benefit the most from the support of a patient organization were identified, experimental protocol drafting, ethic committee approval, patient enrolment, and dissemination. Patients reported positive feedback in a short questionnaire on the use case experience. Moreover, we highlighted the gains and the weaknesses of this approach. Conclusions This experience resulted in several benefits for all the actors involved, strengthening the collaboration between the PO and researchers and fostering a cohesive and cooperative network.

Background People with post-stroke aphasia are often excluded from shaping the research meant to support their recovery. Communication barriers, research norms, and traditional outcome frameworks contribute to a lack of meaningful involvement, particularly in the identification of patient-centered outcomes. While participatory models in aphasia research are emerging, few examples describe how individuals with communication disabilities can lead or co-create research priorities. Main body This case study describes a structured, collaborative effort to center the voices of people with aphasia in identifying meaningful outcomes for recovery. Through a partnership between the Patient Engagement Studio (PES) and the Center for the Study of Aphasia Recovery (C-STAR), two cohorts of Patient Experts participated in accessible training, relationship-building activities, and outcome prioritization sessions with researchers and clinicians. Training included research literacy modules, photovoice, and facilitated discussions. Patient Experts identified four outcome priorities: speech production, self-advocacy and public awareness, confidence and emotional wellbeing, and holistic recovery. These themes emerged from story-based reflections and co-analysis between PES staff and Patient Experts. Accommodations included communication scaffolds (e.g., text, chat, individual phone calls, and email), accessible formatting, simplified language, and attention to scheduling and pacing. Researchers were also prepared to approach Patient Experts as partners, not participants. A second cohort later reviewed and affirmed these outcome domains. The collaboration prioritized mutual learning, co-development of research, and capacity recognition over conventional research timelines or structures. Plain English summary People with aphasia, a condition that affects speaking, understanding, reading, and writing and can result from a stroke, other brain injury, or neurological conditions are rarely included in research about their recovery. Even when research is focused on aphasia, the people who live with it are often not asked what outcomes matter most. In this paper, we describe a collaborative effort among people with aphasia, caregivers, researchers, and a patient engagement team to identify what matters most in aphasia recovery. Together, we co-developed and refined a set of outcomes grounded in lived experience. We refer to the individuals with aphasia and caregivers who joined this project as “Patient Experts”; a term that describes people with lived experience who receive training to contribute as equal partners in research. During our shared training sessions, Patient Experts shared their stories, reflected on recovery, and met with researchers and clinicians to shape the direction of future work. To ensure full participation, we adapted meeting materials and formats to support multiple communication styles; whether speaking aloud, typing in the chat, texting staff, or following up after the session. The Patient Experts identified four key areas that matter most in recovery: being able to speak more naturally in conversations (not just naming words), being able to advocate for themselves and raise awareness about aphasia, building confidence and emotional wellbeing, and making progress in ways that reflect their whole lives, not just language tests. These outcomes were not created for the Patient Experts, but rather shaped by them in collaboration with researchers and clinicians. We also share what we learned about building trust and making space for people with communication disorders to lead. Throughout the process, we continually adapted to better support the Patient Experts. We showed that with the right support, people with aphasia can guide research that affects their lives in a meaningful way. Conclusion This work demonstrates that people with aphasia can meaningfully shape research when communication access and trust are prioritized. Case studies like this contribute to a growing evidence base on inclusive involvement by showing how training, facilitation, and co-construction methods can be adapted for people with communication disorders. Future work will validate the identified outcomes with a broader population and support co-development of accessible outcome measures grounded in patient experience.

Subscription and open access journals from Sage, the world's leading independent academic publisher.

Background Patient and public involvement (PPI) in health research is gaining global momentum through initiatives such as INVOLVE (UK), the Patient-Centred Outcomes Research Institute (USA), and the Strategy for Patient-Oriented Research (Canada). However, its implementation in Africa remains limited and lacks context-specific guidance. To address this gap, the Sickle Africa Data Coordinating Center supported the development of the Patients as Partners in Sickle Cell Disease Research (SCD-PAPIR) Framework to guide meaningful patient engagement and involvement in SCD research in Africa. Methods An iterative, participatory approach was adopted. The process involved the creation of a SCD PAPIR working group comprising SCD patient advocates in 14 African countries; 18 virtual working group meetings, one public webinar, and three in-person workshops. The framework was co-created through facilitated discussions reflecting on prior engagement in SCD research as a patient partner, and best practices for effective patient–researcher collaborations. Patient-only sessions and leadership roles were integrated to ensure safe spaces and to minimise power imbalances. Results The SCD-PAPIR Framework positions SCD patients and their caregivers as citizen researchers. Key to the framework is the principle of subsidiarity, which affirms the agency and experiential knowledge of patients while calling for epistemic humility from researchers. Its core pillars include valuing patient expertise, transparent communication, resource sharing, patient empowerment, collective learning, amplification of patient voice, continuous feedback, and shared benefits. Best practices emphasise two-way communication, addressing power asymmetries, co-learning and patient empowerment, co-ownership of outputs, and formalised PAPIR structures. Conclusion The SCD-PAPIR Framework provides a contextually grounded model for patient-engaged research in Africa and contributes to efforts to decolonise health research by positioning patients as co-creators of knowledge, and not merely a data source. The effective implementation of the framework will require investment in institutionalising PAPIR in SCD research. Future work should focus on designing implementation toolkits, developing PPI training modules for researchers and patient advocates, and adapting the framework to other health conditions.