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.

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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.

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The US president repeatedly advised people, “Don't take Tylenol,” but scientists say that strong evidence between the medication and autism is lacking.

Read the latest article version by Aima Molati, Razieh Safarifard, Emma Nicholson, Mary Nevin, Veronica Lambert, at HRB Open Research.

Young people’s involvement in mental health research enhances its relevance and impact. Involvement means conducting research with young people rather than just about them. However, under-representation persists among certain groups of young people, including ethnic minorities, those with disabilities, from lower-income households, with immigrant backgrounds and young people communicating in a language other than their first language. This systematic review applies the Behaviour Change Wheel (BCW) to explore barriers and facilitators to involving under-represented young people in mental health research and identify potential strategies for improvement. Five electronic databases and grey literature were systematically searched. Included studies focussed on children and young people (aged 8–25) from under-represented backgrounds involved in mental health research. The BCW was used to categorise barriers and facilitators as well as to map strategies to Intervention Functions. Five young people formed an oversight group, with three serving as co-researchers, contributing to search design, screening, data extraction and discussion. Twenty-seven studies from seven countries met the inclusion criteria. The majority of barriers and facilitators were linked to physical and social opportunity. Digital exclusion, time constraints, bureaucratic hurdles and mistrust of researchers were all barriers. Facilitators included flexible structures, inclusive communication and relationship building. Reported strategies to improve involvement aligned with enablement and environmental restructuring. Inclusive, adaptive research practices and improved reporting are needed to meaningfully engage under-represented young people in mental health research. Future research should prioritise perspectives of under-represented young people to better understand and address the barriers they face.

Background Healthcare navigation services help individuals access timely and appropriate care within complex health systems, particularly those facing system...

Patient and family advisors have served as an integral part of a collaborative, province-wide learning health system in Alberta for more than a decade, contr...

26 outstanding scientists and health professionals will receive Michael Smith Health Research BC Scholar and Health Professional-Investigator (HP-I) salary awards, providing the support they need to e...

Dr. Leah Lambert is building a research career that’s helping to reshape cancer care in BC and across Canada — making it more equitable, compassionate, and responsive. For Dr. Leah Lambert, a clinical...