Beyond Tokenism: How Co-Design with Patients is Revolutionizing Health Research
A new study reveals that truly engaging patients—not just consulting them—leads to more effective, equitable, and impactful health interventions, particularly for historically underserved groups.
The call for “patient engagement” in research often feels performative, a box to check on grant applications rather than a genuine shift in power. Across Canada and globally, funding agencies increasingly mandate patient involvement, aiming for research that is more relevant, equitable, and readily applicable to real-world care. However, all too often, this engagement is superficial – limited to document reviews, nominal advisory roles, or single meetings where decisions are already finalized. Patients are invited to the table, but not empowered to shape the work.
A team of researchers sought to challenge this status quo, focusing on a critical gap in cardiovascular care: the underrepresentation of women. Cardiovascular disease remains the leading cause of death for women worldwide, yet they are consistently less likely than men to be referred to, enroll in, or fully benefit from cardiac rehabilitation (CR) programs. These programs – combining exercise, education, and psychosocial support – are proven to reduce mortality and improve quality of life after a cardiac event. However, many women report that existing CR programs and educational materials simply don’t resonate with their experiences, featuring predominantly male examples, language that doesn’t reflect their responsibilities, and a lack of acknowledgment of their emotional needs.
“If women’s realities are absent from the way we teach and support them, it is not surprising that participation remains low,” explains a lead researcher on the project.
To address this, the team published findings in Patient Education and Counseling detailing a study where they partnered with 11 women with lived experience of cardiovascular disease – some who had participated in CR, others who had not – to refine the educational resources within the Cardiac College for Women, a web-based curriculum developed at University Health Network in Toronto, Canada.
Instead of a one-time consultation, the researchers organized five online workshops over several months, deliberately shifting power dynamics through established engagement frameworks. A woman with lived experience co-facilitated the workshops, participants were compensated for their time, received session summaries, and witnessed their suggestions being implemented in real-time. Engagement was measured using validated scales, but the most compelling evidence came from the participants themselves, many of whom expressed feeling “heard, respected and ‘part of something that will help other women like me.’”
Five Key Areas for Improvement Identified by Patients
The women identified five crucial areas for improvement, moving far beyond superficial changes:
- Accessibility: Participants emphasized the need for clearer navigation, simpler language, larger fonts, and the inclusion of audio options and visual summaries to accommodate diverse learning styles and abilities.
- Storytelling: Facts alone were insufficient. Hearing relatable stories from other women coping with fear, fatigue, and caregiving responsibilities made the information more memorable and motivating.
- Representation: The women called for more diverse imagery and narratives reflecting a wider range of ages, ethnicities, body types, family structures, and financial realities, enabling more women to “see themselves” in the materials.
- Multiple Formats: Recognizing that individuals learn differently, participants requested a variety of formats – short videos, printable handouts, and audio recordings – to cater to diverse preferences.
- Reaching More Women: Participants proposed practical strategies for wider dissemination of the materials, including leveraging cardiologists, family doctors, community organizations, pharmacies, and social media platforms.
These changes aren’t merely cosmetic; they fundamentally reshape the target audience, the user experience, and ultimately, which women are most likely to benefit.
The Difference Between Tokenism and Meaningful Engagement
What distinguished this process from the often-criticized practice of “tokenistic” engagement? Several key factors emerged:
- Real Influence: Participants saw their ideas directly adopted, sometimes verbatim, demonstrating they were co-creators, not simply advisors.
- Psychological Safety: Ground rules were collaboratively established, fostering an environment where respectful disagreement was encouraged and emotions were acknowledged.
- Continuity: Repeated meetings, relationship-building, and follow-up sessions ensured engagement was a sustained process, not a one-off event.
- Recognition: Participants were compensated for their time, formally acknowledged as contributors, and invited to continue as partners in future work.
“Meaningful engagement takes more time and planning than sending a survey link,” a researcher noted. “But it also produces better science.” The women highlighted issues the research team hadn’t identified independently and proposed solutions grounded in real-life practicality.
The study’s implications extend beyond cardiac rehabilitation. When patients are treated as partners, research questions become more relevant, interventions are easier to implement, and findings are more likely to reduce, rather than exacerbate, existing inequities. This is particularly crucial for groups historically excluded from research – women, racialized communities, individuals with lower incomes, and people with disabilities.
For researchers, the challenge lies in moving beyond simply “checking the engagement box” to genuinely sharing power. This requires:
- Inviting patients early in the research process, when there is still room to shape the project’s direction.
- Being transparent about the scope of patient influence and consistently following through on commitments.
- Creating supportive structures – such as repeated workshops, clearly defined roles, and fair compensation – that foster ongoing, respectful collaboration.
Patients are not merely research participants; they are experts in their own lives and essential partners in designing health systems that truly work for everyone. The experience with women living with heart disease demonstrates that when we listen carefully – and are prepared to act on what we hear – research becomes not only more just, but more effective.
More information: Ana Paula Delgado Bomtempo Batalha et al, Engaging women with lived experience in tailoring educational resources for cardiovascular rehabilitation, Patient Education and Counseling (2026). DOI: 10.1016/j.pec.2025.109410
Dr. Gabriela Melo Ghisi, an Affiliate Scientist at the KITE Research Institute, specializes in patient education in chronic disease management and global access to cardiac rehabilitation. Her research focuses on CR development and implementation, with an emphasis on availability, affordability, health system capacity, and strategies to enhance access among underserved groups such as women and ethnic minorities.
Citation: Patients are more than participants: What meaningful engagement really looks like—and why it improves health research (2025, November 28) retrieved 28 November 2025 from https://medicalxpress.com/news/2025-11-patients-meaningful-engagement-health.html.
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