When lived experience is embedded at every stage of research

Summary

Risa Mallory is a retired psychotherapist from Canada. After a serious cardiovascular event in 2018 she became a patient advocate, collaborating with organisations across the globe. 

In this blog, Risa explains why it is so important for research to include lived-experience partners at every stage.

Content

When I first stepped into the world of research as a patient partner, I wasn’t sure how my story and experiences would fit into the highly structured world of protocols, data, and analysis. But over time, I’ve seen that when lived experience is woven into research from the very beginning, the work changes in profound ways.

It’s no longer just about numbers on a chart or outcomes in a journal article. It becomes more about people. People like me and maybe people like you. People whose lives and health are directly shaped by what researchers discover.

Engaging patients as partners in research (rather than merely as study participants) needs to become a cornerstone of more meaningful, ethical, and impactful science. When patients contribute their lived experiences, values, and priorities at every stage of the research process, good things happen. Studies become more relevant, inclusive, and useful to those they are ultimately meant to serve.

Understanding what matters most

One of the most significant benefits of patient engagement is that it improves the relevance and quality of research. Patients bring insights from real-life experience that help ensure research questions, methods, and outcomes reflect what truly matters to them. Instead of focusing solely on traditional clinical metrics, studies are more likely to include patient-centred outcomes such as quality of life, emotional wellbeing, and functional recovery. This alignment between research priorities and patient needs leads to findings that are more likely to be adopted in clinical practice and make a tangible difference in people’s lives.

Enhancing study design

Patient partners also help enhance study design and feasibility. Their perspective often reveals barriers that researchers might overlook—such as the burden of long appointments, inaccessible study sites, or overly complex consent forms. By addressing these issues early, research becomes more inclusive, equitable, and efficient. Recruitment and retention often improve, and study materials become easier to navigate. This results in stronger, more reliable data and greater participation across diverse populations.

Building trust

Another critical advantage is the trust and transparency that emerge through genuine partnership. Historically, research has sometimes been conducted on patients rather than with them, leading to mistrust and disengagement. When patients are involved as equals, helping shape decisions, review protocols, and co-author results, it signals respect and accountability. This transparency strengthens public confidence and ensures that research aligns with ethical standards and social values.

Increasing real-world impact

Patient engagement also accelerates translation and real-world impact. Patients help researchers understand how findings can be applied in daily life, making results more actionable and accessible. They often guide how outcomes are communicated, ensuring that language is clear and inclusive. In doing so, they bridge the gap between research, clinical care, and community understanding - turning discoveries into meaningful change.

Empowering patients

Beyond these practical benefits, patient engagement is empowering. Being treated as a valued partner rather than a passive ‘subject’ can validate lived experience as a form of expertise. Many patient partners describe a renewed sense of purpose and contribution, as their voices influence future care and research for others facing similar conditions. This empowerment also fosters advocacy and leadership within patient communities.

Encouraging innovation

Finally, engaging patients encourages innovation and collaboration. When diverse perspectives come together (scientists, clinicians, and patients), new questions are asked, and creative solutions emerge. Co-designing studies promotes flexibility, responsiveness, and continuous learning within research teams.

In summary, patient engagement transforms research from a top-down process into a shared journey of discovery. It improves quality, builds trust, fosters inclusivity, and ensures that science serves its most important purpose - improving lives.

Share your experience

Have you been involved in a research project that embedded lived experience throughout? How did that involvement help shape things? What do you think the risk would have been of not including lived experience? Comment below (sign up to the hub first for free) to share your thoughts. Or you can get in touch with our team at [email protected] 

More blogs by Risa

• The power of being heard in healthcare

• Why the patient voice matters when things go wrong

• Women’s heart health - a patient safety priority

About the Author

Risa Mallory, a retired psychotherapist from Canada, became an advocate for patient healthcare following a serious cardiovascular event in 2018. Through her collaboration with local, national, and international healthcare organisations and institutions, she contributes the perspectives, priorities, and feedback of patients to healthcare decision-making at all levels, from individual care to organisational policymaking. She firmly believes that knowledge is power and that every individual can impact their health, and the health of their communities, through increased literacy, open dialogue, and advocacy.