A Modality Mid Sussex patient member shares their experience of authentic collaboration in research, and what that could mean for primary care.

​Last year, my world was upended by diagnoses of both kidney cancer and breast cancer. What followed was a whirlwind of surgeries, including a nephrectomy, and ongoing treatments that have left me with life-changing conditions. In the early days, consumed by anxiety, I found myself frantically googling down endless medical rabbit holes. It was during one of those dark, uncertain late nights that I stumbled across the Sussex Cancer Research Centre (SCRC).

​Reading about their groundbreaking work gave me a glimmer of hope. I decided to reach out and share a brief version of my personal story, which they published on their website. That single step transformed me from a passive patient into an active advocate; I joined the SCRC as a Patient Experience Member.

​Speaking Truth to Science: The June SCRC Symposium

​This past June, I was invited alongside a few fellow patient advocates to speak at the annual SCRC Symposium. Standing at a podium in front of medical staff, PhD students, brilliant researchers, and a room full of professors was nerve-wracking to say the least. But we knew we had a vital message to deliver.

​The core theme of my personal talk was: Involve us as patients—not as an afterthought, but as true collaborators.

​During the speech, I challenged the medical and academic community to look at patient engagement through a completely new lens:

​"We are here today to advocate for a partnership that goes far deeper than tokenism. When researchers and healthcare providers work with those who have lived experience as true collaborators, we don’t just offer a nice sentiment—we bring measurable value to your science and your clinics."

​I spoke to them about how patients provide sharper research questions by aligning hypotheses with actual human needs, and how we help define more relevant outcomes. Too often, medicine measures efficacy purely through statistics or data points on a screen, ignoring the human cost of a diagnosis. As I told the audience:

​"You measure efficacy; we can tell you if a treatment's side effects are worth the trade-off in real life. We help you measure what matters... A drug might successfully shrink a tumour, but if the side effects make a patient too sick to get out of bed, the 'success' looks very different in the real world."

​The feedback from the symposium was overwhelming and deeply validating. Organisers shared that many attendees highlighted our words as the absolute highlight of their day, with researchers expressing a "renewed passion for authentic engagement."

​From Words to Action: Real-World Impact

​Since that day, the momentum hasn't stopped. The research community didn’t just applaud and move on—they listened.

• ​Securing Funding: We were recently approached by a Principal Research Fellow to provide critical feedback on a non-technical summary for an upcoming seed funding round, ensuring the patient perspective is baked into the project's very foundation.

• ​Steering National Projects: We have been invited to join the steering groups for two major upcoming initiatives led by Dr. Frances Pearl (Lead for Data and Sample Re-use at Cancer Research UK): an observational clinical trial for Cancer of Unknown Primary (CUP), and the CRUK Data Hub Pilot, which aims to unlock and centralise vital cancer datasets for researchers . 

  A Voice at Every Level: Bridging the Gap to Primary Care

  ​What we are achieving at the university and national research level proves a fundamental truth: As patients, we have a voice, and it should be listened to, heard, and acted upon.

  ​But this missing voice isn't just needed in specialised cancer research; it is beautifully relevant across the entire frontline healthcare system. This spirit of advocacy matters just as much at the grass roots level within our daily primary care, where the foundation of our health is built.

  ​"The exact same principle of authentic collaboration can thrive right here at home. We have a wonderful opportunity for Modality Mid Sussex to truly weave patient insight into the fabric of their care by actively partnering with our Patient Participation Group (PPG)."

  ​Whether we are advising on multi-million-pound data hubs or navigating day-to-day healthcare at our local surgeries, the mandate is identical. Patients living with chronic or life-altering conditions bring an invaluable expertise to their own care. From improving appointment systems to enhancing how long-term conditions are managed, primary care works best when providers and the PPG collaborate as true partners.

  ​We are moving past the era where patient engagement was a mere checkbox on a funding application or a clinic's feedback form. We are true partners in health, science, and community medicine—and we are just getting started. As a patient myself, I want to be able to actually see this collaboration in action