Patient and Public Involvement and Engagement: Working together to improve Cancer Care by Sue Duncombe

My story

My husband was diagnosed with prostate cancer age 52. For the next 4 years he had a range of treatments and we endured the roller coaster journey that many cancer patients and their families go through. Then the dreaded day came when he stopped responding to treatment and was told there were no other licensed drugs available. At this point he was very poorly and the future looked grim.

However, he was entered into a clinical trial of a new drug, which had a huge positive impact on his life. He could return to the things he enjoyed doing such as playing golf. Eventually this drug stopped working and he died 12 months later, age 57. However, we’d had a brilliant time during 10 of those last 12 months.

 
How could I help improve research?

I wanted to do what I could to stop other families going through what we’d been through and started fundraising for cancer research charities. The more research could be done, the fewer people would die from this devastating disease. I was in awe of the doctors and researchers who could develop new tests to diagnose cancer as well as new treatments.


Patient and Public Involvement and Engagement (PPIE)

By chance I saw an advert from a group of researchers. They were asking for people who’d been affected by cancer to join a meeting to give their views on some research they were planning. Until then I’d assumed researchers only interacted with patients when they needed them in clinical trials. I soon realised that health care research virtually always has patients or other lay people involved to give their views. This is called Patient and Public Involvement and Engagement (PPIE).

 
PPIE with researchers in Nuffield Department of Primary Care Health Sciences

Over the last 7 years I’ve been involved with researchers in a range of different cancer studies. I’m currently involved with this department in a study looking at trying to diagnose cancer early through routine GP blood tests. If cancer can be diagnosed at an early stage there are more treatment options and a better chance of survival.

There are 10 of us in the PPIE group. Everyone has different experiences. The one thing which unites us is that we’re all keen to improve early diagnosis of cancer.

The researchers are really approachable and explain the research in language that we can understand. They’re keen to get our views on different parts of the research and the results they’re getting. They’re always very appreciative of our contributions and I feel part of their team.

Who can get involved?

Anyone who wants to add their views to research. You don’t need any medical background or even GCSE Science. It’s your personal experience and views that researchers want. They’re keen to get views from a diverse group of people.

What do I get out of it?

For me “Research is where hope starts”. I feel I’m doing my small bit and adding value to the work of the researchers. As I’ve developed experience over the last 7 years I’ve become increasingly involved. I’ve been the lay member on expert funding panels, deciding which research gets funded. In addition, I’ve done training for researchers, such as explaining how they can best work with patients to add value to their research.  It’s very satisfying and rewarding.