Patient and Public Involvement – A reflection from Alasdair

Alasdair Ferguson is a member of the PPI panel for the project

I am lucky enough to be part of the Patient and Public Involvement (PPI) Panel for the Cancer and Society in the 21st century project, the joint initiative between the University of Edinburgh and the University of Leeds, and supported by the Wellcome Trust. I am particularly interested in how developments in cancer research and care are changing the care cancer patients receive at every stage, having had a recent cancer diagnosis myself.

Members of the PPI panel had a stimulating and fascinating meeting on Monday 8th May when we heard about the progress of the research project to date, and we even had a shot at interpreting the results of some of the qualitative research – we did not find this easy so ‘respect’ to the research team!

In my own situation, having received a diagnosis of prostate cancer I was asked to choose between three different types of treatment (each with its own range of positive and negative outcomes). My response was to voraciously gather information – I made use of the excellent materials produced by Prostate Scotland, I spoke with three ‘buddies’ provided by the Edinburgh and Lothian Prostate Cancer Support Group, I questioned the consultants on what I had researched (particularly on side effects) and – dare I say it – I used the internet extensively, not always with helpful results.

All this helped me to decide which treatment to go for, and I have no regrets about my decision. But I am very conscious of the fact that I had the resources and the knowledge to carry out the research, the time to do it, and the confidence to make the decision with the support of friends and family. But I am also very aware that there are a lot of people out there who may not be in a position to make decisions in this way.

The future will bring great changes to cancer diagnosis and treatment, with stratified cancer medicine (new tests to detect and test for cancer, advances in tailored treatment and more information being gathered through clinical trials). How are we to make sense of the information, and in what form will it be provided? How can we make sure that no-one is excluded from this revolution? The project deals with issues around cancer research and care and the changes that are happening, and asks some of these questions.

Whatever the future brings, it is vital that the patient is at the centre of the whole diagnosis and treatment process.

One of the most enjoyable parts of being a part of the panel has been the opportunity to meet other patients in the same boat, every one with a different story to tell. Nothing can prepare you for a cancer diagnosis but talking and sharing can help you get through it.