By Sam Alexandra Rose
Our Patient and Public Involvement Manager Sam blogs regularly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch Syndrome.
I am writing to you from the other side of the desk. Well, it’s still the same desk, but my position has changed! I am pleased to have turned from being a patient and blogger for Bowel Research UK into the charity’s new Patient and Public Involvement (PPI) Manager. I thought for my first blog post in this new role I would explain for the uninitiated what PPI is, why it’s so important, and how you can get involved should you hopefully choose to.
What is Patient and Public Involvement (PPI)?
PPI, as we will refer to it from now on to save my fingers, is when patients and members of the public become directly involved in the planning and running of new research projects to help improve their outcomes. It’s also known as PPIE (Patient and Public Involvement and Engagement).
What does PPI involve?
There are lots of different ways patients, families, caregivers and other interested or affected parties can contribute to research, such as:
- Helping funders to prioritise research: What issues are important to you, what obstacles are you facing with your illness or condition and what would you like to see change for the better in medicine, the NHS or elsewhere? Your input makes a difference before research even begins.
- Offering advice, opinions and comments on research: This may be as part of a focus group or steering group. For example, you may be asked to comment on issues you face and whether a proposed solution, new technology, a product prototype, or other way forward could solve or alleviate a problem effectively.
- Helping to develop research materials: This could be creating or reviewing leaflets, questionnaires, webpages and other materials that are being used in research.
These are just some general examples of what PPI is. It’s important to note that participating in qualitative research is not PPI. For example, if a study involves interviewing patients, and those patients’ anecdotes are a core part of the research, this isn’t patients being involved in the research – it’s patients being the subject of research.
There are also differing levels of PPI. People may be consulted at various stages of the research process to provide their input, for example during periodic focus groups. Or there may be a closer collaboration between researchers and the public, in which the two work together to make decisions and may even co-produce the research.
Why is PPI important to research?
Patients and caregivers offer very different perspectives from researchers, and those perspectives can be invaluable in ensuring studies are a success. After all, if a solution to a problem is being developed, it’s a good idea to get feedback from the people affected by the problem to see what they think about the proposed solution.
Patients bring their lived experiences to the table, and while of course researchers may be deeply empathetic to people living with an illness, there are sometimes things they just don’t know about an issue unless they’ve lived with it themselves. Patients can help ensure research is relevant to their needs at all stages of the process.
How can you get involved with PPI?
We have only scratched the surface of PPI in this article, but if this has piqued your interest, why not take the next step?
At Bowel Research UK we have a programme called People and Research Together, (the PaRT network). I look after this network and regularly send out new opportunities to get involved with research, such as focus groups.
And, if you’ve not read my previous blog posts, I bring my own experience as a patient to this new role, being someone who’s had bowel surgery and a J-pouch, and who will have lifelong regular surveillance because of Lynch Syndrome.
You can find out more about the PaRT network here and sign up with this form. Alongside the charity newsletter, you’ll receive the PaRT newsletter every month with details of all the latest opportunities.
I’ll also be working on various online events and projects to bring our research community together, and I’ll share details of those in the newsletter, too. There’s no obligation to get involved with anything and you can opt out at any time, but by signing up you’ll receive this information and be able to decide if and how you would like to take part. Together we can help improve experiences and outcomes for patients with bowel cancer and bowel disease.