‘Inspiring Stories’ with Sheila Stranks
Patient and Public Involvement (PPI) contributor at the Southampton Clinical Trials Unit
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
This month’s ‘Inspiring Stories’ features a guest blog from Sheila Stranks, a Patient and Public Involvement (PPI) contributor at the Southampton Clinical Trials Unit. Sheila’s blog was originally written as part of National Patient Participation Week in June 2020 and she has very kindly given permission for us to use it again.
How did you get involved in PPI?
In early 2019, I was diagnosed with lymphoma and began treatment at Basingstoke hospital. The hospital has a lot of connections with Southampton Clinical Trials Unit for lymphoma trials, and though I was not part of a clinical trial myself, when discussing my treatment with my consultant she would often mention the team in Southampton.
One of my good friends also works on clinical trials. When I was going through treatment, she was always there supporting me over the phone and on emails and I began to send messages about my experiences – sometimes funny, sometimes not funny. She suggested I might like to get involved in giving the patient’s perspective on clinical trials research.
I began talking to a team who were looking at setting up a trial related to care homes. My mother is unfortunately in a care home, so a lot of the issues we were talking about felt very pertinent to me. I just gave my opinions on things that would be important to me if I was going to be in a trial and it must have been helpful as my involvement grew from there. Unfortunately, that particular trial didn’t get funded, but I have since started getting involved in some of the lymphoma trials at the unit.
Why do you think PPI is important?
I used to work in marketing for a pharmaceutical company, so I was aware of patient involvement, but I did not know a great deal about how it was carried out. However, I’d always felt quite strongly about making healthcare messaging simple for patients and ensuring that communication is clear and understandable to all.
I was very lucky when I was last being treated in that I had some amazing medical staff who when I said ‘I don’t understand this bit’ were very good at making it clear to me. But too often I found that information provided for patients about their condition, various treatment options or involvement in trials was not at all simple. I have a science background so if I was struggling, then for someone who has never been interested in science or has a different background, it must be really tough.
When you have researchers and clinicians who are so involved in such a niche area of science, it can be hard for them to explain it in lay terms. But that is where PPI can have a huge benefit. It helps that I’m not intimidated by the big words and the niche subjects – if I don’t understand something I will ask, and I’m not sure everyone does that when they are getting treatment or being asked to be in a trial. But remember, there are no silly questions. If you have a question, the chances are other people will have it too.
The idea that I can perhaps make a little bit of difference to how research is carried out, as somebody who has seen it from both sides, that’s really what I want. I like to do things where I can use my brain, and if I can also give a little bit back, then that’s great.
What would you say to someone thinking of becoming a PPI contributor but is worried that they may not understand the science?
I would say don’t worry, because the researcher cannot do what you’re about to do! We assume that the researchers know everything, but the reason they are asking other people, the reason they are asking you, is because they want that extra insight that you can help to provide.
There are plenty of areas where you can contribute to the more holistic and logistic elements of a trial; things as basic as whether you can get a car parking space at the hospital where you go for trial treatment, whether a document makes sense to a non-scientist, or whether a trial protocol would make life terribly complicated for the people taking part. And if you spot a potential issue, you can suggest another way, not to do the science of course, but another way to get the information across or to make taking part in a trial a little easier for patients. All the while, your job is to think about the patients and their families and say, ‘if it was me, what would make my life easier’. You are there for a reason and your input as someone from outside the research team will be extremely valuable to that project.
How can researchers make PPI easier for people to get involved?
Since I’ve been involved in PPI, everything has been done virtually because of the COVID-19 pandemic, and I think it’s great if it can continue in that way in some capacity because it means people with less time, other commitments, or who may have accessibility issues can all get involved.
However, if eventually we do return to face-to-face meetings I would very much welcome the opportunity, because I think it’s easier when you can see people and their reactions and emotions, and I do hope we can do it in person in the future.
If you would like to find out more about Patient and Public Involvement with the Southampton Clinical Trials Unit, please visit their PPI webpage https://www.southampton.ac.uk/ctu/ppi/patient-and-public-involvement-at-sctu.page or email Liz Allaway – firstname.lastname@example.org.
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