Why Patient and Public Involvement (PPI) is so important
Patients and the public bring a wealth of ‘lived experience’ and provide valuable perspectives on the way in vitro diagnostic (IVD) tests should be developed. Our dedicated Patient and Public Involvement (PPI) Group helps to identify unmet needs and gain feedback on early-stage innovations. The group meets regularly and delivers research feedback that adds tangible benefit and value to the NHS.
Here, Chairman of our PPI Group, Mike Shepherdson reflects on his involvement with NIHR Leeds MIC and why he is keen to encourage participation.
How and why did you become involved with the NIHR Leeds In Vitro-Diagnostic Co-operative also known as the NIHR Leeds MIC?
My relationship with the Leeds Teaching Hospital’s Trust began in the early seventies when I experienced kidney failure and was treated at St James’ Hospital with kidney dialysis and then subsequently a kidney transplant in 1974.
I became aware of the work of NIHR Leeds MIC via one of its scientists, who understood the experiences I had been through as a renal patient and felt that I could be a valuable resource as a patient ambassador. I also had a link to the organisation via Associate Clinical Director and Renal Theme Lead Andy Lewington, who I knew from my time as a renal patient. At this point in my life I had recently left the corporate world and was looking for a new challenge, where I could use my life experiences to give back.
Why do you think being a member of the PPI group is suited to you?
I am a naturally inquisitive and questioning person and I think these characteristics are useful for anyone joining in PPI activities. I give my perspective as both a previous patient and also as a ‘layperson’, with no scientific or medical experience. I do have a natural interest in renal medicine as a transplant recipient but I’m not just asked about kidney related projects, the role is quite broad and covers lots of different areas of medicine, including oncology, musculoskeletal and infection diagnostics.
What do you find most interesting about being part of the group?
When I first joined the PPI group the relationship between the University, the Trust and industry was explained to me. NIHR Leeds MIC is a collaborative of these organisations/sectors and I find this structure fascinating. I think most people believe medical research falls within the remit of either a hospital trust or a university or both but I think there’s a lack of knowledge and understanding around the input from and value added through the involvement of industry. In Leeds this collaborative approach involves both SME and larger industry partners and I have really enjoyed finding out more about how this collaboration works and how all of the pieces fit together.
What sort of things do you get involved in?
We get involved in a number of interesting and exciting ways. Sometimes this involves sense checking communications from a patient perspective, whether its content that invites patients to be involved in a trial, informs them about a new IVD test and how it might benefit them or asks them to be part of a research programme. Our role is to ensure that things make sense, are explained using simple and non-technical language and also that there are no red flags when it comes to what a patient might be being asked to do. We input into documents to make them more readable and understandable for the average person in the street. What does it look and feel like are there any ethical issues and how does it make the reader feel?
Sometimes IVD companies will come and present how a new device works so that we can provide our thoughts and feedback from a patient perspective.
We also have discussions around what might be inhibitors to people using or engaging with certain things. A good example of this was the Bowel Cancer self-testing diagnostic that was only receiving around a 40% response rate. Our feedback contributed towards the test changing to encourage a higher response rate.
Health Economists can also be involved in our meetings which gives a very interesting perspective on the cost implications of certain initiatives to the NHS. Its particularly educational to be a part of these conversations and to understand the wider implications of new tests being adopted.
How has your role evolved?
In the early days, input from the group was more of a compliance driven exercise to support with funding applications whereas now it’s a much more integrated and value-added part of the whole process.
What are the benefits of being involved in the PPI Group?
Everyone involved in the group brings different life experiences and medical condition experiences and this helps when inputting into a research study. By nature you do learn a lot along the way and I personally find this very rewarding.
How much time do you have to commit to the group?
We meet as a group quarterly and during that session, there will often be a presentation, from the researchers at NIHR Leeds MIC. They might ask us for some input either there and then or for us to think about it and email back to them. In between the meetings we may also be asked for quick feedback on things over email. Involvement in the group is entirely voluntary and everyone has the option of whether to feedback on something or not but it is never overly onerous nor does it take up a lot of time.
What have been key stand out projects for you?
I was involved in the very early stages of a huge campaign, into Lung Cancer screening which involved mobile scanners going into areas where there was a high incidence of lung cancer, providing a holistic approach of both diagnosis and preventative advice. This was a very interesting and innovative project that I played a small part in.
The ‘gene first’ study is also one I was involved in which looked at the link between gene sequencing and personalised medicine for Bowel Cancer.
I’ve also worked closely on a project to define more effective ways to test urine of catheterised renal patients as well as a number of studies relating to Acute Kidney Injury. Renal projects are of particular interest to me as a result of my experience as a kidney patient, my involvement with the NIHR Leeds MIC has led to me working with other related organisations on a whole range of renal research programmes and studies, including a very significant programme with Kidney Research UK.
What is the TRIADD trial and how are you involved?
TRIADD is an upcoming feasibility study into kidney health, post-transplant, with funding awarded from Leeds Hospitals Charity. The study is essentially about finding a better way of monitoring the health of a transplanted kidney and ultimately better predicting donor kidney rejection, facilitating earlier clinical intervention. Mark Lobb, the Clinical Scientist involved in the project explains it very well HERE.
The PPI group will be involved right from the beginning of the study, providing feedback on patient communications throughout its roll-out.
Why do you encourage others to get involved in Patient and Public Involvement?
Whilst I joined the NIHR Leeds MIC PPI Group at a time of change in my life and when I did have the available time, I like to think that I would have still joined had I also still been working fulltime as it was something I was very keen to do and something I saw as being important.
The process can feel daunting and a bit intimidating to those who have never been involved. You are involved in conversations with highly skilled and experienced scientists and clinicians but our job is to bring our experiences as people without that technical knowledge to ultimately help with how things are explained to patients. We absolutely don’t need to be scientific or medical experts that’s not the point of our involvement. I have found during my time in the group that there really is no such thing as a silly or wrong question, because all questioning leads to a better outcome and that’s what we are there to do.
It would be great to attract younger people into the PPI group, as well as members from a more diverse range of communities. The NIHR Leeds MIC does a lot to promote the benefits of being involved in research to under-represented communities that traditionally haven’t been involved and it would be great to see this shift happen. Greater diversity within the PPI group would undoubtedly make for more reliable, balanced, relevant and representative outcomes.
I would say to anyone interested to get involved, you have more than enough experience; patient input is really valued and together we can make a difference.
How would you sum up your involvement with the PPI Group?
For me it brings the opportunity to learn and gain knowledge into a whole range of different things. Knowing about new innovations that are potentially coming further down the line is encouraging and enlightening and allows you to feel optimistic and positive about the future.
Being part of the wider team at NIHR Leeds MIC also introduces you to a whole team of experts, whether that’s clinicians or academics or industry representatives and it feels rewarding to be part of a collective that is working towards making changes for good and improve outcomes for patients.
There is a great sense of satisfaction that comes from all of this for what I don’t believe is a huge commitment of either time or effort. The team is very supportive and there is so much great research going on in Leeds, I’ve learned so much and feel that I’ve contributed to some research programmes that really can and do improve patients’ lives.