Keith Wilson is a Research Patient Ambassador at Liverpool Heart and Chest Hospital NHS Foundation Trust – the only known full-time salaried NHS employee in such a role. His responsibility is to make sure that clinical research studies being undertaken within his Trust are conducted with the best interests of the patients’ health and wellbeing at all times.
Keith’s role is widely recognised nationally and he is a regular speaker on the importance of patient ambassadors and the role of patient involvement in improving clinical research. In fact earlier this year he was asked to speak at the National Institute for Health Research (NIHR) 10th year anniversary conference in London.
Keith also sits on a number of regional and national research-related advisory groups as a patient and public representative.
More important than the role Keith undertakes, is his personal experience of being both a patient and a participant in clinical research. As well as having experienced a series of heart attacks, Keith has a long term heart condition that has required extensive treatment and care. These experiences led him to get involved in clinical research at Liverpool Heart and Chest Hospital, which then evolved into the role he does today. We met Keith to find out about his journey into the world of clinical research…
Can you tell us a little bit about yourself?
My background comes from working on a market stall in Huyton Village (on the outskirts of Liverpool) for approximately 25 years selling pet foods. Before that I had a number of other jobs – all non-academic. I have lived in Page Moss most of my life, on a typical working class housing estate. I met my wife, who was a nurse, while I was a patient at Liverpool Heart and Chest Hospital after my first heart attack in 1997 at the age of 37. I have also had the benefit of knowing most of the nursing staff and clinicians from the days when they were either student nurses or registrars. I have been coming here for a very long time.
How did you first become unwell?
Originally I developed chest pain early one Saturday morning. I thought it was indigestion, but after half an hour the pain was unbearable. I phoned an ambulance and although I was taken to a local hospital, my heart attack was misdiagnosed and the damage was already done. I was fortunate to be transferred to Liverpool Heart and Chest Hospital and straight away the consultants investigated my condition and did the appropriate tests. Since then, I’ve had a number of small heart attacks.
I have heart disease, not only in some of the larger arteries, but also in the smaller vessels. This meant that I was in constant pain when I walked and I was getting short of breath. I needed further treatment, which involved having some stents fitted. I had what they called a rotablator where they drill the artery out with a device to take the plaque away. I was in constant pain and I genuinely thought I was never going to be pain-free ever again. Simple things like watching TV or moving around basically resulted in four years of hell. I would only plan one hour at a time – and I was convinced I would never reach the age of 40.
Was the pain you were suffering the worst part of your illness?
No. The physical pain was bad, but the biggest thing for me was the loss of control of my life. I have always been, or thought I was, an independent person. But to have a disease or a condition that I had no control over and being at the mercy of other people’s decisions – if and when I would get better – was something that I just couldn’t accept. It was difficult for me to say “well whatever you decide is best for me” because I have always been in control.
How did the treatment help you?
The treatment itself has helped my physical condition, but more importantly the confidence and support that I was given by the clinicians and the nursing staff was vital to my recovery. It is easy for people to say “Oh things are going to be okay”, but in the cold light of day when the lights go off on the ward and you feel alone and vulnerable, then things feel different. So it took a long time for me to be reassured that the pain I was getting was only pain and potentially would not do any further damage and was not life threatening. It was the psychological reassurance and support from the team looking after me, as much as the physical treatment, that helped.
Your treatment resulted in you becoming involved in clinical research, how did that come about?
Usually I think people may be asked to get involved in research because it is presented as a way of collecting information on how they respond to their normal plan of care, or as another potential treatment option. A study may help clinicians find the best course of treatment for a condition, so there are very rarely any risks or reasons not to do it. But in my particular case, as may be the case for other people with a very serious condition, I believed it was the only way forward for me to find a different way of feeling better. I had been treated with the utmost care and respect but I couldn’t see beyond the fact that I was just in pain. It was a condition that I believed was going to kill me in a very short period of time and I needed to find a way to take back control and to plan my own destiny.
There were various clinical trials I could have taken part in. I had completed the standard care and treatment that was available. Once you reach that point, you need to look for something different or new and the only way for me to do that was to take part in a research study. For example, I participated in a study that involved injecting a drug called lignocaine (a type of local anaesthetic) into the nerves of the neck, which I have now had done many times, to stop the pain messages sent to the brain from the heart. I would have tried anything to feel better.
Are there other examples of trials that you’ve taken part in?
I have taken part in a number of trials with various outcomes, but my most memorable was the HEAT PPCI clinical trial – although I was never involved as a participant.
The HEAT trial was close to my heart really – no pun intended. The study looked at two antithrombotic drugs which were given to heart attack patients while they were in the catheter laboratory. Both drugs were in everyday use, one cost £400 and the other one was only 47p. The research showed that the cheaper drug gave our patients a better outcome. As well as the benefits to our patients, the research gave us the evidence to change prescribing practice overnight. As a result, this led to significant savings at Liverpool Heart and Chest Hospital, as well as the potential savings for other healthcare organisations globally who were using the same treatment.
Through my experience, I knew about the procedure and exactly what was involved from a patient’s point of view. I was firstly given the opportunity to offer my opinion on the study at the planning stages and this led to my full time involvement and I was given extensive training on how to support this research study.
What was it like being involved in the research from the other side of the bed, i.e. not as the patient?
It was good for me and hopefully for the trial, but more importantly for the participants. We wanted the whole treatment and research experience to be the very best it could be. This was my way of giving back the kindness and contributions many people had given in the past to clinical research, which had benefited me by giving me back my future.
This eventually led to your current role as a Patient Research Ambassador for the Trust. Tell us a bit more about the role?
Through my involvement with HEAT, it became apparent to the powers that be within our organisation, when the trial finished, that I was providing a much needed patient voice to research and was showing the benefits of having public and patient involvement formally in place. Due to my involvement with the HEAT trial and the fact I was encouraged to be involved from the start, Liverpool Heart and Chest Hospital thought that public and patient involvement gave a unique, positive patient perspective within clinical research. Financial support for my role was then obtained through a grant from the Lord Leverhulme Charitable Trust. This has secured my role for a five year period and I am just beginning my third year.
My role is to improve the quality of a participant’s involvement in all clinical trials and that includes everything relating from the procedure itself, what is expected of them, what they can expect from the trial, and the documentation to make sure it is in plain English so that everybody can understand it.
I look at the documentation for a study with the help of the Trust’s patient support group, SURE. This group has been established for over ten years and has a vast experience of designing documentation in plain English, as well as being fully informative.
I then speak with the relevant research nurses to discuss the documentation and then when we all feel that it is appropriate and fit for purpose, we recommend that the documentation and the research study is approved by our Research Committee. If there is anything that we feel could or should be improved, we ask for it to be amended. Until that time, a trial will not proceed. We are supported 100% by the Trust and by our Research Committee and by the Head of Research. It is a big responsibility for myself and for the rest of our SURE group but I think it shows the commitment at this organisation for our research to be focussed on the participants involved, rather than the focus being solely on the research study.
What do you think can be done to get patients and members of the public more involved in opportunities to take part in research?
The challenge is that we only tend to contact people in research when they are sick. We miss an opportunity because I don’t know the average age of someone who becomes unwell, and it will obviously vary from one condition to the next, but let’s say it is 40 or 50. That being the case, we don’t contact anybody for about 40 years and then out the blue when you are vulnerable, confused, and unwell, in a strange environment, someone asks “Would you be interested in research?” Is that the right way to do things? I don’t think so.
I think there should be an education module in schools, universities and other places like libraries and community centres, even if it is only a short one, explaining about clinical research. That puts it in the mind-set of people so they understand why we do research. More importantly, when they are asked to take part in research, they will know about it. It is about reaching the general public on the street as much as the academics and clinicians involved in the research itself.
Finally, how would you summarise the positive impact that involvement with clinical research can have on the health and wellbeing of patients?
All of the medicines and treatments we have today, and will have in the future, are a result of participants, people like you and me taking part in clinical research trials. We all have the ability to help make patients – and the NHS – better by taking part in clinical trials which could have a huge impact on our health care now and for the future health of our children and our children’s children.