Published: 03 May 2019
Research Patient Ambassador, Keith Wilson, is passionate about patient involvement. He discusses how he has been helping the NIHR to bring patients and life science companies together to improve clinical research delivery.
The patient voice. Patient engagement. Patient centricity. Patient-friendly. Patient and public involvement.
These are all phrases we frequently hear being discussed throughout the National Health Service and the wider clinical research environment. But why is it important for patients to have a say in clinical research? This is a question I get asked all the time.
My answer is that we have a personal relationship with our condition. We live with it day in, day out, so who could possibly know more, or have more experience to bring to the table?
For over a decade the NIHR has been involving and engaging patients in clinical research but I think most will agree that this has been more commonly seen in academic or ‘non-commercial’ research, compared to research funded by the life sciences industry - ‘commercial research’.
However, things are changing.
#patient centricity
Most life sciences companies are now embracing the patient engagement agenda and, as a result, we are entering a new era of collaboration. This brings with it an opportunity for patients like me to give our experience to the life sciences industry, and to the NHS, for the benefit of everyone. We have a unique perspective which allows us to see things differently and sometimes what seems like subtle changes can make a big difference to our decisions about whether or not to take part in a trial and the way our conditions are treated.
Next question: So why hasn’t this been happening all along?
I get asked this all the time as well, and my answer is always the same - it’s all about trust.
The life sciences industry has an image problem. It’s not entirely its own fault. The media hasn’t helped as it doesn't routinely report on the hundreds of clinical trials that go well each year. However, you can bet your bottom dollar that if a clinical trial runs into problems, it will hit the headlines.
As a result people have misconceptions about the life science industry. This is emphasised by the environment of secrecy that life science companies have to operate within to protect the commercial value of the products and treatments they are developing. This is a necessary part of developing a new treatment because the companies invest millions of pounds and need to have the opportunity to recoup that investment when the treatments come to market (when it is made available to patients through health services).
Unfortunately this culture of confidentiality can foster mistrust and misunderstanding among patients. When I mention taking part in research if I say “for the NHS” the majority of fellow patients will undoubtedly say “where do I sign?” However, if I say “life sciences industry” they’re hesitant.
Making a difference
This is where the NIHR is getting involved and making a difference.
The new NIHR Patient Engagement in Clinical Development Service is bringing together companies and patients so that patients can influence the design of clinical trials and help to make them as patient-friendly as they can be. The NIHR bridges the gap between patients who love their NHS and the life sciences industry. Having worked in partnership with our NHS for over a decade, the NIHR is a trusted, independent facilitator, a non-profit organisation, and can create a safe environment which enables discussions between patients and industry to take place. Patients feel comfortable and know that their views and opinions are valued. They also begin to learn about the crucial role that the life sciences play in the continuous improvement of our beloved National Health Service.
It's a win-win situation.
Watch a short video of Keith Wilson explaining the value that patients can bring to clinical trial design when working together with the life sciences industry and describing how important the NIHR's role, as an independent intermediary, is when engaging with NHS patients.