Involving patients in research

Patient and Public involvement (PPI) is the involvement of the public within the NHS. The NHS Constitution states that members of the public have the right to be informed of and have access to clinical research studies. 99% of NHS organisations conduct clinical research and the individuals that work within those Trusts are obliged to ensure that this occurs. PPI also known as Lay Representative can provide researchers with vital life experience perspectives. If they or a member of their family have a certain condition which requires specific interventional treatment, they will be able to advise what will be off-putting to patients and therefore, what may affect recruitment to a trial.

They can also review your documents, such as the Plain English Summary or Patient Information Sheet for example. If they have knowledge of a condition but still find the content difficult to digest, then others will too.

Patient Advisory Groups (PAGs) are also a great resource for a researcher, as they will have a practical perspective of what clinical need or gaps currently exist for the local population.

A Patient Research Ambassador (PRA) is someone who promotes health research from a patient point of view. As a PRA you can help to ensure that people using local NHS care have the best opportunities and choices about taking part in research studies.

John Whelpton is one of our Patient Research Ambassadors and he explains here what this involves.

My name is John Whelpton in 2009 I was diagnosed with Bowel Cancer. Fortunately I was caught at an early stage, so surgery was successful, and I was returned to “normal” after 12 months, having had a temporary stoma and attendant hernia. So, feeling that I am one of the lucky ones, I give as much of my time as I can as a Patient Representative on various groups, hopefully to make a difference for those not as fortunate as myself. I work closely with Bowel Cancer UK, who lead the research into the disease, and know how important this work is in trying to get on top. We need to encourage as many patients as possible to partake in trials, when invited, and I hope to be able to influence that.

Without research we would not see as many improvements in techniques, medicines and treatments – all vital in the fight against disease. We also learn and share new ways to improve patient outcomes.

If you are interested in contributing as PRA or for more information on how you can support our research activity, please contact Beverley Taylor by calling 01924 543175 or emailing beverley.taylor14@nhs.net.