Involving patients in research

I keep hearing about Patient and Public Involvement (PPI), but what is it?

PPI group 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.

What can PPI do for a clinical trial?

For a researcher, the thought of introducing a member of the public – also known as a Lay Representative – to a concept or proposal in a field that they don’t work in, might seem strange at first. But the effect of what PPI can do for a study is invaluable.

Lay representatives 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.