Considering who is a 'Lay Patient'

Problem

It has become common to involve patients and carers in healthcare research, and this is often required by research funders, but the ‘lay’ representatives who become involved often may not represent lay patients. As a patient managing my own long-term health conditions, now with several years of Patient Public Involvement (PPI) experience, I have come across many PPI representatives whom I felt were less 'lay' than others. There included retired clinicians and allied health professionals, former managers and administrators in the NHS, and others who had simply been acting as PPI representatives for a very long time, in the last case, often individuals with a particular axe to grind. I have also worked with people I would call ‘green’ lay patients. I wanted to clarify who is a lay patient in order to help researchers select appropriately for PPI.

Approach

During the course of my own PPI experiences, I have thought about and discussed with many other people the importance of recruiting lay patients for healthcare research and about who could and could not be described as a lay patient. I have observed and debated widely the differences between ‘green’ lay patients and those less green and those whom I personally would not define as lay because of their healthcare backgrounds. I wanted to find a way to clarify who could be considered a lay patient.

Findings

I have conceptualised the different types of PPI people I have observed as being represented by a slice of Battenberg cake. This divides people into four categories, two belonging to those who have had medical training or have ever worked in any profession allied to medicine, and two belonging to those who have not. Each of these is divided into people who have not received any major medical treatment and who do not live with any long-term health conditions, and those who have undergone major treatment or who have a long-term health condition. A lay patient could be defined as a person who is not medically trained nor has worked in any profession allied to medicine.

Consequences

My hope is that others will be able to use my Battenberg cake framework when considering PPI recruitment in order truly to make research more relevant to lay patients.