Diversity within Patient and Public Involvement groups

Written by Kelvin Pitman, an experienced patient representative in cardiovascular care.

I wish we could celebrate more diversity within PPI groups.

A couple of years go I was invited to join a one-off patient panel discussing certain aspects of how our individual DNA sequences can be used to tailor the drugs and treatment we might receive. Very few of us have our DNA sequenced as yet, which got me thinking that there is obvious and readily available information about us that is often ignored when developing the best treatments and drugs. I am thinking about information as such ethnicity, gender, age, socio/economic background etc.

Of the several patient panels that I have been involved with, the vast majority have been made up of mainly older white Caucasians, thankfully with a good gender mix. I know researchers can also sometimes struggle to achieve a balanced representation of trial participants. COVID has highlighted the variation in susceptibility between various groups of people, hence the importance of getting a good balance in both PPI and trial participants. Obviously older people, often retired, have more time to get involved hence the over representation of this group. So what can be done to engage others?

  • To start I think it essential to understand what motivates people to get involved in PPI and just as important, the barriers to doing so. A bit of a “Catch 22” but this needs to especially include the under represented groups.
  • Are there any lessons to be learnt from the “New Normal” brought about by COVID? As desirable as it is get together in face to face meetings, we have all got accustomed to online meetings; does this allow younger people or those with less time to become involved?
  • Sometimes the application process to join a patient group can be quite daunting, starting with a challenging role specification, then a lengthy application form followed by interviews. Perhaps this is sometimes necessary for more advanced patient roles, but could be a lot simpler in other cases.
  • Could ethnic minority groups be reached via their community leaders in some cases?

These are just some thoughts that might catalyse further ideas and perhaps the coming together of various interested parties, so as to map out a way forward.