Research Design Service: East Midlands
National Institute for Health Research
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Patient/public involvement: Should money come into it?

  Created on Tuesday, 13 Jun 2017. Posted in Public Involvement

Across the UK health and care sector, many thousands of people are involved as patient/public representatives. As committee members, research participants, focus group contributors and survey respondents, they offer huge amounts of time and "expertise by experience" - nearly always as volunteers.

If patient and public input to the sector's learning and development has a value, should the value be recognised? Should our volunteer contributors become paid contributors? Canada's Change Foundation has considered the issue. They recognise that payment for patient and public involvement (PPI) could undermine the ethos of volunteerism, or could engender a sense that opinions are being bought, rather than freely sought.  

But they also consider the downside of volunteerism. This includes the possibility that expecting people to participate without payment could mean that low income patients are excluded from deliberation and debate. This matters in the context of health inequalities, where the most vulnerable in society are already relatively voiceless.  

The authors state that they are "neither for nor against paying. Our concern is to work within the principles of fair, equitable and barrier-free public engagement". So they decide the payment issue on a case-by-case basis.

To help them do so, they have developed an easy-to-use decision tool. This sets the question of payments for PPI against parameters that guide decision makers towards a rational outcome. By using the tool, you may or may not end up paying PPI participants.  But at least you'll be able to explain how you have come to your decision