Patient and public involvement in research

There can be many reasons why people get involved in research. In this summary we look mainly at what might be called ‘altruistic’ reasons - wanting to help other people, improve research and make care better for future generations. Elsewhere we look at more personal reasons such as personal satisfaction and learning new skills). But in practice most people are motivated by a mixture of reasons which may change over time. 

Like Kath, people we talked to commonly used terms like ‘giving something back’ after they had received publicly funded healthcare; as Richard put it, ‘I had this moral imperative to put something back because I was still alive after I'd been ill.’ Other common phrases included ‘making a difference’, ‘helping’, ‘being socially useful’, ‘contributing’, ‘doing some good’, and ‘doing something valuable’. Several people specifically used the word altruism to describe their motivation – Andrew, for example, felt there was ‘a huge well of enthusiastic altruism’ and researchers should not worry about asking people to get involved. Of course it is possible that people being interviewed may feel they ought to stress such altruistic motivations, but they are a strong and consistent theme among people we talked to. Behind these altruistic motivations lie a range of values and feelings. These include empathy and understanding for other patients, a sense of obligation to their fellow citizens and wider society, and a responsibility to use their time and skills to help others (for example in retirement). David Z also mentioned the role of religion in his voluntary work, which had included VSO (Voluntary Services Overseas). Others also enjoyed wider voluntary activities, including Ben who was a Beaver Scout leader, Alan and Rosie who had volunteered with support groups, and Stephen who was fund-raising for the Teenage Cancer Trust. Ben originally joined a clinical study as a healthy research participant as ‘a favour to a friend’, but getting involved more widely had made him see things differently.  Many of the people we talked to also had a working background in teaching, healthcare and other public services, or came from a family of doctors or nurses, like Ben and Richard (who said, ‘My mum was a nurse, so it was drummed into me at an early age that health research generally is a good thing’). But equally others we talked to came from very different backgrounds: Tom was an engineer, Peter was a technology business consultant and Catherine a self-employed telesales consultant, and they all became involved following their personal or family illness experiences. 

Wanting to make good use of existing experience and knowledge – whether acquired through work or from experience as a patient or carer – was a common motivation. Sometimes people felt they had a responsibility to use their voice – sometimes literally - to speak for others. David Z felt that in his work on stroke research he could be ‘a voice for those who would otherwise be voiceless’. Helping others by improving research is a long-term project; it may make a difference to people many years down the line, people you will never meet. Anne talked of ‘the knowledge and the feeling that you're going to help somebody somewhere, maybe in the future, but at least you're putting, as a friend tells me, a brick in the wall.’ The idea of putting a brick in the wall suggests how an individual plays only a small part in a collective contribution. The issue of whether people should be paid for their time involved in research is discussed in more detail in ‘The costs of being involved and payment’. For some people being paid for involvement seemed inconsistent with being altruistic and wanting to help others. Catherine said, ‘I'm doing this to help and I think being able to influence is the best payment.’ Tom said he was ‘grateful that I was still alive in the first instance and totally grateful as well that I was still able to get involved in something like cancer research.’ Anthony described involvement as ‘an opportunity, a privilege’. Some were surprised to discover that payment was offered.

However, some others felt payment was important and didn’t make them any less altruistic. They were concerned people shouldn’t be made to feel guilty for expecting payment.  As Janice suggests, there is no simple difference between doing something for personal satisfaction and doing it to help others; knowing you are doing something that makes a difference can be a huge source of pleasure and reward in itself.  See also:
‘Reasons for getting involved – personal benefit’
‘Reasons for staying involved and wider benefits’
‘The costs of being involved and payment’
‘Messages to other people who are involved or thinking about it’

Last reviewed July 2017.