Patient and public involvement in research

Skills and background for involvement

People who get involved in health research can come from all sorts of backgrounds and bring various skills and experience. Although they are often motivated by their own illness or caring for a family member, people with no particular illness experience can also be involved. Having first-hand experience of a particular condition can give researchers valuable insight into what it’s like to be a patient or a carer. But just bringing a general patient or carer perspective can also be valuable.

Catherine and Kath argued that it was possible to relate your own experience to that of people with other conditions, and sometimes it might be easier to get involved in a topic you did not feel so emotional about. Helena felt it was important for researchers to be clear why they wanted someone; she would not be able, for example to comment much on specific conditions other than her own, but she would bring general understanding of having a long term condition. Very recent or current experience can be important for some studies but several people made the point that it was important to feel strong enough (physically, mentally and emotionally) when you got involved.
Some people had working skills they thought were useful (for example committee work, chairing meetings, public speaking, reviewing documents, using computers) – though people also talked about acquiring these skills as a result of involvement. Some had worked in healthcare or in research of different kinds, a background which helped them understand some of the complicated language and organisational issues they faced. For Charles, the intellectual contact after retiring from a career as a research scientist was one of the main attractions and it felt like a good use of his skills. At the same time, they and others wanted to stress that a specific background was not essential. There are advantages to being able to take a complete ‘outsider’ perspective, to challenge researchers’ assumptions about what is understandable or acceptable. Rosie wondered how far people from a research background would be able to be critical and think from a patient’s perspective.
As Dave A and Charles suggest, there is a good case for having several people involved, rather than just relying on one person on a committee, so they can complement each other’s strengths. Dave X said, ‘Whatever skills you have, bring them.’ Rather than picking only people who already have work-related skills, research organisations should offer training and consider ways to involve people that don’t rely on expecting everyone to be good at committee work or reviewing long documents, even if this is tempting for researchers. (See also ‘Representing a range of views and experiences: being representative’).
People had different views on what skills, knowledge and experience were necessary for involvement. Marney felt it was important to select people carefully on the basis of their skills and motivation, asking them ‘What transferable skills are you bringing to this? What's your interest in it? Why have you felt motivated to approach this? What other relevant stuff have you done?’ She felt computer literacy was an essential skill, for example. Jennifer argued ‘definitely you’ve got to have some sort of scientific knowledge’. But Beryl said being asked for a CV had put her off applying for one position, and Catherine worried that making people submit a formal application might make it harder for some people to get selected; they might not be able to show many formal skills if they had been unable to work because of illness or caring. But that experience and a ‘normal common sense approach’ was precisely what they could bring to the table.  (See also ‘Path to involvement– how did people find out about it?’ and ‘Raising awareness of opportunities for involvement and finding new volunteers’). Maxine suggested there are ways for people to pick up a bit of useful scientific knowledge, and training can help.
Having a scientific background did not necessarily make it much easier. Helen got involved through being in a clinical trial for multiple sclerosis, but despite her science degree didn’t understand all of the patient information. She explained, ‘I have a background in biology, so I knew some of the words, and I knew how some of these bits and pieces worked. But even then, I mean I'm discovering huge whistling tundras of complete misunderstanding.’ That brought home to her how vital it was to have a non-medical perspective on information sheets for research participants.

Getting involved in actually doing research may be easier for people who have had some previous related experience. Maxine had experience as a librarian which helped her doing a ‘systematic review’* of all the research evidence on vitiligo in academic journals. Rosie had some previous experience in interviewing people but was given extra training. She felt that people with no previous background could be involved, if they got that extra training and support.
As people gain more experience and expertise, they may feel they start to lose the all-important lay perspective, as Helen describes. On the other hand Carolyn argued it was good to keep very experienced people involved too, as well as people with a fresh perspective. This is explored further in ‘Long term involvement and expertise’.
* A systematic review is a compilation of all the high quality research on a particular topic. It may include a ‘meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.

Last reviewed July 2017.
Last updated March 2016.

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