Researchers' experiences of patient & public involvement

Reasons for involving patients and the public in research

In ‘Definition, purpose and values of patient and public involvement’ we described overarching principles of involvement. In this summary we look in more detail at the many different reasons why researchers were involving patients and the public in their work.

At its most basic level this could be because they knew they had to. National policy has increasingly encouraged involvement in research, and the NHS National Institute for Health Research, and some medical research charities and other funders, now require research grant applicants to explain how they have involved people in preparing the application and how they will involve people during the course of the study (or if not, why not). Ethics committees and grant funding panels commonly include lay reviewers – although as Felix commented, ‘I've heard from people that sit on these bodies they don’t have a single proposal that has been turned down based on the quality of the public involvement itself.’ Bernadette also commented that it’s mainly her scientific peers on funding panels that she needs to convince rather than lay representatives. As a basic science researcher it is harder to see where involvement fits.
But researchers we talked to described many other practical and philosophical reasons for involvement, including generating new research ideas; improved participant information; designing better interventions; making research easier and more acceptable for people taking part; more patient-centred data collection and outcomes; enriching data analysis; supporting dissemination of results; and avoiding wasteful or pointless research. (See also ‘Definition, purpose and values of patient and public involvement’ and ‘Researchers’ examples of the value and impact of involvement’).
Sometimes the reasons were less focused on a specific goal and more just about humanising the research – reminding researchers what matters, and helping them think differently, or ‘keeping their feet on the ground’ as Jim put it. Sergio felt this was especially important for young researchers with little experience of patient contact. For Kristin and others, the main reason was to change the balance of power. However, as Suzanne (and Bernadette above) pointed out, the setting can be important, and it may be more difficult to see how involvement can benefit basic lab science. Several researchers pointed out that you should be clear why you are involving people and what your expectations are (see also ‘Definition, purpose and values of patient and public involvement’ and ‘Measuring impact of involvement’).
Researchers might also have quite personal reasons for wanting to involve people. These included feeling that it was rewarding, enjoyable and made their work more meaningful and valuable (see also ‘Feelings about involvement and emotional impact’), but also that it was helping them acquire valuable skills for their academic career. Fiona said it was great fun and ’a very rich part of my life’, Sergio found it ‘elating’, and Marian described it as ‘positive reinforcement’. Valerie commented that some of her health economics and statistics colleagues love to come to her PPI group because they ‘really enjoy the contact time’. Alice and Alison described how involving people gave them confidence and reassurance they were going in the right direction.
While many positive reasons for involving people were identified, some researchers were critical of the assumption that it was always a good thing, and described pressure to do it because it was ‘trendy’, ‘fashionable’ and ‘politically correct’. Whilst it may be true that researchers are usually in a more powerful position than patients and the public, researchers can also feel disempowered and vulnerable. A number of our participants were very worried about preserving their anonymity and not being seen to say anything openly critical; a few withdrew their interview from the study, and of course others with more sceptical views may have chosen not to take part at all. 

Anne reflected: ‘PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it… Why are we not critiquing the bad things about it?’

One person said he didn’t need patients to tell him what could be improved, and ‘the only reason I actually have a patient group for those sort of issues is that they are often a better political  weapon than me going to hospital management and saying these things’.
In addition to researchers’ own reasons for wanting to involve people, several mentioned reasons why individual patients or members of the public might want to get involved, including enjoyment and satisfaction; learning more about their condition; aiding their recovery; gaining new skills and confidence and improving their employment prospects; and wanting to improve care for people in future. Felix suggested that work they had done locally showed that the benefits of involvement were more about its impact on the individuals involved than on the research. Valerie commented that knowing how individuals benefited from getting involved was something ‘profound and moving’ to her. These are topics are explored in more detail in our Healthtalk website on individuals' - Experiences of patient and public involvement

See also ‘Definition, purpose and values of patient and public involvement’, ‘Researchers’ examples of value and impact of involvement’ and ‘Feelings about involvement and emotional impact’.

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