Patient and public involvement in research

There are many reasons why people may find it difficult or challenging to get involved in health research. These may include personal difficulties (physical and/or emotional), organisational barriers (such as timing and location of meetings), language barriers, and the way researchers think or act sometimes. Solutions to some of these problems are explored in ‘Factors which make it easier to get involved’.

Finding out about opportunities

An important issue is raising awareness of health research and making sure that learning about involvement opportunities isn’t just a matter of chance or accident, as it often seems to be. (See also ‘Path to involvement – how did people find out about it?’ and ‘Raising awareness of opportunities for involvement and finding new volunteers’). For example, Francesco wanted to see opportunities being advertised to recruit a more diverse range of people (see also ‘Representing a range of views and experiences: diversity’).

On the other hand, more formal recruitment processes could be a barrier to some people. Beryl was put off applying for something because ‘you had to fill in this really complicated CV and get references and I thought, “Well, I don’t know. I’m doing this all voluntary”, so I didn’t bother.’
Once people are involved, early experiences can be daunting. Roger A said it could be off-putting to some people but he saw it as a challenge; he said, ‘Perhaps I’m a congenital anarchist, I don’t know.’ But challenging is not always easy. As Derek pointed out, ‘If you’re troublesome, the doors can easily close.’ Training, support and feedback

There was general agreement that it was unreasonable to get people along to a meeting or invite them to review or comment on a document without any training in how to do it, or at least clear guidance about what was expected (see also ‘What activities and tasks are involved’). Kath thought that lack of clear guidance also created problems for researchers. Kath said, ‘If people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what is wanted from people and what they can usefully contribute, and then they tend to fall back on what they always say.’ Jennifer, Catherine and Helen all commented on how demotivating it can be not to get feedback on what you have contributed and whether it’s been useful. Jargon and feeling excluded

A common problem when people first start getting involved is the use of technical language and jargon, acronyms and abbreviations (shortened versions of organisations names, drug names or even surgical procedures). Sometimes this is to be expected; as Charles said, ‘You have to accept that a lot of this jargon is shorthand and if we're going to have a discussion on a research proposal and not die of malnutrition, we need some kind of shorthand.’ But people complained that a lack of explanation of terms used could leave them feeling left out of the discussion; providing a ‘jargon buster’ glossary and banning the use of acronyms in meetings can help. As Andrew suggests, this sense of isolation can be made worse if you are the only lay person present in a meeting, or if the meeting is badly chaired so people don’t get a chance to speak or ask questions. Trying to take part remotely (by phone or in writing) can be even more isolating, even if for some people it’s physically more convenient. Andrew commented that if allowing people to feel ‘isolated and threatened’ was ‘a sure way of losing people’. Common problems with telephone conferences included background noise, technology problems, being unable to follow the conversation and finding it hard to contribute. Good chairing is essential to overcome some of these problems. Of course they will affect anyone joining by telephone, including other researchers, but they may feel more confident to chip in. Living with illness and caring responsibilities

The nature of health research is that many of the people who want to get involved may have continuing health problems or caring responsibilities which affect what they are able to do. Talking about research into serious illness can also stir up strong emotions. Elsewhere we explore in more detail some of the personal costs of involvement. The need for preparation and support for dealing with any emotional situations which may arise is discussed in ‘Training and learning’, though many people won’t find this a problem. Relationship with researchers and practical organisational issues

Many people had developed strong partnerships with researchers and really enjoyed the relationship. They felt valued and listened to, and loved hearing about the latest research. However, if involvement is done badly, there is a risk that people will be put off and give up. Kath encouraged researchers to be more thoughtful about the needs of the people they ask to get involved, and to ask for feedback on what their experience has been. Marney said it was frustrating, irritating and rude when people didn’t acknowledge her input. In ‘The costs of being involved and payment’ we look at what people said about their financial needs, but researchers also need to think about other organisational issues such as how travel is arranged; timing and location of meetings; accessible venues; catering; timing of deadlines for comments on documents; how and when to get documents to people (by post, by email); making sure people don’t have to wait a long time for expenses to be paid back. (See also ‘Representing a range of views and experiences: diversity’). Having the support of an effective involvement coordinator can be a real help, and it was often pointed out that organisations need to set aside a proper budget, so they can fund involvement early on, before a study has been funded. Occasionally people felt researchers’ behaviour was not just thoughtless but actively hostile or dismissive, or arrogant. Dave G suspected some researchers were more hostile than they felt able to say; ‘Let's face it, I mean, who's going to put their hand up and say, "We don't want patients"? You know, they're not going to do that, are they?’ Feeling that researchers saw involvement as a tick-box exercise they didn’t really believe in was frustrating and at times upsetting. Most people felt this was becoming less of a problem over time (see ‘Changing attitudes to involvement over the years’), but there was also some worry that pressure from funding organisations could be making the situation worse. As Andrew said, when researchers fill in a grant application form, ‘You've got to tick the box because you won't get the money at all if you don't… And that's the real worry because then my experience has been that researchers are rushing around finding, retrospectively, some engagement with patients, and that's not terribly helpful.’

There were mixed views on whether the younger generation of researchers or more senior investigators understood involvement better; either way, people felt the attitude of individual researchers was crucial in promoting or resisting involvement. Dave G suspected some patients had been less supportive and encouraging towards academic partners than he had, and were ‘frightened of putting the wrong foot forward.’ Marney added that people might be reluctant to say anything critical while they or a family member were still having treatment. However, many people suggested the problems were often unintentional and that researchers just didn’t really know how to involve people effectively or were even afraid to try it. This prompted some people to suggest they might need training. People could sympathise with how difficult it might be for researchers. A particular concern was that involvement was more likely to make a real difference earlier in the process, but often it was left far too late. The National Institute for Health Research can provide support for earlier involvement through regional Research Design Service teams. Researchers may find it harder to see how or why they should involve people in some projects more than others, particularly those where the research is quite technical or where the focus is not on illnesses or specific conditions. Beryl commented, for example, that it would be difficult to see how some laboratory-based research would lend itself to involvement. Some studies are largely about economic analysis, or secondary analysis of existing datasets (where data has already been collected and then it gets re-analysed for another purpose). Studies about public health (where the focus is on whole populations and interventions rather than individual patients, such as road safety or healthy eating) can also be more challenging. But people argued that there should still be a focus on real people and how they might benefit from the research, however technical. Charles felt that ‘there would be a role for PPI actually in every possible field’. Roger B talked about illness prevention research as a place where general members of the public could usefully be involved: ‘You've got to have people who may one day be affected by whatever – this disease, or that disease, or that group of diseases – if you're going to reach out to that same group of people with a message which is about prevention’.

Asking the right questions

As Derek noted above, sometimes difficulties came from patients’ own expectations or behaviour, and several people had examples of times where lay people came along with their own agenda, which could be disruptive – ‘hobby horse riding’, as Kath called it. Of course researchers may also come with their own agenda, and sometimes challenging researchers’ assumptions is exactly what’s needed; whether this is interpreted as disruptive or appropriate may depend on your perspective. Again, Derek argued training could help direct people’s energy, ‘but it's not about training them in a sense of training them to be an awkward squad, but actually training to ask fundamental questions’.

Last reviewed July 2017.