Researchers' experiences of patient & public involvement

Practical advice for involvement

NIHR INVOLVE provides a series of briefings for researchers with practical advice and help, as do many local Research Design Services. INVOLVE has distilled the following key practical messages:
  • involve people as early as possible
  • be clear with the people you want to involve
  • be accessible
  • resource public involvement in research
  • offer training and support
  • clarify organisational responsibilities
  • document and record public involvement in your research
Researchers we talked to offered a wealth of practical advice from their experience, which features in many of the topics on this site (for example ‘Finding people to involve in research’; ‘Payment, expenses and funding issues in patient and public involvement’; ‘Training needs for involvement’; ‘Learning from experience of involving patients and public’; ‘Organisational support and leadership for patient and public involvement’; ‘Measuring the impact of involvement’; and ‘Messages to researchers/colleagues about patient and public involvement’). Below we draw together a few overarching comments. 

One area that researchers felt was important was being flexible about where and how to involve people, and not being bound by traditional committee structures. People who would like to get involved may not find it easy to travel or to access university buildings, perhaps because of their own health issues, or caring responsibilities, or financial difficulties. They may also find the university environment an intimidating space. Although face to face meetings might be preferable in many ways, Suzanne pointed out that some people may prefer to contribute by Skype or Facebook (for example people with cystic fibrosis, worried about exposure to infection). Alternatively meeting people at home or in existing community settings might be an option. Where possible, some researchers recommended booking and paying for travel tickets and accommodation for people in advance, or reimbursing people in cash.
As well as thinking about the venue for meetings and access, a common theme was getting the atmosphere right on the day. Good catering was one important aspect of this – both in terms of thinking carefully about dietary needs and preferences, but also creating a welcoming and hospitable environment, to foster the building of relationships. Having people on site may involve other practical issues such as safeguarding (with children and young people) as Hayley described, and there was enthusiasm for having a dedicated involvement coordinator post to help run things smoothly. Felix also stressed the importance of building plenty of time into grant proposals, not just so the researchers have time to plan involvement but also to allow time for people to read documents in advance, and time to explain and communicate. Working to build long term relationships might extend to organising explicitly social events.
The importance of skilled and sensitive chairing was frequently mentioned, and ensuring people are prepared and supported to take part if formal meetings are the main vehicle for involvement. One of Catherine’s tips was to have name cards in front of all participants at every meeting, and she was considering getting the chair to have a pre-meeting with PPI advisers.
Being clear with people about their expected role and ensuring they get feedback on how they have contributed were also common themes.
The question of whether to use some form of contractual arrangement with people was discussed, and most researchers were cautious about it. Pam commented, ‘it can be an obstacle for members of the public that don't understand or might even be frightened by some of those very bureaucratic formal procedures.’ She was more concerned about cutting through bureaucracy and reducing barriers to involvement, which included making sure people were reimbursed promptly.
The whole issue of building the evidence base for patient and public involvement is considered in ‘Measuring the impact of involvement’. In practical terms, researchers advised trying to keep a record as they went of what had been done and what had happened as a result – and using this to help with regular feedback to the people who have been involved.
In our study of the experiences of patients and the public who get involved in research, there are many more practical ideas and advice for improving involvement. See, for example:
Patient and public involvement – Factors which make it easier to get involved
Patient and public involvement – Difficulties and barriers to involvement.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.

Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email