This page is adapted from the UKCRC Centre for Diet and Activity Research guide to PPI, with thanks to Oliver Francis.
2. Key Resources
3. Finding people to be involved
4. Getting the best from your lay advisers
5. PPI and young people
6. Evidence of impact
7. Writing in plain english
8. Blogs and opinion
What is PPI?
Public involvement in research is when the research is carried out with or by members of the public rather than ‘to’, ‘about’, or ‘for’ them. PPI can be used throughout the life of the project from concept to dissemination:
- involvement in identifying research priorities
- suggesting ideas for specific research projects
- as joint grant holders or co-applicants on a research project – or to review funding applications
- as members of a project advisory or steering group
- commenting and developing patient information leaflets or other research materials
- to suggest recruitment methods and avenues (and advise on strategy if recruitment stalls)
- undertaking interviews with research participants or assisting in focus groups
- help plan dissemination of research to lay audience
- co-author journal articles and lay media
- present at conferences
PPI and secondary data science
PPI can still have a role to play when research does not involve new data collection. Setting research priorities and questions, and planning dissemination activities should still be amenable to involving lay members.
What PPI is not
PPI is distinct from engagement where we raise awareness of research, share knowledge and create a dialogue with the public. It is also not the same as research participation, when members of the public are recruited to take part in a study. Sometimes this line can be blurred, for example when running a focus group with participants about how an intervention might be carried out. In its pure form, however, members of the public would advise the research study without being study participants. Public involvement, engagement and participation are of course often linked and can complement each other.
2. Key resources
There are a number of local experts who can provide support for researchers at Cambridge who are setting up PPI activities. For an overview with practical advice drawing on Cambridge experience, see Public engagement and PPI Feb 2016 for slides from a February 2016 seminar organised by Lucy Lloyd and Charlotte Carroll. Features Nichola Dalziell, EPIC-Norfolk and Joann Leeding, BRC and includes the perspective of Miss Kathryn Lawrence, a seasoned lay adviser to Cambridge researchers.
- Introductions to the topic briefing
- Notes for researchers on how to involve members of the public in research
- A resource centre with evidence on PPI impact and a database of research projects with active public involvement
- PPI cost calculator
Questions to consider with regard to PPI recruitment, data security, payment and PPI induction.
3. More ways to find people to be involved
The following sites and groups can also be used to find people to be involved in your research. You can also advertise through self-help groups, charities, in local libraries, online bulletin boards. Make sure people are fully briefed on your expectations and consider arranging training or helping people access training.
People in Research – www.peopleinresearch.org
This is the key NIHR gateway for people who want to be involved in research; and for researchers who want to recruit people and patients to advise or become involved in their research. Follow them on Twitter @People_Research
Healthwatch – national network to promote patient voice
Healthwatch England is the independent consumer champion for health and social care in England. Working with a network of 152 local Healthwatch, they ensure that the voices of consumers and those who use services reach the ears of the decision makers. Locally, we have two Healthwatch: one for Cambs and one for Peterborough. They are there for members of the public who wish to be involved in discussions and decisions about local health and social care services and may have connections with patient and public groups that you wish to contact.
RDS support in the East of England
The Research Design Service EoE has a dedicated patient and public involvement adviser and online information here.
Cambridge University Hospitals Patient and Public Involvement Panel
The National Institute for Health Research Cambridge Biomedical Research Centre (NIHR BRC) at Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge has over 800 research projects currently on-going and helps researchers to access patients and the public by running an ongoing panel. See more.
The Dementia and Neurodegenerative Diseases Research Network supports the development, set-up and delivery of clinical research in the NHS on the dementias and neurodegenerative diseases. DeNDRON offers help to researchers seeking public involvement as they plan their research. Check out DeNDRON’s PPI page.
4. Getting the best from your lay advisers
NIHR has some useful pages for members of the public who want to get involved in research, which may help you when briefing people or considering who you need: National Institute for Health Research and Policy Research Programme – Patient and Public Involvement
- Check the people you recruit are right for the role – you can talk to potential candidates to make sure they have the right interests, skills and motivation for being involved
- Define a clear role and expectations
- Check that they are capable of delivering what you need – and provide training if necessary.
- See what other skills they have which you may benefit from (e.g funding member, writer, economist)
- It can be hard for lay members to ‘parachute’ into research projects since they are not involved on a day to day basis. Keep them informed and ensure they feel part of the project: send updates and assign a member of the team to be a primary point of contact. You may want to brief them personally ahead of meetings to bring them up to speed and answer any questions that they may have.
- Don’t forget that you as a researcher get paid for your time – lay advisers give their time to your project and it is often appropriate that they should be recompensed. Budget appropriately for their involvement – see the guidance on reimbursements here. If necessary be creative, offer vouchers or other benefits. Check with your finance department to avoid pitfalls in payment and if volunteers are on benefits ensure they check through their benefits office that they won’t lose out if you pay them.
5. PPI and young people
A guide to actively involving young people in research www.invo.org.uk/posttypepublication/a-guide-to-actively-involving-young-people-in-research
6. Evidence of PPI impact
CLAHRC EAST OF ENGLAND PPI Theme
This research strand, led by UEA’s Dr Fiona Poland, aims to improve understanding of how PPI in research can enhance the relevance, quality of experience and impact of NHS research for patients. The proposed approach will evaluate the PPI contribution to CLAHRC research implementation; explore which models work best to improve patient experience in long term conditions services; and, explore Patient and Public Involvement in Systems Modelling and Simulation.
Public Involvement in Health Research – Sheffield University
A research programme on the topic of public involvement in health and social research, including a number of published papers on the impact of PPI www.shef.ac.uk/scharr/sections/ph/research/public_involvement
7. Writing in plain English.
Research funding applications frequently require a plain English summary. NIHR has developed guidance on producing a good plain English summary. Full details at www.invo.org.uk/makeitclear
8. More viewpoints
- Nuffield Trust resources on PPI (October 2015)
- Patient and Public Involvement (PPI) as a catalyst for research – tips for researchers
- Evaluation of public involvement in research: time for a major re-think?
Natalie Edelman and Duncan Barron (Dec 2015, Journal of Health Services Research & Policy)