These notes have been written in response to requests by researchers and are intended as quick reference guides to resources and sources of help, both internal and external.
Please note that patient and public involvement in research does not need ethical approval. Patients and the public involved in this way are acting as specialist advisers, not as research participants. NIHR INVOLVE (now replaced by the Centre for Engagement and Dissemination) and the Health Research Authority (formerly the National Research Ethics Service) have issued a joint statement to confirm that ethical approval is not required, available here: Patient and public involvement in research and research ethics committee review.
In addition, the Health Research Authority has a decision tool to help you check: Is my study research?
► 1. What’s the difference between engagement, involvement and participation?
NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.
Engagement is about researchers raising awareness of research, sharing knowledge or engaging and creating a dialogue with the public; and participation is when patients or members of the public are recruited as participants (or volunteers) in research.
► 2. When can I do patient and public involvement in the research cycle?
Patient and public involvement (PPI) can be part of the research cycle at any stage. The Research Design Service has produced a handbook for researchers which shows how to incorporate PPI at the following stages:
- Identifying and prioritising research
- Study design
- Development of the grant proposal
- Undertaking/managing research
- Analysing and interpreting data
- Dissemination of findings
- Implementation of findings
- Monitoring and evaluation
The handbook, entitled “Patient and public involvement in health and social care research”, can be downloaded here: Research Design Service PPI Handbook. There are also links to other resources and information about the services that the RDS can provide.
It’s important to do PPI at the stages in your project where it is appropriate to do so and will be genuinely meaningful. Think about what you want your PPI to achieve and hence at what stage(s) it will be most useful. You may make these decisions in partnership with patients and the public.
► 3. How do I find people for patient and public involvement?
At whatever stage you want people to take part, you need to find them. You can do this by advertising who you need for your study in the ‘Post an opportunity’ section on this website – this will reach a pool of people in the Thames Valley who have registered their interest in PPI activities. You can also use NIHR’s People in Research website at peopleinresearch.org This is nationwide.
There are also condition-specific sites such as:
These are specific to dementia but there are others, often linked to condition-specific charities. The Association of Medical Research Charities (amrc.org.uk ) may be able to help you.
If you are looking for young people to get involved, you may find Generation R helpful. It is a UK network of young people’s advisory groups funded by the NIHR.
► 4. How do I know what research matters to patients?
Involving patients in identifying and prioritising research will help you to find out what matters most to them. The James Lind Alliance (JLA) offers a method for setting research priorities involving patients, carers and health and social care professionals in a given condition or health area. These Priority Setting Partnerships (PSPs) are not the only way that research priorities can be set, but they follow a clear process (set out in the JLA guidebook), are co-ordinated by NETSCC (the NIHR Evaluation, Trials and Studies Co-ordinating Centre) and are guided by an independent JLA Adviser.
PSPs take about a year to 18 months to carry out, cost approximately £20-35k (but this is very variable depending on support available) and produce a “Top 10” set of research questions that matter most to patients/carers and clinicians.
If a PSP has already been conducted in an area of interest to you, you can address the resulting research priorities even if you were not involved in the partnership.
More information about the JLA, previous/current PSPs and “top 10s”, some of which have been supported by Oxford BRC, is available here: jla.nihr.ac.uk
► 5. What guidance is available to help me do patient and public involvement?
The BRC offers a range of resources for researchers on this website. You can also contact the Public and Community Involvement Engagement and Participation Lead, Rachel Taylor (rachel.taylor@ouh.nhs.uk), or the Patient and Public Involvement Manager, Polly Kerr (polly.kerr@phc.ox.ac.uk), for advice and support.
Two key organisations that also offer help and guidance are the Research Design Service (RDS) and NIHR Centre for Engagement and Dissemination.
RDS South Central covers Oxford and has resources to help you with PPI, as well as other aspects of your application, such as statistics and health economics.
NIHR has relaunched some resources which were originally created by INVOLVE (now replaced by the Centre for Engagement and Dissemination). These can now be found on the Learning for Involvement website. More information about how NIHR is supporting patient and public involvement and a full range of resources can be found here.
One frequently asked question is how to handle difficult situations in meetings where patients and the public are involved. Some of the INVOLVE guidance may help, but there are skills to chairing or facilitating all meetings. It may be a good investment to get an external facilitator if there are likely to be especially challenging issues raised or if you don’t yet feel confident in your facilitation skills.
You may also find these journals helpful:
► 6. How and what do I pay patients who get involved?
We have a payment policy for patient involvement that we encourage researchers to follow. This was developed in collaboration with other organisations in the region including the Oxford Health BRC, Oxford Academic Health Science Network and Oxford and Thames Valley Applied Research Collaboration. It sets out rates of pay and expenses and is based on similar national guidelines. You can download it here:
Policy on reimbursement of expenses and involvement payments (pdf)
Payment for time is separate from payment for expenses such as travel or for carers to support the person getting involved. Expenses should always be reimbursed as no-one should be out of pocket from patient and public involvement (PPI) activities or prevented from getting involved because they cannot afford the associated costs. Payment for time should be offered wherever possible; however, many people choose not to accept as they see their PPI role as something they wish to do on a voluntary basis or do not want to complicate e.g. tax affairs with additional income. Again, the basic principle is that financial constraints should not prevent people from getting involved.
One of the issues often raised by researchers wanting to do PPI at an early stage is the cost of working with patients. RDS South Central have limited resources to help with reimbursement for PPI expenses and time.
There is detailed guidance from NIHR about paying patients and members of the public here.
It’s important to be aware that there may be implications on accepting payments for people who receive state benefits. A free Benefits Advice Service has been set up that can offer individual advice to people on benefits who are involved with NIHR projects. To access this service, please email: ced@nihr.ac.uk
► 7. How do I write information for patients?
There is lots of guidance about writing for a lay audience. Try to write as simply as you can and get a non-expert (or a few) to read your work. The language that you use on a daily basis in a research context may well not be understandable to non-experts so think carefully about how to phrase complex terms, and avoid jargon and acronyms unless you spell them out and/or explain them.
Clear information is needed in a number of different places e.g. lay summaries in grant applications and for ethical approvals, clinical trial summaries (at the start and the end of a trial) and patient information sheets. You can find guidance on writing for a lay audience here (see no. 5).
If you would like help with writing for a lay audience or finding someone to review your documents, please contact the BRC’s Public and Community Involvement, Engagement and Participation Lead, rachel.taylor@ouh.nhs.uk or the Patient and Public Involvement Manager, polly.kerr@phc.ox.ac.uk
► 8. What do patients and researchers think about patient and public involvement?
Health Talk provides free, reliable information about health issues, by sharing people’s real-life experiences, mainly through short videos. People share their stories about conditions including cancer, autism, pregnancy and depression. There is also a section of on patient and public involvement in research; interviews have also been conducted with researchers on their experiences of patient and public involvement.