“What a waste of the knowledge and experiences that are out there if patients are not involved in research”
Doreen Edgar, Heart Failure Patient
Involving patients and members of the public in research can lead to better research, clearer outcomes, and faster uptake of new evidence.
The National Institute for Health Research (NIHR) encourages patients and the public to be actively involved in all NIHR-funded health and social care research, to:
- Identify the important questions that health and social care research needs to answer
- Give their views on research proposals alongside clinicians, methodologists, scientists, and public health and other professionals
- Help assess proposals for funding
- Take part in clinical trials and other health and social care research studies, not just as subjects but as active partners in the research process
- Publicise the results
As part of NIHR Clinical Research Network (CRN), County Durham and Tees Valley Comprehensive Local Research Network (CDTV CLRN) is committed to raising awareness of patient and public involvement (PPI) and supporting researchers to actively involve patients, carers and members of the public in CDTV CLRN portfolio studies.
CDTV CLRN is also working in partnership with NIHR Research Design Service North East (RDS NE) to raise awareness of PPI and promote the involvement of patients and members of the public from the development of a research idea, proposal and funding application through to their involvement in the conduct and management of studies, once the research is funded. More information about RDS NE is available on its website.
CDTV CLRN runs two PPI workshops for researchers:
“Patient and Public Involvement: An introduction” provides a general overview of patient and public involvement in clinical research.
“Patient and Public Involvement: Development Workshop” helps researchers develop their understanding of patient and public involvement, and to think about how to involve patients and members of the public in their own research.
The following information gives an overview of PPI, and aims to answer some of the queries you may have. However, please note that this information is for guidance only, and is not intended to form comprehensive advice.
If you have any questions about PPI, or require any further information, please contact Andrew Robinson, our Patient and Public Involvement Officer.
What is active patient and public involvement?
Patient and public involvement may mean different things to different people, and as such there isn’t a universally accepted model or definition. As part of the National Institute for Health Research, CDTV CLRN advocates the model of active involvement developed by INVOLVE.
INVOLVE is the national advisory group funded by NIHR to promote and support the development of greater patient and public involvement in NHS, public health and social care research.
Active involvement is about actively working in partnership with patients and members of the public. Involvement shouldn’t be a passive, prescriptive process and it isn’t about people being the subjects of research. Active involvement is about research that is done with or by patients and members of the public, rather than to or for them.
What forms can active involvement take?
The spectrum of active involvement is illustrated below:
© INVOLVE See Buckland S et al (2007) Public Information Pack
How to get actively involved in NHS, public health & social care research (Booklet 1) INVOLVE
Consultation is where researchers ask patients and members of the public for their views and use feedback in informing decision making. It can be a one off or repeat process.
Collaboration is an active, on-going partnership between researcher and patients and members of the public.
User control is where research is actively controlled and managed by patients and members of the public. This may involve parts of the research, or the entire research process. This type of involvement can often empower marginalised or disadvantaged groups and can be a good way of accessing communities where there may be cultural barriers or a lack of trust.
Which level of involvement is best?
This really depends on your research and what level of involvement will prove most appropriate to it. Think about your research question, who you want to involve and the best way to involve them. You could use different levels of involvement for different stages of the research process, depending what will facilitate the most effective involvement of the people you want to involve.
Who are patients and members of the public?
This may seem like a straight forward question with a relatively obvious answer. However, who you involve is something that you need to think about carefully.
If you’re a clinician, for example, you may automatically think about involving your patients, their families and carers in your research. But have you thought about involving people from the wider local community?
There may be local community support groups, charities and voluntary sector organisations that are relevant to your area of research and that support a large number of people with the illness or condition to which your research relates.
Building links and relationships with such groups and organisations can not only put you in touch with people to involve in your research, but can also help in areas such as recruitment to your study and dissemination of results later on.
Why should I involve patients and members of the public?
Quite simply, active patient and public involvement can lead to better research.
You may miss out on invaluable insights, perspectives and skills if you don’t involve people. You can’t really know what’s important to people living with a certain illness or condition, for example, unless you talk to people that live with that illness or condition every day. As discussed earlier, by involving patients and members of the public in your research you’re making sure your research addresses an issue that is relevant and important to the people it aims to benefit, that it focuses on their needs and has clearly defined outcomes that are likely to be developed into improved treatments and services that ultimately improve quality of life.
When should I involve patients and members of the public?
Again, this is something you need to think about carefully. It may be helpful to think about each stage of the research process, as illustrated in the diagram below, and what patient and public involvement would add.
It isn’t necessary to involve people in every stage of the research if the involvement isn’t going to add anything. However, do make sure to incorporate mechanisms to involve people in the latter stages of the research as part of the research design.
© INVOLVE See Hanley B et al (2003) Involving the public in NHS, public health & social care research: Briefing notes for researchers (2nd edition) INVOLVE
How should I involve patients and members of the public?
There are many different ways you could involve people in your research. However, before you do get people involved it’s important to talk to them about how and when they want to be involved.
For example, you could include a patient as a member of the research steering group or to facilitate the focus group in the qualitative strand of your study.
Patients and members of the public could also be involved in areas such as developing information for study participants, recruitment of peers as participants and the dissemination of results at the end of the research process.
What other things should I think about?
It’s important to think about involving people from marginalised and disadvantaged groups. These are people that have not always been given the opportunity to get involved, but can offer a great deal. For example, people with learning disabilities are often not involved because some people think it would be difficult to engage with them and that they won’t have much to contribute to research. However, people with learning disabilities live with a variety of long-term conditions and health problems and have often faced barriers and discrimination when trying to access health services and treatments. Their involvement can provide invaluable insights and perspectives that would otherwise be overlooked.
Don’t forget to ask for money for involvement in your funding application. If you want to involve people in a meaningful way it will cost money! At the very least you should pay travel and other reasonable expenses related to the involvement. However, you may also need to include other costs. For example, if you ask carers to get involved in your research you may need to pay for a sitting service to enable them to leave the person they care for to attend research meetings.
Finally, be proactive when you want to involve people. Don’t expect them to come to you and engage people in a way that is accessible to them. Ask people how they would like to be involved and think about barriers and challenges that might stop them from doing so.
To access other websites with information about PPI and PPI publications, please click on the links in the box to the right of the page.