Research Design Service North East
SUPPORT - PATIENT AND PUBLIC INVOLVEMENT
Involving North East People and Communities in Research
The vision of the National Institute for Health Research (NIHR) is that health and social care research should be focused on the needs of patients and members of the public. The Research Design Service North East (RDS NE) encourages patients and members of the public to be involved in all aspects of research design. RDS NE advocates the model of active patient and public involvement (PPI) developed by INVOLVE, the organisation funded by NIHR to promote active public participation in NHS, public health and social care research.
RDS NE is committed to bringing researchers, patients and members of the public together to make active PPI an established and important part of the way research is designed and carried out across the region. For more detailed information, please see the information for researchers or information for members of the public section.
What is patient and public involvement (PPI)?
PPI is where researchers work in partnership with patients and members of the public to develop ideas for research and choose the most appropriate design and ways of carrying out the research, as well as how best to publicise the results. In this way, rather than being participants in research studies, patients and members of the public are valued members of the research team. Patients and the public can contribute to applications to obtain funding for research and can also make an invaluable contribution to areas such as developing study protocols, information leaflets for potential participants, helping with recruitment to studies and writing lay summaries.
Why is patient and public involvement important?
Patient and public involvement is now recognised as an increasingly important and integral part of the research process. This includes consideration of PPI by funding bodies when they determine which studies should be funded.
Patients and members of the public are able to offer researchers unique perspectives, skills and experiences that may prove invaluable to the research, but would otherwise be unavailable. Patients living with a specific illness or condition, for example, may have very different views and priorities to researchers about what will improve their quality of life. Talking to patients and members of the public about a research idea at an early stage helps ensure that the idea relates to something that is important and relevant to people.
Discussing a research idea with patients and members of the public and involving them in its development into a research proposal and funding application ensures that the proposed research remains relevant to people’s needs and concerns and is focused on the needs of the population it aims to benefit. Effective patient and public involvement results in research that is designed in a way that means patients and members of the public understand what research is about, that research is credible to the public and that research methods make studies accessible to participants.
Involving patients and members of the public also means that research outcomes are likely to be clearer and more likely to result in the development of new treatments and services that directly benefit patients and improve their quality of life. This is particularly the case when research is designed in a way that involves patients and members of the public in the dissemination of results. For example, involving representatives of community groups or larger, national charities can prove invaluable in publicising results and effecting change.
What expertise can a Patient and Public Involvement Officer offer?
RDS has a dedicated Patient and Public Involvement Officer, who has extensive experience of PPI in the context of health and social care. Advice and support is tailored to individual needs, and is available both to researchers and patients and members of the public.
For researchers we can provide:
- General information, resources and advice about patient and public involvement
- Specific advice and support in relation to the development of PPI in research ideas, protocols and funding applications. This includes review of protocols and funding applications by the Patient and Public Involvement Officer and, where appropriate, subsequent face to face meetings for further advice and support in relation to the further development of PPI
- Help in finding people to involve through the RDS NE PPI Database.
RDS NE is also developing a small network of regional consumer panels that will offer researchers consumer review and advice directly from patients and members of the public. This will include access to smaller, proposal specific consumer panels matched to individual research proposals.
PPI support offered by RDS NE aims to give a combination of approaches that will give researchers a choice in relation to both the level and speed of involvement they want in their research design.
For patients and members of the public we can provide:
- Information and advice about patient and public involvement in health and social care research
- Opportunities to get involved and introduction to relevant researchers
- Appropriate training and support
Patients and members of the public interested in getting involved can register for the RDS NE patient and public involvement database.
What should researchers think about before meeting the RDS NE Patient and Public Involvement Officer?
Researchers should think carefully about PPI from the early stages of refining a research question through to the development of research proposals and funding applications. It is important not to involve people just to “tick the PPI box” with the intention of improving the opportunity to gain funding.
Before meeting the PPI Officer researchers should think about:
- Who they want to involve in their research
- How they want to involve people
- When they want to involve people
- What the involvement will add to the research
- Any barriers or challenges that may make it difficult for people to get involved and how these could be overcome
The PPI Officer can then help develop these areas as well as offering further advice and support to develop PPI and, where appropriate, practical support to identify people to involve and the best way to engage them.
RDS NE offers advice and support relating to PPI, but it is the responsibility of the researcher to develop and facilitate the involvement in their own research.