Patient and Public Involvement in Research
ScHARR is committed to ensuring that there is meaningful patient and public involvement (PPI) in the design and conduct of all research that ScHARR researchers undertake.
This webpage is intended as a resource for ScHARR researchers on PPI. It provides links to other organisations of relevance such as INVOLVE and the NIHR Research Design Service for Yorkshire and the Humber.
What is PPI in research?
PPI in research means research which is done with or by patients and the public, rather than to, for or about them. Involvement in research refers to an active partnership between researchers and patients and the public in the research process. This often means that patients and the public have a decision-making impact on one or more stages of the research process.
What do we mean by patients and the public?
The term ‘patients and the public’ encompasses a wide variety of people, groups and life experiences. INVOLVE, the NIHR-funded organisation that promotes PPI in research in England, has defined patients and the public as:
patients and potential patients; people who use health and social services; informal carers; parents/guardians; disabled people; members of the public who are potential recipients of health promotion programmes, public health programmes and social service interventions; organisations that represent people who use services
It is acknowledged that this definition is very broad. However, INVOLVE goes on to say that, 'Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services'.
Why is PPI in research important?
There are four main arguments or rationales for why PPI is important for health research:
- The epistemological argument: patients and the public have knowledge of their own illness, disease or health condition that can be of benefit to researchers, who may not have first-hand experience themselves of the illness, disease or health condition that they are researching
- The moral imperative: patients and the public have the right to be involved in any publicly-funded research that may impact on their health status or the services that they receive
- The consequentialist argument: PPI has the potential to improve the quality, relevance and impact of health research, whilst also improving the transparency of the process and the accountability to the wider community of the researchers themselves
- The policy imperative: PPI is currently Department of Health and NIHR policy, so funding often depends on getting PPI right at the grant application stage
Approaches to PPI in research
INVOLVE, the NIHR-funded organisation that promotes PPI in research in England, has talked about three main levels of PPI in research. Each of these levels is a different approach to PPI and none should be seen as superior to the others; the level of involvement often depends on the patient/public group concerned and the level of involvement that they wish to have or are capable of having.
The three levels of public involvement are consultation, collaboration and publicly-led research:
- consultation (where researchers seek the views of patients and the public on key aspects of the research)
- collaboration (an on-going partnership between researchers and patients and the public throughout the research process)
- 'publicly led' (where patients and the public design and undertakes the research and where researchers are only invited to participate at the invitation of patients and the public)
The contributions that patients and the public can make to health research
There are many ways to involve patients and the public in your research. This table suggests ways in which patients and the public could contribute to the design and conduct of qualitative and quantitative health research studies, and also to systematic reviews.Additional information about ways in which patients and the public could contribute to the in the research cycle is available in the NIHR PPI handbook available at: http://www.rds.nihr.ac.uk/latest-news/rds-patient-and-public-involvement-handbook/
PPI in the development of research proposals: research ethics advice
The involvement of patients and the public in developing research proposals, as consultees, advisors or as co-applicants, does not normally require ethical approval.
It is good practice to provide written information about the involvement activity so that people can make an informed decision about whether or not to provide assistance and advice.
Researchers should be aware that the National Research Ethics Service and the University of Sheffield have different definitions of what is meant by research, and it is recommended that they consult the following documents for further information:
- INVOLVE/National Research Ethics Service, Patient and public involvement in research and research ethics committee review
- The University of Sheffield: Research Ethics: General Principles And Statements
- ScHARR’s Research Ethics Review
Reporting PPI and measuring impact of PPI:
- The GRiPP checklist (Staniszewska et al 2011) is a useful tool to guide reporting of PPI in research. Additionally, guidance exists to assist researchers to design an assessment of the impact of public involvement in their research (Popay et al 2014).
- Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International journal of technology assessment in health care, 27(04), 391-399.
- Popay, J and Collins, M (editors) with the PiiAF Study Group (2014). The Public Involvement Impact Assessment Framework Guidance. Universities of Lancaster, Liverpool and Exeter.
Links to further sources of PPI information and support
INVOLVE has produced a series of guidance notes for researchers on how to involve the public in research. Other important sections of the INVOLVE website include answers to a list of frequently-asked questions, including advice on payment and expenses for patients and the public actively involved in research, INVOLVE also offer advice on budgeting for PPI and the Involvement cost calculator may assist researchers to think about costs, but please also refer to the University guidelines for paying PPI panel members. Additional advice is available in the a putting it into practice database for people who are planning or developing PPI in research or wishing to broaden their practice, an evidence library of papers on PPI in health research and a resource on developing training and support for PPI.
- The NIHR Research Design Service for Yorkshire and the Humber (RDSYH)
The RDSYH is able to offer PPI support for those ScHARR researchers who are developing research ideas into grant applications for the NIHR and other major funding bodies such as the MRC and the EPSRC. The RDSYH website has useful PPI information including details of their Public Involvement in Grant Applications Funding Award contact details of generic and topic-specific PPI panels that exist in the region, that could be utilised by ScHARR researchers, and useful guidance on making contact with PPI groups in the Yorkshire and Humber region. There are also links to the PPI leads of the various NIHR topic-specific clinical research networks.
- People in Research
People in Research is a site for both patients and the public and for researchers. ScHARR researchers can use this site to advertise to patients and the public any involvement in research opportunities that they may have.