Patient and Public Involvement in Research (South Yorkshire)
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This page provides a common understanding across the South Yorkshire Health Community of patient and public involvement in research.

Who are ‘patients and the public’
The term ‘patients and the public’ includes patients, carers, service users, representatives of people who use services, and individuals or groups that are affected by health or clinical research issues.
These people and organisations have a range of life skills and abilities that they can bring to a research activity.  They may have knowledge of a particular community or have gained expertise through personal experience of their condition or that of someone they know.  Alternatively, they may be users of, or potential users of, NHS Services. These various attributes, can complement the knowledge and expertise of researchers.

What is ‘involvement’
The term ‘involvement’ means the active involvement of people in research processes so that research is carried out with or by members of the public, rather than to, about, or for them.

For example, patient and public involvement in research can occur in a range of ways, a variety of roles and different contexts throughout the research cycle.  Examples of such involvement include the setting of research agendas, prioritising of research topics, commissioning research, reviewing applications for research funding, performing study design, promoting creativity of research methods, collecting data, developing written material such as information sheets, analysing research data, publicising and disseminating research findings, implementing research findings and monitoring and evaluating the implementation of research findings.  In user controlled or user led research, users develop, take forward and drive a research study.  Others may adopt the roles of advisor or co-researcher.

Potential benefits of patient and public involvement of research
Benefits of patients and public involvement in research includes the following:

  • It can improve the quality of research.
  • It can improve patient recruitment into clinical studies.
  • It can help to increase retention of participants in research studies.
  • It can assist in the dissemination of research.
  • It can influence and improve research design and methods.
  • It can improve information provided to participants of clinical studies.
  • It can improve the relevance of research.
  • It can enable the dissemination of research findings to be more accessible.
  • It can help disseminate the results of research to a wider audience.
  • It can encourage the implementation of research findings.
  • It increases the likelihood that research asks the right questions in the right way.
  • It enhances the chances of researchers obtaining funding.
  • It can empower patients and members of the public, and make them feel valued.

Important considerations 
It is important that patients and members of the public involved in research are given adequate support.  It is also important to reward and recognise their involvement.  Such rewards should include travel reimbursement as a minimum and payment for time as an ideal. South Yorkshire CLAHRC have a payment policy. 

Please contact Dr Jill Thompson for details, 0114 2220768

Patients and members of the public involved in research should be enabled by making the research activity accessible.  This can be achieved for example, by choosing suitable venues, convenient meeting times as well as by avoiding the use of jargon.  Patients and members of the public should be fully informed on what to expect from their involvement, and what they can expect from the researcher.

Other issues that may need to be considered with regards to patient and public involvement include, access to the researcher, maximising diversity and ensuring appropriate confidentiality.  All partners involved in a research activity, including patients and members of the public must be, and feel, treated with respect and valued.