PATIENT AND PUBLIC INVOLVEMENT IN NHS  RESEARCH (PPI):

                        ‘WOULD YOU LIKE TO GET INVOLVED?’

First, some important information:

THE RESEARCH GOVERNANCE FRAMEWORK

• A government publication issued by the Department of Health in 2001 with a 2nd edition in 2005.
• It is a document that sets out a framework for the governance of health and social care.
• It affects all research concerned with the protection and promotion of public health, research undertaken in or by the Dept. of Health, the NHS and other relevant agencies.
• “The public has a right to expect high scientific, ethical and financial standards, transparent decision-making processes, clear allocation of responsibilities and robust monitoring arrangements”.(RGF. Section 1, para. 1)
• No more scandals (Alder Hey).

ADVANTAGES OF PATIENT AND PUBLIC INVOLVEMENT IN NHS
RESEARCH

• An end to the ‘them and us’ attitude of the medical profession to the lay community. Many doctors and research professionals are enthusiastic about the empowerment and inclusion of patients and public.

• People who use services can help to ensure that the issues that are identified are important to health care, public health and social care as a whole.

• People who use services can help with the recruitment of other people for research projects.

• People who use services can help to report the results of research and work to ensure that changes are made for the better.

3 LEVELS OF INVOLVEMENT:

1. CONSULTATION

• Researchers ask people for their views in one-off meetings.
• Views may not be adopted but may influence researchers.

2. COLLABORATION

• Active, on-going partnership between members of the public and medical staff in the Research and Development process.
• Example: steering ( i.e. management) committee for a research project.
• P.P.I. collaborates with researchers to design, undertake and/or disseminate (i.e. publish) the results of the research project.

3. USER LED.

• Power, initiative and decision making with the public (service users)
• Professional researchers may still be involved.
• Public not necessarily involved at every stage.
  

What being a member of the public involved in NHS research actually means:

Being involved in the design, conduct, analysis and reporting of research. This  will lead to training and development of skills such as:

• Reading research proposals
• Writing Patient Information Sheets.
• Designing Questionnaires in plain English.
• Involvement in management meetings and groups..
• Writing up summaries/communicating findings in plain English.

Why should I get involved?

Sense of achievement and doing something so important and worthwhile greatly increases self esteem and improves health – especially mental health.

Here are some quotes from members of the public involved in research:

‘I believe that patients should have a much stronger voice in setting the research agenda’.

‘I completed the project and thoroughly enjoyed the experience and have since gone on to carry out other projects and been involved in many workshops related to research in health and social services’.

‘I became involved in research because I have found there is little knowledge,
understanding or provision for those of us with long term unseen disabilities……… General medical staff are not trained to understand our problems’.

PATIENT AND PUBLIC INVOLVEMENT IN RESEARCH AGENCIES IN THE NORTH WEST:

• National Institute for Health Research (NIHR) Public Involvement Partnerships in Research North West. (formerly Health R&D NorthWest) Email: rds-nw@lancaster.ac.uk

• PPI in research, Salford Royal Foundation Hospital Trust Email: William.Strettle@srft.nhs.uk Telephone: 0161 206 5585