Organisations have a statutory duty to involve service users, carers and the public in the commissioning, planning and delivery of all Health and Social Care (HSC). This process is known as Personal and Public Involvement (PPI). It means including individuals in decisions about their specific care or treatment and consulting members of the public and the wider community on the design, delivery and location of services. For more information see DHSSPSNI PPI Guidance
What does PPI mean for Research?
In Research, PPI means involving people in all aspects of the research process as partners rather than as research participants.
HSC R&D Division provides funding to support Health and Social Care research. This is used to: building research infrastructure (networks, facilities etc); train health and social care researchers; and support research studies and clinical trials. We want to ensure that when we are deciding what to fund that PPI is integrated into the research process at all points in the research cycle. We think this helps researchers ask the right questions and prioritise topics that are important to service users and carers and ultimately achieve outcomes which are meaningful to people rather than researcher led. We also know that PPI can encourage more people to take part in research studies or clinical trials, help make sure the research findings are heard, and improve care in the future.
This link explains it in more detail: PPI in Research (Involve website)
How to get involved in PPI in Research?
To find out more about getting involved in research in the HSC please email Gail Johnston or Tel. 028 9536 3490
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Are you interested in research?
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Do you have good communication skills?
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Have you experience of working in groups or committees?
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Do you have time to participate in meetings or review research documents?
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Would you like to develop new skills and knowledge?
HSC R&D Division have published a Strategy for Personal and Public Involvement in HSC research which tells you about ways in which you could become involved.
In England the National Institute for Health Research (NIHR) fund an organisation called INVOLVE, which supports public involvement in the NHS, public health and social care research. The INVOLVE website has some useful information and resources for the public interested in research and researchers interested in involving the public in thier research. This includes a 2-minute animation based on the true story of a young man, Tom, who was diagnosed with an illness and through this became involved in research. Click here to hear Tom's story (INVOLVE website)
The following booklets (published by the INVOLVE Support Unit) provide information for service users, carers or members of the public who would like to be involved in research,
Examples of PPI in Research in Northern Ireland
The Northern Ireland Cancer Research Consumer Forum (NICRCF)
The NICRCF is established to increase personal and public involvement in cancer research across Northern Ireland. It is co-ordinated by the Northern Ireland Cancer Trials Centre and supports consumers across the various cancer research groups within Health and Social Care Trusts, Queen’s University Belfast, Ulster University and beyond.
The members of the Forum meet together at least four times a year and are involved in various activities including: reviewing and advising on clinical trial protocols and patient information leaflets; research steering groups; trial management groups; advising on the best methods and information to raise patient and public awareness about cancer clinical trials available in Northern Ireland; and promoting PPI in cancer research
For more information about the NICRCF click on the following link: http://www.nictn.hscni.net/information-for-patients-public/
During early 2015 the Health Research Board - Trials Methodology Research Network in association with The Irish Times, ran an article writing competition on clinical trials. Kate Burns, a NI Cancer Research Consumer Forum member won 2nd place in the competition and you can read her inspiring article here as well as the other prize winning essays.
hear from a member of NICCRF ..
‘Following my diagnosis I was asked if I would like to participate in a cancer clinical trial. It was an easy decision for me because I realised that the treatment I received was made possible because others had taken part in previous trials. It’s only through trials and the research involved that better and more effective treatments can be perfected.’ Ken McBride
Research Advisory Groups in Ankylosing Spondylitis and Rheumatoid Arthritis
Staff in the Western Health and Social Care Trust are actively encouraging patients, carers and the wider public to participate in influencing the research cycle to ultimately bring benefit to patient outcomes. An example is the Joint and Spine Research Team who have set up Research Advisory Groups for Ankylosing Spondylitis and Rheumatoid Arthritis. In these groups people with an experience of these conditions are able to share their personal insight with researchers.
Dr Philip Gardiner, Western Trust Consultant Rheumatologist said: “We are delighted with the excellent feedback we have received from the patients and their willingness to join our research advisory groups. The Research groups are made up of research staff and patients with an experience of the disease who want to be actively involved in the research process. The additional knowledge we gain from patient’s experiences can help challenge assumptions, identify problems and help come up with solutions to ultimately reflect real patient needs.”
Evaluating the role of PPI in Research
A number of researchers have looked at the role of PPI in different research settings. We highlight a few of these below:
Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis - Research paper published by British Medical Journal. Click here to access BMJ website>
Involving You, Improving Care: The Public Health Agency and Patient Client Council commissioned a collaboration, including Queen’s University Belfast and the University of Ulster, to undertake research into PPI. The research led by Dr Joe Duffy, Lecturer in Social Work, Queen's University of Belfast, is now completed. Click here to access the published findings from this study.
Meaningful Involvement of Users, Carers, and Communities in the development and delivery of Palliative Care: Voices4Care is an initiative involving people receiving palliative care (service users), carers and the wider community in the work of All Ireland Institute for Hospice and Palliative Care (AIIHPC). Through the Voices4Care group, AIIHPC is committed to having the views of patients and their families at the heart of what it does. Patients, their families, carers and others bring unique and fresh insights about care which are invaluable for those providing or making decisions about palliative care. The perspectives of Voices4Care members’ informs and influences AIIHPC’s work. This report provides an evaluation of the initiative recently completed by Ulster University.
Exploring barriers to public engagement by UK researchers: research results: A national survey* in 2015 into the factors that affect public engagement by researchers across the UK shows there has been a positive shift in researchers’ understanding and attitudes to public engagement over the past ten years. This shift represents an important milestone on a longer journey of culture change for the research and higher education sectors, which remains a ‘work in progress’.
The survey finds that researchers are now considerably more personally motivated in this area, yet challenges remain. The findings also suggest that more needs to be done to support, reward and recognise researchers to embed public engagement as an integral part of a research career. Key findings of the research are available in an infographic or download a copy of the main report.
Public Attitudes to Research
It is important that the public is consulted in relation to many topics related to research. We highlight some resources in this area which may be of interest to you:
A report in 2016 on the Northern Ireland Life and Times survey (NILT) on public attitudes to data sharing in Northern Ireland has found that there is strong public support for the sharing of personal data for research purposes where a clear benefit to society can be demonstrated. It is the first survey of its kind to measure attitudes towards data sharing in Northern Ireland, with a focus on health data. Download the report here>
In 2013 the Health Research Authority (HRA) carried out a survey of the general public attitudes towards health research. Also see the 2017 survey which will take you to an updated survey which shows 97% of the public think health research is important and 74% of people think every patient should be offered the opportunity to participate in research.
In 2014, Ipsos MORI conducted a study in partnership with the British Science Association, on behalf of the Department for Business, Innovation and Skills (BIS) and the Economic and Social Research Council (ESRC) on Public Attitudes to Science
Wellcome, a major funder of health and social care research has published many useful articles on this topic: https://wellcome.ac.uk/what-we-do
For example, in the course of a study involving human participants, researchers may make a finding that has potential health or reproductive importance to an individual participant (Health Related Findings or “HRFs”). Whether and how HRFs should be fed back to the research participant is currently subject to intense debate. Given the absence of guidance and lack of evidence and consensus on how HRFs should be handled, a framework developed by Wellcome and the Medical Research Council (MRC) has been developed to help researchers identify and consider the relevant issues when designing and implementing a policy on the feedback of HRFs. It also provides useful guidance for members of Research Ethics Committees and Research Governance Committees. The report can be downloaded here and page 2 contains the framework. http://www.mrc.ac.uk/documents/pdf/mrc-wellcome-trust-framework-on-the-feedback-of-health-related-findings-in-researchpdf/
The development of this framework was informed by a wider project, including: a review of the international literature focused on the legal and ethical issues; a review of existing policies and practice in the UK and US; an analysis of the costs and timescales associated with feedback in genetics and imaging studies; research on public attitudes towards the feedback of HRFs, which found that generally there is a strong preference for feedback particularly where a condition is serious and treatable; and a workshop focusing on the legal issues associated with HRFs. You can download the 2012 report on Assessing Public Attitudes to Health Related Findings in Research