The Institute of Health and Wellbeing (IoHW) believe that patients, carers, service users and the public should have a role in shaping the services and support they access in order to improve their lives.
We have been working with patient and public representatives to develop and implement a framework for involvement to ensure that everyone who wishes to become involved in our work is treated fairly, with integrity and respect. The result of this is the newly established Community Engagement Research Forum (CERF) which aims to promote new opportunities for public and patient involvement.
Community Engagement Research Forum
“Public voice in health and wellbeing research”
The Institute of Health and Wellbeing’s Community Engagement in Research Forum (CERF) has two clear objectives:
1.To ensure public and patient involvement on the IoHW Board, Centres and projects.
CERF will promote new opportunities for public and patient involvement (PPI), and offer academics the opportunity to bring early stage ideas to the group to get lay feedback on the research question. CERF will also hold IoHW leaders to account, where PPI has not been included without full justification, or where the principles have not been applied consistently.
2. Support public and patient representatives in IoHW
CERF will ensure the fair, transparent and collaborative treatment of PPI representatives. This will include developing policies and good practice for IoHW, and supporting and encouraging PPI representatives to participate in training opportunities relevant to their needs and interests.
As the membership, expertise and experience of CERF grows, IoHW will encourage CERF members to identify research projects on involvement that could be conducted with academic colleagues. Termly meetings of CERF will ensure regular communication between IoHW and the representatives involved in its work.
Recently CERF members have been involved in several Institute research projects including:
Mind Get Set to Go – Lived Experience Panel
Mind, the mental health charity, commissioned the IoHW to evaluation the effectiveness of a 3 year programme aimed to involve people with mental health problems in mainstream sport. PPI representatives where recruited to facilitate the design of the data collection tools, for example surveys and qualitative interview and focus group questions. This will ensure that the questions we ask are meaningful to the participants in the evaluation and that we collect the information we need to meet our research objectives.
Cancer Research UK – Personalised cancer risk information
Cancer Research UK commissioned the Institute to develop ways of presenting a person’s risk of cancer, and suggestions to minimise that risk through changes in lifestyle. PPI representatives were recruited to help develop ways of presenting the personalised cancer risk information, giving opinion on different formats and content of the information to make sure that they are acceptable. Opinion was also sought on the questions that patients would be asked about this type of risk information. After the risk information had been trialled with patients and feedback had been sought via interviews, PPI representatives were invited to be involved in interpreting the findings. Their views were also sought on how well we achieved what we thought we would during the design phase of the project.
Non-Vocational Education Focus Group
The Institute, working in partnership with research teams in 5 European countries (the UK, Poland, Italy, Spain and Turkey), were commissioned by the European Commission to carry out research to explore opportunities for non-vocational education with people aged 50+. PPI representatives were invited to take part in a focus group to explore their thoughts and feelings about taking non-vocational courses and studying in higher education settings. The information will be used to create educational courses for people 50 years or older which are appropriate to their needs.
Opportunities to become involved in our work will be advertised here, so please visit these pages regularly.
How do I find out more?
Membership of the Community Engagement Research Forum is open to anyone with an interest in social health and wellbeing and would like to get involved in our work.
The forum meets termly (3 times a year) and the next meeting is on 1st February 2017, 2.00pm – 4.00pm, at the University of Northampton.
If you would like to come along to the next CERF meeting, or find more about CERF, please contact Jan Jones, Project Administrator at the Institute, at firstname.lastname@example.org or telephone 01604 892638.