How the public have been involved in HealthWise Wales to date
Context: Funded by Health and Care Research Wales, HealthWise Wales (HWW) is a national project led by Cardiff University and funded by Welsh Government, which aims to improve the health and well-being of the people of Wales and increase opportunities for the public living in Wales to participate in research.
The project aims to create a register of people who are willing to take part in health and social care research studies, in order to provide information on their health and lifestyle behaviours, to shape the health and well-being of future generations.
HWW was officially launched in February 2016 and there are now over 22,000 people registered to take part. Participants have to be aged 16 years and over, and live or access their primary health care in Wales.
Significantly, HWW's ambition is to create a unique and equal partnership where the public work with researchers to prioritise, shape, design, conduct and deliver high quality research.
Central to the development and progress of the HWW project are members of the public.
Project set up: From the outset, two members of the public were continually part of the task and finish project group that was responsible for the set-up of the HWW project. Public members of the Team also take part in further discussion groups to explore communications and messaging, recruitment to the project together with an independent view of the project direction from a public and patient perspective.
Wider discussion groups were held with members of the public to help identity how research priorities and research questions could be driven by the public; identifying best mechanisms for encouraging dialogue and engagement; and ensuring public involvement would be embedded through all HWW research and data processes. This information was used by Cardiff University in the development of HWW.
The Public Involvement Delivery Board (PIDB) was established in 2015 to provide advice about the public's role in health and social care research. Specifically, the Board oversees HWW and represents the interests of the members of the public who have joined the project. The Board is chaired by a member of the public and includes seven members of the public.
As the project progressed, the public were involved in developing the Participant information for the website, commenting on the advertising materials, shaping the communications materials and engagement plans in order to recruit members of the public to the Project and Researchers participation alike.
Members of the public sit on the HWW Cardiff University project team advising about the day to day management of the project.
A HWW public involvement policy was developed in collaboration with members of the public which sets out the principles for public input to all HWW activities and processes.
Current PI activity: Other members of the public are involved directly with the research team at Cardiff University and are asked to comment on new research studies that wish to potentially use the HWW data. They also work with the team on newsletters and other documents which will be sent to other members of the public. Members of the public have been involved with recruitment and engagement activities, as Champions and Supporters of HWW.
Future PI activity: The public will continue to play a vital role in the future of HWW. Members of the public will be invited to prioritise research questions that they think are important to improve the health and well-being of the people of Wales. Members of the public will also be central to facilitating the adoption of the new PPI National Standards, through collaboration of the PIDB, the members of the public working with the project team and with Health and Care Research Wales.
All public members of the HWW Team are committed to support the health and wellbeing of future generations in Wales and help the NHS in Wales plan for the future.