Have your say on our public involvement and engagement in research priorities

This survey is now closed

In January 2021 Health and Care Research Wales published an action plan which sets out how we can improve public involvement and engagement in Welsh research. This plan, called Discover Your Role in Health and Social Care Research, includes several actions we would like to take across seven focus areas. Following an event in January, we have already started work on immediate priorities identified in discussion with attendees; addressing administrative barriers for the payment of public contributors and the development of a purposeful engagement plan.

We need your help to decide which actions we should focus on next.

We want to know what you think, tell us which three of the 13 activities are the most important to you by taking part in a short survey. This will help us decide which actions to prioritise first in our work (we will address all these activities in time):

1. Deliver a series of ‘seminars’ on public involvement for both the public and research community
2. Make sure public involvement is promoted and supported by senior staff across Health and Care Research Wales
3. Create guidance to support researchers to demonstrate and champion meaningful public involvement in the research process and culture
4. Make sure that members of the public are represented as part of future governance arrangements for Health and Care Research Wales
5. Build relationships with universities and promote the teaching of public involvement as a key part of training courses
6. Conduct an audit of Health and Care Research Wales processes against the UK Standards for Public Involvement to identify areas to improve
7. Make sure arrangements are clear around public involvement resources and payment for time policies
8. Review the ‘package’ of public involvement support for both the public and research staff to make sure it is fit-for-purpose
9. Pursue accreditation of public involvement training, based on the UK Standards for Public Involvement, to support its uptake by the research community
10. Revise reporting requirements for Health and Care Research Wales funded projects and groups, to include people’s first-hand experiences of public involvement
11. Develop a template for the research community to consistently capture first-hand experiences of public involvement
12. Introduce support and guidance for the public so that they can share their experiences of being involved
13. Create a framework to evaluate the difference working collectively makes to public involvement and engagement in Wales

Reshma Raycoba, Head of Public Involvement, NHS Research Governance and Digital (Acting) at Welsh Government, said: “Members of the public are essential to the research process, without them meaningful and life-changing research can’t happen. The impact of research on care has never been clearer than it has as a result of the research efforts during the pandemic. We are so grateful to those who are already involved. Now we need more people to help us shape research studies that deliver better care for the future.

“These actions will help us build on the excellent work already being done in Wales to increase public awareness, engagement and involvement in health and social care research. This is vital for good, safe and ethical research.

“We will work on how to reach out to more members of the public with lived experience in areas we’re researching. We will also support our research community and public involvement and engagement professionals by making their lives easier and sharing what works well.”

Alan Thomas, a member of the Health and Care Research Wales Public Involvement Community, said: “For me having a rare disease, called Ataxia, I think it’s very important to get the perspective of the patient into research protocol, and to get the public involved in research that effects their own health. If you want to find a treatment or a cure for anything you need to be prepared to get involved.”

“I think Health and Care Research Wales’ Discover Your Role plan is really good, it’s very informative, educational and everyone respects everyone’s views. It’s a really good platform to get involved with.”

The deadline to take part was 16 April 2021.

Don’t forget to register for the next two Forum events on the 11 and 13 May 2021 is now open on the Health and Care Research Wales website, where you can choose to register for one or both events