As we approach the third anniversary of the Shared Commitment to Public Involvement in Health and Social care Research, I want to reflect on our some of our public involvement achievements from over the past 12 months.
Firstly, as the Shared Commitment is a partnership, I know this isn’t solely an HRA achievement, but I’m particularly proud of how much the Shared Commitment has grown. It was launched in 2022 with the National Institute for Health and Care Research (NIHR) and 12 other leading health and social care organisations. Since then, the Shared Commitment has grown to more than 30 organisations, which includes Cancer Research UK, NHS England and NICE.
Over the past year, more than 10 organisations have joined the Shared Commitment and the first ever higher education institute, the University of York, will be joining as we mark the anniversary on 10 March.
This is a fantastic achievement and speaks to the core principles of the Shared Commitment, which is that public involvement ‘is important, expected and possible in all types of health and social care research.’
This ethos has driven our approach to public involvement in our own work and over the past year public involvement has been crucial to how we’ve shaped key projects and activities.
Our public involvement team have continued to support the roll out and implementation of the new Participant Information Quality Standards, which seek to improve the information that people receive when they are invited to take part in research.
The standards are applied UK-wide by research ethics staff and involving members of the public in helping to ensure that patient facing information is more accessible is one of the key requirements.
These standards include template General Data Protection Regulations (GDPR) transparency wording, to let people how their data will be used if they choose to take part in research and we involved members of the public in developing the GDPR wording.
This involved holding workshops to find out exactly what people want to know when it comes to their data. The workshops included members of the public who have taken part in research, Research Ethics Committee members and members of the research community.
Based on the feedback we received, we changed our template wording to improve clarity and better reflect people’s concerns about the use of their data.
This insightful and invaluable feedback was crucial to getting this work right. Clear and accessible information about how people’s data will be used if they take part can contribute to building trust in research.
As we embed public involvement throughout the sector, it is also important that our Research Ethics Committee (REC) members are supported to be advocates of public involvement in the ethical review process, something we know they are very keen to do.
This is why our REC development days last year focused on the role of REC members in encouraging research that is with and for everyone, including increasing the diversity and inclusion of people taking part in research. We are now piloting guidance for REC members that will support them to ask researchers questions about whether appropriate perspectives have informed the design of the research.
We committed to open more opportunities for people with lived experience to be involved in our planning and decision making. This year, we’ve invited members of the public to be involved in the development of our new strategy, which will set out what we want to achieve over the next three years and will be launched this summer.
We are also planning to annually publish data on rates of public involvement going forward. This will help us better understand what is happening and inform work to increase public involvement.
But a challenge in doing this is ensuring that a focus on increasing public involvement does not create perverse incentives and encourage tokenistic involvement.
It is really important that the public is involved in the design and conduct of research in a meaningful and impactful way, in line with our best practice principles and the UK Standards for Public Involvement. Poor involvement risks eroding trust in research.
This is where the role of the Shared Commitment will be crucial.
Together we are raising awareness of the importance of public involvement and creating consistent expectations across the system. Now we can work together to ensure that the involvement is done well.
Matt Westmore, HRA Chief ExecutiveA blog by