In our blog two weeks ago, Director of Communications and Engagement, Amanda White, discussed the creation of the HDR UK Public Advisory Board. This was a significant first step in establishing a forum for the direct engagement of patients and the public in all aspects of our work.
Last Tuesday we followed up on this by running a Frontiers Meeting for Patients, Public and Charities at the Wellcome Trust in London with the support of the AMRC (Association of Medical Research Charities). This was a well-attended event with 53 attending in person and another 38 remotely by live streaming.
HDR UK will be publishing a full report on the event but I wanted to share a few of the key messages that came through for me to each of the questions posed.
What opportunities from health data do you find most exciting and engaging, and why?
- Patients are essential, they are crucial to unlocking data.
- Wider inclusion. Make sure the more vulnerable communities have their views heard.
- Don’t forget mental health.
- Patients want to see what the research achieves and ensure the research is implemented.
What would you see as the main risks and public concerns about health data, and why?
- Who owns the data? It is a ‘scandal’ that we don’t control our data and can’t donate it like blood.
- Worries about commercial interest not aligned with patient benefit.
- Security around control of data and de-identification.
- Lack of inclusion of groups in discussion and even in the data. This must be inclusive, and we must reach out to engage where people are and not expect them to come to us.
- Be honest about the use of data, why and the benefits.
How can we generate public trust and confidence in how data is collected, used and safeguarded?
- Total transparency is key.
- We must make sure bad results are published alongside the good stuff.
- Clear and accessible information at all stages and listen to feedback.
- Educating people on why decisions (that are informed by data) have a real impact.
- HDR UK should have a Patient Charter.
What are the best ways to embed public engagement in the work of the Digital Innovation Hubs?
- Need to understand difference between patient engagement through charities and public engagement.
- Need to understand that not everyone wants to engage, but they should still be fully benefited by the research.
- Need innovative ways to reach out.
- Be respectful of people time and input.
- Keep a fresh perspective.
- Cannot be tokenistic, must be inclusive, involve large groups and continue through the programme. Must include feedback to show what has been impacted by the input received.
There were so many valuable arguments and discussions that it has only be possible to pick a few key topics – but there were so many critical points to be considered moving forward. One area that was clear to me is that we need a forum to discuss the wider implication of the use of health data. At HDR UK, we are focused on the use of data for research, other groups are looking at how data might impact clinical practice, or genomics, or health service improvement, or particular patient groups, etc. Many of the questions raised were either common to several aspects of the use of data or crossed over between them in such a way that we need to consider how we all work together to ensure that we have a constant focus on the use of health data, in all its aspects, for the good of all our communities.
I would like to thank Katherine Cowan, who facilitated the meeting, and also thank the table coordinates for enabling a lively and informative discussion.
We heard very clear views that engagement must continue throughout the programme, not be tokenistic, and reach out to communities that are under-represented who will often have the different and critical input to bring forward. Our HDR UK Public Advisory Board will bring some of this, but we also want views on how we can be more effective. We have DIH Roadshows planned for around the country with meetings in Southampton, Exeter, Cardiff, Manchester, Newcastle, Nottingham and Belfast. Details are available on our website.
We will also be planning regular webinars, but we also want to learn from your experience. What other approaches might work? How do we reach into the less engaged communities to seek their views from where they are? What approaches might work for those who need a ‘safe space’ to speak up and discuss their views, ideas and concerns?
Public and patient engagement is critical for all those involved with research on health data. It must guide us and ensure the research really delivers benefit for all (including those who choose not to engage). We need to provide ways for patients and the public to increasingly work with researchers, and as said by one attendees at the meeting:
“It is not data and machine learning, or AI which will find cures for disease – its patients who share data, who will.”
For more information about Health Data Research UK, visit: www.hdruk.ac.uk