Until five months ago, I will admit that I wasn’t aware of Health Data Research UK (HDR UK).  I saw on a call on LinkedIn for applications to join the Public Advisory Board and was intrigued.

Throughout my career I have seen the benefits of data analysis in a social research context but as a member of the public who has used the NHS services over the years, I recognise that even my data has not been as effectively joined up across systems as I might have thought.  It made me think about the potential positive impact that providing access to, and joining up, a range of data could have in research, which ultimately may improve the lives of all.

Talking with friends and colleagues, it was clear that developing the trust and confidence of the public in providing access to and consent for their data to be used in research is something that needs continuous action.  This could be achieved by showing evidence of the benefits – so I decided to apply to become a Public Advisory Board Member to hopefully play a part in ensuring the work of HDR UK is trusted by the public and patients.

I was really pleased and a little surprised to be asked to become a Public Advisory Board (PAB) Member in January.  There are presently 10 of us, with a regular monthly meeting. The remit as part of the governance structure is to guide and ensure that work carried out by HDR UK is driven by delivering benefits to patients and the public.  As the majority of the members are new in 2022, a number of us are getting up to speed with the activities of the organisation.

Looking to the future

March was my third PAB meeting – and as with all the meetings to date it had a full and varied agenda.

An update on the data access processes working group

The data access processes working group is a small group of four PAB members working together outside meetings to move this specific area of work forward. During March 2021, the PAB surveyed UK Health Data Research Alliance members about public involvement in their data governance procedures.  Following the survey results, the Alliance Board accepted and endorsed recommendations made by PAB that focused on how to improve public involvement in the data access process.  Amongst these was a proposal to re-survey in 2022 to see how Alliance members are progressing – this is what the sub-group is finalising.

An update on HDR UK’s Director presenting to the Science and Technology Committee in the House of Commons

We were updated on HDR UK Director Andrew Morris giving evidence in the House of Commons following HDR UK’s response to an open consultation which the PAB had helped shape, demonstrating the commitment from the organisation to our continual involvement and feedback relating to the activities that PAB have been involved with.

Discussing the Public Advisory Board strategy for 2022/23 and beyond

This agenda item was key and involved PAB looking to plan our initial strategy and work programme for 2022/23 and beyond. We had an excellent presentation from Amanda White (HRD UK’s Executive Director, Engagement and Insights), helping set the scene of the Institute’s future focus as highlighted in the recently submitted quinquennial re view (QQR).  As there are a number of new PAB members there were a lot of questions that were asked and answered as part of the discussion.  This gave us a lot of food for thought – there are numerous things the PAB could prioritise and as such we will be revisiting this again in the near future. To my mind how we participate between meetings will be key to this – sub-groups (there are other PAB members in a group leading our work on Trusted Research Environments in addition to the data access processes sub-group) allow us to drive things forward between the monthly meetings.  We need to be realistic on what can be achieved with the resources that we have and therefore need to prioritise activity to align with the overall HDR UK strategy.

My first impressions

Throughout my career I have come across organisations that talk about involvement and engagement but haven’t necessarily backed that up with truly embedding it in the organisation at all levels.  Whilst I admit, I haven’t got my head completely around the structure of HDR UK, given its size and organisational partnerships, I have been impressed with the range of activities that I have already been asked to input into.  This has included:

  • Reviewing the patient and public involvement and engagement (PPIE) webpages;
  • Commenting on draft marketing literature for the network of nine Health Data Research Hubs (collaborations of leading universities and non-academic partners that use their tools, knowledge and expertise to facilitate the use of health data for beneficial research purposes. Each Hub is a centre of excellence supporting researchers to maximise the insights and innovations developed using this data);
  • Inputting into consultation responses; and
  • Taking part as a public panel member reviewing applications to the HDR UK Director’s Discretionary Fund.

As I mentioned earlier, the PAB is also updating its work from last year looking at public involvement in the data governance procedures of Alliance Members as well as looking to understand more about public involvement in the governance of Trusted Research Environments.

I’m personally looking forward to finding out more about the Health Data Research Hubs in the coming months, and hopefully improving the links between them and the PAB. One of the options for our future work programme is to partner PAB members with QQR areas, which I think is a great idea as this can only add further value in providing strategic advice to all areas of HDR UK’s future work.

It has been great to see that HDR UK has a dedicated core team resource to lead on PPIE, again demonstrating the commitment from the organisation, who have been highly supportive of the new Public Advisory Board Members and helped us to get up to speed.

You too can get involved

Patient and public involvement and engagement is for everyone. Whether you have never done it before or like me you didn’t / don’t know much about health data research, HDR UK want to hear from you. They are keen to involve a diverse range of people in as many different projects and areas of work as possible, and you don’t need to be pro-access to data to get involved. You can sign up to HDR UK Voices network – or look out for the next call for additional Public Advisory Board Members – as it could be you!

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