Collaboration between HDR UK and its Public Advisory Board puts public voices at the centre of the organisation, involving them in decision-making at every level.
By Munisa Hashimi, HDR UK Public Advisory Board member.
Credit: HDR UK
Health Data Research UK’s (HDR UK) Public Advisory Board was set up in early 2019. The need was driven by its mission of uniting health data to enable discoveries that improve people’s lives. This is why HDR UK believes that people should be at the centre of health data research.
Born with congenital cataracts on both eyes, a condition that affects my vision, I have experience of being a patient with a rare disease.
My experiences as a patient, as well my background working with patients, healthcare professionals and members of the public, inspired me to go into scientific research. I am now completing my Doctorate of Philosophy degree in the field of genetic epidemiology, looking specifically at cataracts.
Involving public voices
I joined HDR UK’s Public Advisory Board in January 2022. My research supervisor and I subscribe to regular HDR UK emails, and we received one about the board. He encouraged me to join due to my enthusiasm around patient and public involvement and engagement (PPIE) in data research.
My main goals at the time were to diversify data to impact more people and have more accessible content about health data for patients and the public.
How the Public Advisory Board works
All 14 members of the Public Advisory Board bring a broad spectrum of different experiences. I think the diversity of our experiences is what makes our discussions impactful. We’re all motivated by an interest in health data, because of our personal experiences, professional background, or curiosity about the topic.
The board hold 11 meetings a year, and we can all feed into the meeting agendas and pre-readings. The agendas are co-developed by the chair and deputy chair of the board, who are both public members, and HDR UK’s PPIE Manager, Ester Bellavia. I’m thankful for Ester’s continual support during my time on the board and her facilitation of our work.
A member of the Senior Leadership Team joins our board meetings each time. This is an amazing opportunity for us to influence decision-making at the senior leadership level.
Video credit: HDR UK
Video transcript and on-screen captions are available by watching on YouTube.
Activities we take part in
While we are an advisory board, it seems like a very natural extension of HDR UK. We challenge what they are doing, and they consult with us on new projects and partnerships.
What I love about working in such a collaborative way is that we can influence projects and ‘co-develop’ them from inception. We have the opportunity to opt in to subgroups focused on specific projects. The subgroups suit me because I’m very methodical in my ways of working. They are action-focused groups working towards a specific goal.
For example, I contributed to the work of the Pan-UK Data Governance Steering Group, including informing the development of a data access map. This aimed to help researchers and the public understand who can access data and how. Together with other board members, I felt that it was equally important for members of the public to understand the process. So we suggested a public-facing version, including instructions on how to navigate the data access process and map.
I’ve also worked on making a user-friendly tool to help researchers access data, called a ‘Data Access Agreement template’. HDR UK came to us at the beginning, when first drafting the template, and we co-developed it together. I felt that myself and other members had a material impact on making this more accessible, which will then have a huge impact on health data research in general.
Impact of the Public Advisory Board
Through leading our own projects, plus collaborating with HDR UK on different projects, the Public Advisory Board have delivered the following results.
Created communication standards to encourage trust in the use of health data
Through surveying 45 members of the UK Health Data Research Alliance, we created ‘Transparency Standards’ to inform best practice for communicating data access processes. We said we hadn’t seen any change, challenging HDR UK to go further to ensure the standards are implemented. HDR UK ran a workshop to help explain the standards then secured funding for 19 projects aiming to increase transparency about accessing data.
Who can access health data is an emotive topic, so clear communication about how data is made available to researchers is important.
Improved tools to help researchers access data
As part of creating a legal toolkit to help standardise how institutions and researchers access data, we co-developed a Data Access Agreement template.
Our input on the language, content and structure resulted in significant changes to the template and data access processes.
Our feedback led to more emphasis on data quality in the template. We highlighted other changes for improving public trust in how data is accessed, including organisation-level responsibility, researcher training and consequences for non-compliance.
Raised the profile of public involvement and its value
As part of our role, we showcase our work and why it’s important. Other board members and I have co-authored a journal article with HDR UK staff to highlight the data access project as an example of best practice in public involvement.
I have also presented at external-facing webinars and events, on behalf of HDR UK, on data safety and what we’re doing as a public advisory board to help.
Lessons learned
Be inclusive and flexible
HDR UK offers us different ways of providing feedback, for example:
- via a one-to-one call
- through group discussions
- via email
- by commenting on documents directly
This flexibility helps us fit Public Advisory Board work in around our other commitments. HDR UK also ensures all information is provided in various formats and described using clear language, to ensure it can be used by everyone.
Listen to people’s experiences
Each of us will have a different experience of health data research. The number of times I’ve seen my small experiences add huge value to a project is the reason why I think members of the public should be involved in research. The more experiences and varied outlooks we can bring, the better the impact.
Health data can be made accessible
Health data research is a very complicated space and a lot of information is not clear to understand for patients and members of the public. Whilst this a significant hurdle to overcome, through the Public Advisory Board I’ve realised that it can be done efficiently, and in co-development with members of the public.
Video credit: HDR UK
Video transcript and on-screen captions are available by watching on YouTube.
This case study is based on an interview that took place in August 2023.
Last updated: 28 August 2024