“We have an exciting opportunity to transform research by taking a UK-wide approach, to create more powerful studies, and ensure that everyone benefits,” said Ben Johnson.
What was the process for becoming a Public Advisory Board member?
There was a public call for members and almost 100 people applied, of which 30 were shortlisted. We were invited to an assessment centre, which in effect was roundtable discussions around issues such as what the role should look like, ethics of using patient data and the benefits of access to wide datasets.
From this, nine of us were invited to join the inaugural board, with a mix of patients, people with chronic conditions and those in the science field, from across the UK.
What’s the main aim of the board?
We are here to provide advice on the delivery of HDR UK’s mission, principles and future strategy, with particular emphasis on ensuring that health data is used responsibly for research and innovation. We offer guidance on programmes of work and ensure that HDR UK’s work is focused on improving patient and population health outcomes.
We all feel strongly that whilst it is important that the public is educated on the use of their data for research, we want more co-production with the public. We believe you get better research when it is done in conjunction with those that are living with the diseases and conditions you are studying, and whose data you are analysing.
What have you been involved in so far?
We have hit the ground running! From one day to the next we may be part of influencing the strategy, looking over the Sprint Exemplar Projects, or feeding into the Digital Innovation Hubs Programme. I was recently involved in reviewing grants for scientific research, working alongside academics and HDR UK members to advise and ensure that there is adequate patient involvement in the research.
What is the key strength of HDR UK?
One of HDR UK’s strengths is that it is encouraging researchers to work together, across different universities, institutes and regions. HDR UK has an exciting opportunity to transform research by taking a UK-wide approach, to create more powerful studies and ensure that everyone benefits. For me, it is critical that everyone understands what their data looks like, from their DNA sequence to their medical records, and that they give consent to their data being used to develop a new study, a drug or app.
Find out more about our Public Advisory Board members here.