As the COVID-19 pandemic swept across the UK, the need to build a national health data capability to support priority COVID-19 research was obvious. Set up by the Government’s Chief Scientific Adviser, the Data and Connectivity Study is co-led by HDR UK and the Office for National Statistics and is responsible for linking relevant health, social and administrative data and making it available to five other National Core Studies to answer priority COVID-19 research questions.   

HDR UK is committed to putting the patient and public voice at the heart of what we do and ensure that decisions on data access and use are informed by the public. We therefore want to make sure that patients and the public are meaningfully involved in the development and ongoing delivery of this important study to respond to COVID-19. The fast-moving pace of the Data and Connectivity National Core Study has meant that we are rapidly adjusting and improving our patient and public involvement as we progress. 

 I am the Public Engagement and Involvement Officer for the Data and Connectivity programme. My role is to embed the patient and public perspective in what we do and help ensure that our work is transparent and accessible to the public. Since the beginning, a Lay Member, Margret Rogers, has sat on the weekly Delivery Group, to monitor study developments, raise questions and concerns, and ensure that meaningful transparency is an essential component. Gaining and keeping public trust relies mainly on confidence about access to, and use of, data, as well as ensuring that public benefit is the reason for all actions.  

For example, we were advised that to increase the transparency of the descriptions of datasets on the Innovation Gateway HDRUK needed to create lay and accessible summaries of datasets. We are currently conducting a survey of patients and the public for their views on what is most important to know about a dataset so that we can create a guide for data custodians to direct them on what to include in these summaries.  

 “Transparency and trustworthiness in the use of our health and social information is as important as making this information ready to be used to bring the much-needed solutions to the problems caused by the Covid-19 pandemic. Involving members of the public, when and where decisions are made, helps make sure we keep on target in the proper use of our information for public benefit.” (Margaret Rogers, Lay member Data & Connectivity Delivery Group) 

 HDR UK identified the need for additional input from patients and the public as the programme rapidly developed and worked to recruit an additional Lay Member to sit on the Delivery Group. Alongside Margaret, their role is to ensure that there was adequate Lay Member representation and to bring a wider perspective.  

 “As a new lay member, I am enthused by the passion and drive shown by everyone involved.  The collaborative efforts are impressive in both breadth and depth.  What is more, early fruits are emerging in many of the studies which make many of us dare to look forward to a better future!” (Emily Lam, Lay member Data & Connectivity Delivery Group) 

 The team at HDRUK also recruited three Lay Members to form an Advisory Group to bring a patient and public perspective to the delivery of the programme and to provide advice to the Delivery Group through the Delivery Group Lay Members. The appointed Lay Members, Colin Wilkinson, Della Ogunleye and Chris Monk bring unique skills, experiences and perspectives.    

The Advisory Group meets fortnightly and has the opportunity to review matters discussed in the Delivery Group including programme priorities as well as provide feedback on a range of activities. For example, most recently the Lay Members from both the Delivery Group and Advisory group reviewed and provided feedback on lay summaries and patient and public involvement plans from each of the 12 successfully awarded rapid funding call research projects. The Advisory Group will be working with the Delivery Group Lay Members and HDR UK staff to develop an overarching public and patient engagement and involvement strategy for Data and Connectivity.  

 A central priority has been to ensure that the input we are getting on the patient and public involvement activities we do is meaningful and impactful. We are constantly working to ensure that we can take on board the feedback we receive and use it to shape all elements of the programme.  

 “Our lay members and the increasing number of the general public who responds to specific engagement activities are vital in ensuring our focus on public benefit and transparency.  The lay member contributions at the weekly delivery group are shaping how we prioritise activities as well as how we communicate effectively in this fast-moving environment.”  (David Seymour, Chair of Data & Connectivity Delivery Group) 

To read more about our patient and public engagement please visit here 

HDR UK Voices is our growing network of people who want to use their voice to influence and shape our work, sign up to the network here