In conversation with Mark Avery: working with Gut Reaction
Mark Avery, Director of Health Informatics at CUHP and Eastern AHSN, has spoken to Gut Reaction about his role within the hub as Operational Lead. In the latest interview by Gut Reaction, Mark explains all stages of the project, from developing the initial funding application for Gut Reaction, to working alongside the data management teams and its Patient Advisory Committee.
Read the original interview on the Gut Reaction website here.
Please can you tell us a bit about your roles at Eastern AHSN and Cambridge University Health Partners?
I am Director of Health Informatics for Cambridge University Health Partners (CUHP) and the Eastern AHSN (Academic Health Science Network). CUHP and Eastern AHSN support other organisations, including hospitals, research groups and commercial organisations to adopt new innovations and ways of working together to improve patient care. My focus on health informatics means that I am involved in looking at how data from medical records and other sources can improve patient care, and facilitate health data research for the benefit of patients and the wider NHS.
I have spent the last 25 years working in and around health data, predominantly for the NHS, in a range of positions; from my initial role as an analyst to several years in operational, contract and change management, and system redesign. For the last five years or so, I have focused on creating new opportunities for health data research at Eastern AHSN and CUHP.
I often get asked what health informatics is, and for me it is an approach to improving outcomes for patients that combines expertise from information technology, data science, social science, and health and social care professionals. It is a challenging but exciting field, with technical and legal issues to consider when using and organising data from different places to make it Findable, Accessible, Interoperable and Re-usable (FAIR). It is important that these challenges are met to allow researchers to improve our understanding of the mechanisms of diseases, and develop new products and treatments, while also protecting the privacy of participants, providing value to the NHS and ensuring that any research is acceptable to patients and the public.
As the Operational Lead for Gut Reaction, my role has been to organise and support interactions between partner organisations to jointly design and build a model for health data research in inflammatory bowel disease (IBD). Through Gut Reaction we have shown how NHS, academia, industry and charity organisations can work alongside patients to securely bring large amounts data together as a health data research ‘Hub’, creating new opportunities for research and innovation that will improve the lives of people living with IBD.
We can see that you have lots of experience in managing NHS data and large-scale projects, but how did this lead you to Gut Reaction?
Before the national Digital Innovation Hub programme, which Gut Reaction is part of, Health Data Research UK (HDR UK) launched a competition for Sprint Innovation Exemplar Projects to help inform the development of larger HDR UK Hubs. Led by Cambridge University Hospitals, the NIHR BioResource, AIMES (a trusted host for NHS data), and Privitar (specialists in data privacy), we worked with clinical research teams specialising in rare diseases to develop a proof-of-concept secure cloud-based (stored safely on the internet) research environment for combining and analysing NHS, research and genomic data.
This proved to be a very successful model for data access, combining information from medical records with lifestyle, genomic and study data in a secure cloud to support research initiatives.2 The team was recognised as ‘HDR UK Team of the Year’, and the model paved the way for the Gut Reaction Hub. IBD was selected as the fastest growing area of the NIHR BioResource, and there are now 36,000 patients enrolled from more than 100 hospitals UK-wide who have given consent for their health data to be used to support academic and commercial research. IBD is a chronic condition, with no cure, and it can have a huge impact on quality of life. Patients respond differently to treatments, so research is urgently needed to develop more personalised approaches. Ultimately our aim is to make IBD a ‘manageable long-term condition’ rather than one that can have such a negative effect on day-to-day life, work and relationships.
What is a typical day on Gut Reaction like for you, and are there any aspects of the work that you particularly enjoy?
Essentially, my role is to help coordinate activities across the workstreams and organisations involved in Gut Reaction, working with patients so that their views shape how this is achieved. A lot of my time is spent talking with people, listening, and ‘brokering’! From discussions about overcoming technical challenges and ensuring we meet all legal requirements for data use (often known as ‘information governance’), to working with NHS Trusts providing data and commercial organisations who are interested in accessing it, I oversee the collaboration between many expert partners. Health data research is certainly a complex area to be working in, but I admit I really quite enjoy trying to find solutions that work – and then coordinating activities to help make them happen.
One of the most rewarding elements of the project has been working with patients through our Patient Advisory Committee (PAC) on models for data access and sharing, and developing a sustainable business model for the Hub that has patient decision-making about how data are used as a central component.
Gut Reaction is possible because of the generosity of patients living with IBD who have consented to their data being used for research. How important do you think this contribution is for the future?
The contribution of these patients has been crucial! What makes Gut Reaction unique, and unlocks new opportunities for research, is the fact that data from different sources can be linked – for example, allowing researchers to look at genomic information alongside lifestyle and longitudinal health record data. This would not be possible without the permission and generosity of participants who have given their consent for their data to be used to benefit others.
Finally, can you update us on what we should look out for from the Gut Reaction this year?
One of the exciting things to look out for will be the development of a new participant portal, which is being explored at the moment as a great way to enable NIHR BioResource volunteers to engage further with research. It will offer individuals opportunities to opt in or out of particular studies, access insights from their own data, and see which research studies their data has been used to support.
Click to read the full interview by Gut Reaction here.