Meet our featured member for April... Will Dixon
Will is a Founding Fellow of the Faculty, a Consultant Rheumatologist at Salford Royal Foundation Trust and a Professor of Digital Epidemiology at the University of Manchester. The Faculty spoke with Will about how his career has progressed, the work he is doing at Manchester, and his thoughts on epidemiology and COVID-19.
Hi Will - please can you introduce yourself and let us know what your current role is?
I am a Consultant Rheumatologist at Salford Royal Foundation Trust (1 day/ week) and a Professor of Digital Epidemiology at the University of Manchester. I am also the Director of the Centre for Epidemiology Versus Arthritis, a national Centre of Excellence in musculoskeletal epidemiology. At the intersection of these roles, I’m particularly interested in how we can collect research-quality data from both clinicians and patients to facilitate population health research, answering clinically important questions to improve the lives of patients living with arthritis and other illnesses.
How did you begin your career in informatics and how did you get involved in digital health/eHealth?
My research career began analysing data from a national drug safety register, examining the safety of biologics drugs in patients with rheumatoid arthritis. In 2000, this was a new class of drug with major benefits proven in clinical trials, but where there were concerns about long-term safety given the physiological role of TNF. The BSR Biologics Register aimed to recruit all patients with RA starting on anti-TNF therapy nationally, with paper forms being sent by doctors, nurses and patients to a research database in Manchester. The research answered many unknowns about the safety of biologics for patients and clinicians internationally, but I was left thinking that in the 21st Century the data should be available from routine clinical electronic health records, without requiring the set-up of a bespoke research register. Since then, I have been focussed on how technology can support both clinical care and research.
My initial research in eHealth was answering drug safety questions using deidentified primary care electronic health records (for example, about steroid safety using the Clinical Practice Research Datalink). As a rheumatologist working in a hospital, however, I was keen to work towards collecting research-quality data within outpatients. This has led to defining core data to support clinical care and research for rheumatoid arthritis across Europe that we are now implementing within the electronic health record at Salford.
Even with excellent electronic health records, it is not uncommon for important patient information to be absent. With the increasing uptake of smartphones, it is possible to rethink how we can collect information directly from patients - integrated into their daily lives - that can support clinical care and research. Examples of my recent work in this area include:
- REMORA (Remote Monitoring in Rheumatoid Arthritis). A pilot smartphone study at Salford where we successfully integrated symptom data tracked every day over three months into the electronic health record. The symptom graphs visible during consultations demonstrated the transformative value of having a clearer picture of changing symptoms between clinic visits.
- Cloudy with a Chance of Pain. A national smartphone study with >13,000 participants, testing the age-old belief that weather influences pain in people living with arthritis and other long-term pain conditions.
What informatics developments are you currently working on at the University of Manchester, and what informatics developments would you like to see in future? (even if all COVID-19 related!)
We are currently expanding our smartphone symptom tracking study REMORA to build scalable infrastructure. This will allow the recommendation of symptom tracking by clinicians within a usual consultation, followed by the patient downloading an app and completing user authentication using NHS Login. The data will then be transferred to a patient-generated health data repository where it will be graphed, with a view onto the data from any electronic health record. We are applying to NIHR for funding to evaluate the clinical benefits of the system in line with the NICE framework for digital evaluations.
We are about to launch a programme grant called ‘Assembling the Data Jigsaw’, funded by the Nuffield Foundation and Versus Arthritis. Research using routinely collected health data can answer key questions, but in MSK disease, progress in answering these is often hampered by availability of the right data. This can be for three key reasons. First, despite all the necessary data items being in existence, these data items are not yet available altogether in the same dataset. Second, data are not formatted in a way that makes them amenable for research. And third, the data items do not yet exist within the health and social care system. This project will address these challenges by assembling a data jigsaw: collecting, processing and linking data from different sources. This will include collecting data directly from patients using touchscreens in outpatients, processing unstructured data using text-mining of outpatient letters, improving the prospective collection of coded structured data in rheumatology clinics, and linking primary, secondary, and social care data for research.
I hope that in the coming years, we will move towards an efficient and transparent system for sharing routinely collected health data for research in a way that builds and maintains public trust. Our community is recognising the importance of robust infrastructure like data safe havens. Equally important is the requirement to have a transparent and ongoing discussion with the communities that we serve to explain clearly the benefits and managed risks of such research, as well as providing reassurance about who accesses the data, and for what purpose within the legal and secure governance framework.
The current situation with COVID-19 has clearly become the focus of epidemiologists across the country, and digital epidemiology feels particularly relevant. What are some key things that you have learned so far that you think our members would be interested to know?
The Covid pandemic is a good example of how technology is opening new opportunities for data collection to answer questions of public importance. The Covid Symptom Tracker is an example of data being collected from the public at scale, with contract tracing, or proximity sensing, potentially following on soon. The world of digital epidemiology is expanding quickly – and it requires the scientific rigour that all prior eras of epidemiology have needed. Developing robust insights from observational data requires us to consider carefully all of the fundamental principles of epidemiology, such as measurement tools, validity and reliability, selection and information bias, and confounding. Forgetting these principles may lead to false conclusions, so we need to be careful in our interpretation of the results that will come our way soon.