Whenever we use healthcare services, we generate information which could help improve care in the future. How do we harness this data without compromising confidentiality? Media Fellow Howard Ryland finds out.
Data does not immediately suggest itself as an exciting topic. Enter Dave the data item and friends, who challenged this notion at the British Science Festival in Swansea. Dressed as a jigsaw piece covered in strings of binary zeros and ones, Martin Heaven, Senior Research Analyst at Swansea University Medical School, aka Mr Dave Item, took us in to the brave new world of big data.
Since the middle of the last decade, every GP in Wales has been equipped with a computer. Every interaction between patients and health professionals generates information that combines to create a vast swirl of facts and figures. If this information could be accessed, it could provide a powerful tool to understand the needs of patients and point to how services could be improved.
But there is a problem:how can this ‘big data’ be unlocked for research in a way that does not share people’s personal information inappropriately?
One solution is SAIL, or the Secure Anonymised Information Linking database, to give it its full title. With help from willing members of the public and enormous jigsaw puzzles, Dave elegantly demonstrated how clinical data can be anonymised for use in research.
The key is to use a trusted third party, in this case the NHS Wales Information Service, to replace the identifiable patient information with a code. This unique numerical identifier allows all of the pieces of each patient’s ‘puzzle’ to be linked together. This means that if someone visits their GP, requires tests and needs to be admitted to hospital, all of these episodes can be linked together.
So what you might ask. Alison Porter, Associate Professor of Health Services Research at Swansea University, demonstrated the potential of SAIL by introducing the PRISMATIC study. This is an evaluation of the effectiveness of the PRISM system, which enables GPs to identify those patients at the highest risk of needing an emergency admission to hospital using over 30 parameters. 32 practices participated, with data from 248,721 patients included. The results are hotly anticipated and look at whether it does reduce emergency admissions, as well as its impact on use of services, costs and quality of life.
Kerina Jones, Associate Professor of Health Informatics at Swansea University, presented how her work with the Multiple Sclerosis (MS) Register could provide insights in to the mental health of people with the disease. Using data from thousands of records, the Hospital Anxiety and Depression Scale (HADS) was used to determine how common anxiety and depression are this group and who is more at risk of developing these mental illnesses in addition to their MS.
Using scales made from sandwich trays, in true Blue Peter style, Dave visualised the exquisite balancing act between data utilisation and data safety. The debate continues about where exactly this equilibrium lies. What is clear is that if we can get this right, we can mine the rich seams of big data and convert the ever-increasing pool of clinical information into system-wide benefits.
Dr Howard Ryland is a Wellcome Trust Media Fellow, placed at the Londonist. He is a Higher Specialty Trainee in Forensic Psychiatry at South West London and St George's Mental Health NHS Trust.
Image credit: Ken Teegardin via Flickr