Public Perspectives on "Big Data"
Terry Bryant, the new Public Adviser Co-lead for the Applied Research Collaboration North West Coast, gives his take on a recent public session discussing "Big Data". GroundsWell will be using this going forwards to shape our data practices.
Hello, I am Terry Bryant, the new Public Adviser Co-lead for the Applied Research Collaboration North West Coast, Care & Health Informatics theme.… or ‘ARC NWC CHI PA Co-lead’ for short! I guess acronyms are a hazard of this environment, but there are a lot!
My background includes a period running my own business and, more recently, I was a teacher but when Covid happened my role as a carer led me in a different direction. Building on my interest in mental health and health equity, I support trainees and academics at Liverpool University on their Doctorate in Clinical Psychology programme as a Carer EbE (Expert by Experience) and I have also become involved in a variety of other NHS/university led projects.
The first hurdle was to get my brain around the wonderful world of data, specifically Health Big Data. It looks a simple equation – the more data and the more accurate that data, the greater the probability of quality research and, in turn, high quality research can lead to informed and better decision making. The potential of bringing health data together and making it available to various elements of the health care sector and also to trusted academic researchers is simply astonishing – a greater understanding of diseases and disabilities, newer and better treatments, improved health services, and addressing health inequalities and inequities for starters!
So far so clear, except……..
We live at a time when technology, specifically AI (Artificial Intelligence) with its potential for machine learning, is accelerating at an exponential pace leaving public understanding and comprehension of its implications behind in its wake. However, health data is deeply personal and gets to the core of who we are as human beings, so issues such as who controls the system, how secret is our personal data, who gets access to our data and how can we ensure health inequities are addressed are all questions crying out for answers, at a time when we barely understand the questions!
With all this in mind, the CHI team developed their contribution to the recent ARCFest. Our aim was to be informative, give a balanced introduction and bring together diverse groups of people (academics, health practitioners, public advisers and others) to understand each other better and to grapple with some of the issues.
We met in The Lighthouse, an old cinema close to Anfield (their last screening was the movie Frozen - that title foreshadowing the challenging temperature of the venue!). Anyway, after a brief overview of the debate, we split into tables to address two key questions – what health areas could benefit from analysing health big data and for other tables what objections might be raised.
Five main themes came out of these discussions:
- There are immense health benefits that could be developed from analysing health big data.
- Data security is a major concern – could commercial organisations exploit our data, and what about data breeches and misuse?
- People need to be alerted to the option of opting-in/out of sharing their health data.
- Health big data may hold potential but there remain questions about the quality of the data.
- We must recognise that this is not a panacea for all healthcare issues.
In the discussion everyone engaged with these complex, elusive and difficult subjects - we could have gone on debating the issues for another hour or more! By the way, any and all feedback on the day is most welcome by the ARC CHI team, please email us at email@example.com
One thing is for certain, technology is not going to pause while us mortals catch up! AI and machine learning is here, now, and it is important we make sure the structures for storing and sharing health big data are developed and constructed for the common good, and also that the public voice is present and heard in the governance of health big data.
In the meantime, I had better get back to reading some more of the zillion articles about big data!
Terry Bryant, ARC CHI PA Co-Lead