Eleanor Sherwood weighs up the benefits and concerns of health data ahead of our upcoming TalkScience event
Current government initiatives such as the 100,000 Genomes Project and care.data aim to revolutionise biomedical research and how our healthcare is delivered. However, concerns have been raised regarding the safe, practical and ethical use of personal health data. Are these risks outweighed by the possible benefits to research, NHS governance and your healthcare? On Tuesday 15 March, we will be holding our 32nd TalkScience event to discuss these issues and more with our expert panel including Sharmila Nehbrajani OBE, Professor Liam Smeeth, Peter Knight, Sam Smith and a public audience. If you would like to join in with this discussion, book tickets (£5) via our What’s On page.
What’s the plan?
By 2020, the government aim to make most patient health records electronic, resulting in a paperless NHS. Under the care.data programme, data on these records, from date of birth to diagnoses and postcodes to prescriptions, are intended to be shared across all of NHS England. Research institutes, medical charities and pharmaceutical companies may also request access to this data. This process was initially attempted in early 2014; however controversy surrounding the communication of the scheme halted proceedings. The care.data programme is now being trialled using existing electronic patient records in 'pathfinder' regions of the UK before any national rollout.
The 100,000 Genomes Project is a research-based initiative funded by the Department of Health. Its main aim is to sequence the entire genome of up to 70,000 volunteers, many with rare genetic diseases and cancers. Using this approach, scientists hope to identify genetic mutations underlying these conditions and use this data to research new, personalised therapies.
Faster, stronger, better
Using approaches such as these, the NHS hope to provide faster diagnoses, improved, personalised care, and targeted NHS funding; all of which should combine to make the NHS more efficient, streamlined and progressive.
What’s the problem?
Dealing with data
Generating large quantities of data is relatively easy. However, concerns have been raised about the practicalities of actually using the data. For example, what kind of computer systems and analysis tools would be needed to make large sets of data ‘user friendly’ for GPs and other healthcare workers? On average, GPs spend 8-10 minutes with each patient – would accessing these large files at each appointment increase this time and reduce the availability of GP appointments? Or would this be saved by not having to rifle through stacks of paper medical records?
Safe and secure?
Computer hacks and data security breaches occur regularly; banks, governmental organisations, mobile phone and insurance companies have all been recent victims to this. One of the USA’s largest health insurance firms, Anthem, was hacked this time last year exposing the personal data of almost 80 million people. Could this happen in the UK? What ramifications could this have? What security systems does the NHS have in place to prevent this?
In terms of patient privacy, the NHS say that all data will be pseudonymised, meaning that any names will be replaced by numbers – but is this enough? Can a person be identified based upon their medical records alone? Aside from this, can we justify the fact that numerous people and organisations, some of whom will not be directly working towards the betterment of your personal health, will have access to your data?
Keep it consensual
Reassuringly, both the care.data program and 100,000 Genomes Project require consent from patients, but in the light of previous controversy surrounding care.data, how this consent is acquired is highly important. Also, how can the government/NHS effectively communicate the nature and intentions of these schemes to the public? Full consent is not possible if a person isn’t completely aware of what they are consenting to. Furthermore, the way that data is used in scientific research can be complex and evolve quickly – so is it always possible for a participant to know exactly what they are consenting to? What about potential future applications of their data?
To discuss these topics and much more, book tickets (£5) via our What’s On page.