To share or not to share: delving into health data research.

In January this year I made a bold move, well at least bold for someone who is often accused of being painfully risk averse. I waved a fond farewell to life in the lab to take on a new role where I have been able to combine my training as a researcher with my passion for science engagement. In this role I work closely with health researchers and the public, building the scaffolding needed for the two to work together and co-produce research which may improve healthcare for millions of patients across the UK. The group I work alongside are collectively known as the Health eResearch Centre (part of the world-leading Farr Institute for Health Informatics) and are proud in their mission of using de-identified electronic patient data* to improve public health.

For me, taking on this role has felt particularly poignant and has lead me to think deeply about the implications and risks of sharing such personal information. This is because, like many of you, my health records contain details which I’m scared to share with a wider audience. So, with this in mind, I want to invite you inside my head to explore the reasons why I believe that, despite my concerns, sharing such data with researchers is crucial for the future of public health and the NHS.

It’s no secret that any information stored in a digital form is at risk from security breaches, theft or damage and that this risk increases when information is shared. But, it’s also important to recognise that these risks can be significantly reduced if the correct structures are put in place to protect this information. Not only this but, when weighing up these risks, I also think that it is immensely important to know the benefits sharing data can provide.

With this in mind, I was really impressed that, within the first few weeks of starting this role, I was expected to complete some very thorough data security training (which, considering I won’t actually be working directly with patient data almost seemed like overkill). I was also introduced to the catchily titled ISO 27001 which, if my understanding is correct, certifies that an organisation is running a ‘gold standard’ framework of policies and procedures for data protection – this being something we as a group hope to obtain before the year is out. This all left me with the distinct feeling that security is a major concern for our group and that it is considered to be of paramount importance to our work. I also learned about data governance within the NHS and how each NHS organisation has an assigned data guardian who is tasked with protecting the confidentiality of patient and service-user information. So, I’m quite sure information security is taken exceedingly seriously at every step of the data sharing chain.

But what will the public gain from sharing their health data?

We all know that, in this cyber age, most of us have quite an extensive digital-data footprint. It’s no accident that my Facebook feed is peppered with pictures of sad dogs encouraging me to donate money to animal charities while Google proudly presents me with adverts for ‘Geek gear’ and fantasy inspired jewellery. I don’t make too much effort to ensure that my internet searches are private, so marketers probably see me as easy prey. This type of data mining happens all the time, with little benefit to you or me and, although we may install add blocking software, few of us make a considered effort to stop this from happening. Health data, on the other hand, is not only shared in a measured and secure manner but could offer enormous benefits to the UK’s health service and to us as individual patients.

Our NHS is being placed under increasing financial strain, with the added pressure of providing care to a growing, ageing population with complex health needs. Meaning that it has never been more important to find innovative ways of streamlining and improving our care system. This is where health data researchers can offer a helping hand. Work using patient data can identify ‘at risk’ populations, allowing health workers to target interventions at these groups before they develop health problems. New drugs and surgical procedures can also be monitored to ensure better outcomes and fewer complications.

And this is already happening across the UK – the Farr Institute are currently putting together a list of 100 projects which have already improved patient health – you can find these here. Also, in 2014 the #datasaveslives campaign was launched. This highlights the positive impact health-data research is having in the UK by building a digital library of this work – type #datasaveslives into Google and explore this library or join the conversation on twitter.

One example is work on a procedure to unblock arteries and improve outcomes for patients suffering from coronary heart disease:

In the UK this procedure is carried out in one of two ways: Stents (a special type of scaffolding used to open up arteries and improve blood flow) can be inserted either through a patient’s leg (the transfemoral route) or via the wrist (the transradial route). Insertion through the wrist is a more modern technique which is believed to be safer and less invasive – however both methods are routinely performed across the UK.
Farr institute researchers working between The University of Manchester’s Health eResearch Centre and Keele University used de-identified health records (with all personal information removed) to analyse the outcomes of 448,853 surgical stent insertion procedures across the UK between 2005 and 2012.

This study allowed researchers to calculate, for the first time, the true benefits of the transradial method. They showed that between 2005 and 2012 the use of transradial surgery increased from 14% in 2005 to 58% in 2012 – a change which is thought to have saved an estimated 450 lives. They also discovered that the South East of England had the lowest uptake of surgery via the wrist.

This work shows one example of how research use of existing health records can highlight ways of improving patient care across the country – thanks to this research the transradial route is now the dominant surgical practice adopted across the UK (leading to an estimated 30% reduction in the risk of mortality in high risk patients undergoing this procedure).

Reading through all these studies and imagining the potential for future research does convince me that, even with my concerns, the benefits of sharing my data far outweigh the risks. But, I also recognise that it is of tantamount importance for patients and the public to be aware of how this process works and to play an active role in shaping research. It seems that when the public have the opportunity to question health data scientists and are fully informed about policy and privacy many feel comfortable with sharing their data. This proves that we need to strive towards transparency and to keep an active dialogue with the public to ensure we are really addressing their needs and concerns.

This is an amazingly complex and interesting field of study, combining policy, academic research, public priority setting and oodles of engagement and involvement – so I hope over the next year to be publishing more posts covering aspects of this work in more detail.

Post by: Sarah Fox

*The kind of data which is routinely collected during doctor and hospital appointments but with all personal identifiable information removed.

 

Save

1 thought on “To share or not to share: delving into health data research.

Leave a Comment

Share This