Sharing Your Healthcare Data Is The Ethical Thing To Do

In March, the NHS Health and Social Care Information Centre (HSCIC) will start collecting patient information from GPs in England for the very first time. It is hoped that the ‘Care.Data’ scheme will enable healthcare professionals to monitor the spread of diseases and the effectiveness of treatments, help cut costs and advance scientific research.

The project is an interesting use of Big Data analytics – and the centre won TechWeek’s Tech Success award for Big Data in 2013. But many patients and even some GPs were quick to criticise the idea, remembering all the past data protection sins of the NHS. They don’t want their data circulated even after it has been anonymised, and for them, the government has created the option to simply opt out.

Health IT experts warn that every person who chooses to withhold their patient records will reduce the effectiveness of Care.Data as a research tool. Gayna Hart, founder and managing director of IT systems supplier Quicksilva says the secure HSCIC infrastructure has been built from scratch, and is a far cry from the legacy systems used by the rest of the health service.

Haunted by the past

The Care.Data scheme promises to respect patient privacy and remove any details that could help identify particular individuals, before the information is made available to interested parties for statistical use.

“Looking at the patient’s whole journey is valuable in so many ways. Research into new cures, epidemiology, proving safety of drugs – it’s all very important,” Hart told TechWeekEurope. “We need this data if we are going to get to the bottom of cancers and heart disease.”

If everything goes according to plan, the scheme will provide a complete picture of healthcare in England. But in order to succeed, the NHS will have to promote its benefits to the public, to win their acceptance. Hart, who has no direct involvement in the Care.Data scheme, says some clinicians have been actively “scaremongering” patients and encouraging them to opt out, but she assures the new infrastructure is completely safe.

“The NHS has a long history: it has transitioned from paper records to systems designed by clinicians in the back-rooms.

“This venture by HSCIC is completely different from the ground up, using the latest technology to provide a safe haven for data. But of course, people’s memories are long and they remember the mistakes. It’s easy enough for the HSCIC to assemble technologists and industry experts in a room and tell us how it’s going to work and we say it’s great, but how do you get that across to the members of the public? That is going to be a challenge.”

According to Hart, the new systems will hold data in secure repositories, and researchers will only have access to the datasets after they been processed using small number suppression and pseudonymisation techniques.

Pseudonymisation replaces identifying information within a data record by one or more artificial markers, keeping it suitable for extensive analytics and processing. It is different from anonymisation, where data is mixed between subjects with potentially the same attributes. Meanwhile, small number suppression will simply prevent access to data samples that are so small they could lead to easy identification.

All requests for patient information will need to be approved by a special committee within the HSCIC, which will decide whether the purpose of the research project fits the Care.Data guidelines.

Every patient counts

Because all residents of England are enrolled into the scheme by default, we are unlikely to see people opting out on a massive scale. But Hart says every patient who leaves Care.Data will have a negative impact the success of the project as a whole.

“I think it skews the sample, because if you are looking at all the people in North London who have a certain disease and trying to find what caused it, you might be missing some key information that could unlock the whole thing.” She adds that the reason it took so long to link smoking to lung cancer was because the two datasets were never compared.

The major point of Care.Data is the intention to eventually offer the data to non-governmental organisations. If pharmaceutical companies are allowed to use this information, it could decrease the time-to-market for drugs and therefore reduce their cost, and the savings could potentially be passed on to the NHS. It could also mean these companies would be more likely to take a chance on developing new treatments.

While supporting organisations like Cancer Research is a no-brainer, not many people would feel so proud about helping GlaxoSmithKline increase its already quite substantial revenues. Hart says that a commercial data service could become a “shot in the arm” for the NHS, but at the moment, there is no framework in place that would allow the healthcare provider to earn money from data. Hopefully, such a solution will emerge in the nearest future.

“We should be proud that the NHS is making such an effort to make this data available for an essential purpose, in a way that is safe,” concluded Hart.

With HSCIC holding TechWeek’s Tech Success award for  analytics, it has our vote of confidence.

Do you remember British IT in the Thatcher years? Take our quiz!