Even if we got it, what would we actually do with our patient data?

Even if we got it, what would we actually do with our patient data?
Alexandra Eavis
Alexandra Eavis
July 12th 2018

At Dovetail, we are currently working on an NHS England project which goes some way to giving patients control over their patient data so they can better manage their own care. The plan? To elevate the patient from their current status as powerless data subject, with their patient data sat in siloed repositories controlled by various data controllers like the GP or hospital. Giving patients the power to request, by giving or revoking their explicit consent, for their data to be shared in an electronic format (thanks GDPR for getting rid of the paper) with whoever they wish. We hope this will be a game changer and enable the digital-first NHS that many politicians, patients and practitioners want.

But what will patients do with their data once they can access it?

Data sharing today

For health services, providing good quality care often relies on having access to timely and accurate clinical information. The NHS largely relies on implied consent for direct care, meaning when you turn up for an appointment it’s implied you’ve given your consent for someone to access your record. Due to interoperability issues with current systems, this type of information sharing works to a greater or lesser extent, often dependent on where you are in the country. There are some excellent companies and initiatives working on these interoperability problems at an institutional or local level: Orion Health, Mirth, The Ripple Foundation, The Discovery Project. However, most of these data sharing relationships are all intra-organisational, specifically within the NHS, and rely on organisations that share data having met extremely stringent, time consuming and costly NHS information governance requirements PLUS the drafting and entering into of lengthy information sharing agreements. Unfortunately, this red tape is often prohibitive for small organisations and results in data staying put. Information governance can very easily kill good intentions.

One of the problems with the current set up is that patients don’t know who has access to what data as the current system is very opaque. De-identified data can be shared for research and development without the patient being aware. There is an opt out system but it’s not comprehensive, and previous opt outs have not always been honoured. The health data of 150,000 patients was wrongly shared for up to three years, after opt-out requests were not sent to NHS Digital following a GP system supplier “coding error.”

Data sharing tomorrow

Digital Personal Health Records (PHRs) are on their way. Jeremy Hunt, the longest serving Secretary of State for Health, will not oversee his plans for a digital-led NHS in action. But with new Health Secretary Matt Hancock now in charge, the NHS app will be delivered in beta testing in September and available for public use by December. As well as systems like Evergreen Life and Patients Know Best which give patients access to their record, two of the three dominant GP system suppliers has their own patient facing application: EMIS Patient Access and Systm Online.

The functionality people use most on these apps is the appointment booking and repeat prescription services. So are people even interested in seeing their data? Let’s face it, for most people, looking at when they got their last Amoxicillin prescription isn’t going to be that interesting. So, it’s what you can do with the data that’s going to the game changer. These are some of the things we predict people will find beneficial: Better customer experience – sharing data relevant to the user automatically through a few taps in an app rather than having to fill out a long form. Whether it’s going to see a private practitioner, a community group or even visiting a sports facility, your data can go with you, and you don’t have to remember when you had your last jab. It should be that easy. Better engagement with digital health and wellbeing apps – rather than having to enter all the data yourself, pull your data from your GP record and push measurements you take at home back to the GP. No more waiting room syndrome high blood pressure readings because you can do it at home. Meaningful engagement with your clinicians and fewer visits to GP surgeries or hospitals. Better placed to manage conditions from the comfort of your own home. Better patient engagement in their own care, and a more holistic view of health over time, from which to make shared decisions. Save money – pass data on to insurers or finance providers at point of sale and benefit from lower premiums on products ranging from mortgages to life insurance. Get personalised health insurance policies from companies like Vitality who will provide you with free tools bespoke to your medical history to stay healthy for longer. The greater good – share your data with researchers trying to find cures for life threatening illnesses or the answer to eternal life. Choose what you feel comfortable with and share as you see fit. Monetise your data – if companies or research organisations want to offer you payment to use your data, it’s up to you to decide whether the incentive is sufficient. Remote health checks - for example, insurance companies already use ‘health care scores’ which are very similar to a credit score. If you could make your records available for analysis, you could easily receive back your score and how to improve it.
Ultimately, it’s your decision what you do with it. So why don’t we just go ahead and make this possible?

It’s all about trust

Trust is the issue to overcome when we look to deliver the above step changes and exactly what we are looking to do at Dovetail Lab. There is a big disparity between people’s desire for data to be shared to deliver better healthcare and their wariness of the technology that can make this happen. 92% of people are happy for health records to be shared between different parts of the healthcare system but the vast majority of patients are unsure about the security measures of new health tech companies and health apps to protect their data. The majority believe that health apps (80%) and healthcare technology (84%) should not be allowed access to patients’ records, with nearly half of patients saying they do not trust online health companies (41%) and healthcare apps (44%) with their healthcare data (https://www.pwc.co.uk/press-room/press-releases/majority-of-public-have-never-accessed-their-own-health-records.html).

Technology is the only way to make data sharing happen at all, plus make that sharing sufficiently safe and secure. As with healthcare practitioners, and their Hippocratic oath, the onus is on technology companies handling patient data to be upstanding, ethical and accessible so that patients trust us. Transparency here is key – most people are happy to share their data if they are asked. It is it being shared without their knowledge that upsets them and breaks down trust. So not only do we have to ask patients for their explicit permission to share data, but we have to audit the data exchanges and give people visibility of who accessed what data and when. Only when data is shared for the good of the patient, and patients can see this for themselves , will they really trust those who make it happen.