By Patrick Vickers on 27 September 2016
How do we change perceptions on NHS data sharing? Show the benefits.
With the embarrassing failure of the care.data scheme and the latest Caldicott Review stressing patients’ right to opt-out as sacrosanct, it feels like we’re little further forward on the promise of an NHS supercharged by data sharing.
But amid the gloom, there are reasons to be cheerful. On the ground, health innovators are getting on with job of delivering for patients, using data to improve their experience of care. The problem is, you wouldn’t necessarily know this from the sometimes confusing and contradictory messages from the likes of NHS England or the newly-minted NHS Digital (ex-HSCIC).
Alleged public distrust over uses of personal health data has been a consistent thorn in the side of the those aiming to realise the potential of digital health in the NHS.
This appeared to be borne out with the hostility shown towards care.data, with 1.5 million people opting out of sharing their records.
But what are people really opposed to? Sure, they’re opposed to the caricature of nasty insurance companies snooping on their health records to ramp up their premiums or sell them more stuff they don’t need.
But in reality, the evidence suggests that most people’s knowledge of the benefits data sharing can bring to healthcare is so scant it’s perhaps little wonder their kneejerk response is hostility.
The “data trust deficit”
Research for the Royal Statistical Society carried out by Ipsos MORI recently uncovered a “data trust deficit”. People systematically trust organisations less with their data than they trust the same organisations overall.
Interestingly, 78% of Britons feel that data-sharing with companies has no public benefit, and data will only be used by private firms for their own gain. Although a large majority (70%) are comfortable with their data being accessed by hospitals and GPs for health reasons, 84% say health data should not be sold to private companies.
However, these negative views are mostly uninformed hunches – the majority of Britons have little to no idea about how the data is actually used. Only 33% have heard “a great deal” or “a fair amount” about how the NHS uses health data. This number falls to 16% when people were asked about their knowledge of private companies’ use of data. This means that although people are not comfortable with the idea of their private health data being used by companies, they have rarely actually heard the positive case for why this is necessary or desirable.
It’s also worth drawing a parallel between this level of suspicion and people’s apparent willingness to share sensitive data such as banking information online. The difference comes down to the perception that we exchange data with banks, airlines and the like to get some sort of tangible benefit as a result.
How to reach out to the doubters?
A large emphasis of the most recent Caldicott Review was on the need to broaden the public conversation about the use of health data, so the benefits and privacy issues are better understood. At NHS Expo this year, Health Secretary Jeremy Hunt claimed that by next March, the NHS will publish a “library of approved apps” that collect personal health records (PHRs) and start linking the information collected to NHS medical records. It’s nice to aim high, of course.
But by focussing NHS communications around “apps”, it’s perhaps a case of preaching to the converted. To ensure that health data is useful at the population level (for example, for studying trends in diagnoses or treatment effectiveness) it needs to be representative – and that means reaching out via comms activity to those groups that are simultaneously the most sceptical on data sharing and the least tech-savvy, such as the over-65s (who also use the vast bulk of NHS services).
To broaden the conversation, NHS England must engage with the innovative healthtech firms that are already using data effectively to improve healthcare. A clear understanding of the benefits of some of these data-driven services would be a strong step towards alleviating fears.
For instance, Digital Life Sciences, working as part of the much-feted Modality partnership in Birmingham, created a clinical contact centre for a local population of 60,000 people which connects patients and clinicians using the web, phones or apps such as Skype. Instead of booking weeks in advance or queuing at the emergency surgery, patients book calls with a GP which are often same-day and on average last only five minutes. Remarkably, 70% of these calls are dealt with remotely, freeing up doctors to deal with more complex patients who need more attention. All of this, of course, is predicated on efficient use of data.
Likewise, Cloud2 has developed a platform, Kinesis, that allows GPs and hospital consultants to have an electronic “conferral” – a digital discussion about a complex diagnosis where an expert opinion can make all the difference. This example of effective data sharing is saving patients hospital visits by providing answers in primary care. But it has the added benefit of saving the local health economy money, with one London CCG saving nearly £300,000 in a single year from avoided referrals.
There are numerous other examples happening right now of data sharing providing this kind of real-world benefit to patients. It’s now up to NHS England and its various agencies – notably including NHS Digital, with its now expanded remit for delivering the visions around data sharing and interoperability at the heart of the Five Year Forward View – to start ‘crowdsourcing’ some of these best practice case studies and communicating their benefits to the public at large.
A crucial part of this will be about choosing the right channels to bring information to the attention of often hard-to-reach audiences. Some of it may be through traditional media relations or social media campaigns. But it also means reaching key intermediaries such as GPs and consultants, whose authority with patients mean they are often best placed to convey messages in a way that is likely to be trusted and acted upon.
Patients aren’t stupid and they’re right to expect a quid pro quo from sharing their data. By taking the narrative away from esoteric arguments around information governance and focusing instead on the real-world benefits to them, we can overcome the scepticism so that health data sharing becomes normalised as in so many other areas of our lives.