MacFormat UK – June 2019

Health data APPLE CORE

JUNE 2019 | MACFORMAT | 17

medical care – something Apple is keen to
facilitate. Introduced in iOS 11.3, the Health
Records API allows medical data to be passed
between a patient and medics. Apple gives the
example of a diabetes app that can access the
results of clinic blood tests as well as integrating
diet and exercise details via HealthKit,
“allowing for a more complete picture of you.”
Getting Big Brother vibes? Health Records
data is not only encrypted, like other data on
your iPhone, but is also protected by a separate
passcode. Communication via Health Records
goes directly between you and your healthcare
provider, not via Apple. It won’t be available to
ordinary commercial app developers.
Currently, Health Records is still in beta,
with providers signed up so far only in the US.
There are already third-party apps that give
patients direct access to their UK medical
records via systems implemented under
NHS Digital (see top right). Integration with
HealthKit and Health Records would expand
the scope of medical apps from their basic
capabilities to a much more integrated approach
to personal health. But could sharing data with
your doctors bring its own risks?

Self-care
In 2017, President Trump’s budget director was
reported to have told an audience at Stanford
University that the government shouldn’t be
required to take care of a person who sits at
home, has a poor diet and gets diabetes. The
remark was immediately condemned by
clinicians, but not a million miles away from
suggestions that patients who fail to lose weight
or stop smoking should be denied NHS care.
Such proposals create concerns that when
patients’ conditions, behaviours or lifestyle are
monitored, the results can be used against their
own wishes or interests rather than for their

benefit. Some medical insurers already offer

discounts to customers who wear a fitness

tracker and share data that shows what exercise

they’re getting. They may be happy to consent,

but it’s not hard to imagine a day when those

who refuse to be monitored – or are monitored

and found to lie outside preset parameters –

can’t get cover.

Insurance companies don’t dictate how

patients are treated in the UK, but the NHS

will face ethical challenges too. For example,

insulin-dependent diabetic drivers in the UK

are required to notify the DVLA if they suffer

hypoglycaemia while driving or have reason

to believe their risk level has increased. Some

see this as discriminatory – many more likely

causes of road accidents are not formally

monitored, after all – but at least patients and

their doctors can exercise some reasonable

discretion in self-reporting.

As devices for continuous glucose

monitoring – a field in which Apple filed a

patent last year – become more common, could

officials be tempted to move towards automatic

driving bans based on arbitrary thresholds in

patients’ data? Should it be lawful to access

this kind of information without the patient’s

consent, and which purposes would justify it?

Could patients be required to generate and

share metrics or lose their entitlement to

something like a driving licence? It’s arguably

a bigger concern than a risk of apps leaking

data for ad targeting.

As we enter an era of consumerised medical

monitoring, it’s worth thinking about what

metrics you want to share with whom, or to

bring into existence at all. Apple is certainly

doing its bit to protect your medical data, but

you’ll want to be sure you know the intentions

of those you choose to give access to it.

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NHS Digital >

Should it be

lawful to access

this kind of

information

without the

patient’s

consent?

In the NHS, digital patient records

were meant to be handled by the

Care.data project, which collapsed

in 2016. This was intended firstly

to make patients’ records available

wherever they were being treated,

and secondly to enable mass access

to data for medical research. The

latter raised controversies about

privacy and consent that remain

difficult to resolve. Currently, access

to records is managed by a non-

departmental public body, or quango,

known as NHS Digital.

In the US, which has no national

health service but a similar need for

electronic health records, systems

are coalescing around an open-

source standard, FHIR. This is the

basis of Apple’s Health Records and

is also used by NHS Digital, which

should facilitate take-up in the UK.

Medical records on your iPhone

could prove life-saving in the

event of an accident.

What if the data from a medical care app went on to affect
your ability to get insurance cover or a driving licence?

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