IoT in health and social care creates 'puzzle of data and consent'

Debate over smart healthcare consent coincides with pilots being postponed

People with dementia and Alzheimer's may be unable to give informed consent for smart devices to be installed in their homes, as well as for how their data is used by companies, according to experts.

Discussing the role of the connected home and Internet of Things (IoT) in health and social care in the home, a panel of specialists at tech industry trade body techUK's Connected Home event spoke about the challenges tech and healthcare face.

Jeremy Green from Machina Research, who led the panel, asked: "What does it mean for somebody in their 80s to even consent? Can they give informed consent as to what can be done with their data and, if they can't, should you do stuff with it anyway?"

As older people are less likely to adopt the latest smart technology, smart home devices such as those being pioneered in the health and social care sector could pose various regulatory problems.

"If we've got a connected environment around the person, can that more predictive, proactive behaviour be instilled in a system that still passes regulatory scrutiny?" added Steve Sadler, CTO at healthcare tech firm Tunstall.

"These systems already exist but the problem today is that they tend to exist in silos. You've got silos of telecare systems, telehealth, smart metering.

"This is the tricky part of the equation for me. [When] we know that we have informed consent then we can build really smart solutions for some very vulnerable people."

In February, it was reported that the NHS could face compulsory Data Protection Act audits from The Information Commissioner's Office (ICO) following a change in the law. This involves checks on how patients' personal data is secured, recorded and shared as well as the level of staff training.

Tim Kelsey, national director for patients and information at NHS England, previously claimed that collecting patient data is a moral requirement in order to fill "dangerous" knowledge gaps.

Speaking about the benefits of such technology, Stephen Hope, business development manager and telecommunications consultant at Docobo, added: "The connected home doesn't necessarily directly effect the health of the person, but telehealth is very much about symptomatic data, i.e. 'how do you feel?', and the whole connected home idea is where you can actually get behavioural data.

"Changes in behaviour, often very small changes in behaviour, can be detected through the connected home."

Those most at risk may be the hardest to reach, however, as elderly people without friends and family to support them can also become very costly for the NHS in the long run. The industry thus needs to work together in order to reach those who are alone, said Janet Jadavji, CEO of mHealth software and hardware provider Yecco.

"It's all about the way we communicate with people," she said. "It's not for us to put anything upon somebody, but it's about choice. If you've given that choice and they say they don't want it then that's completely up to [them].

"The challenge is with people with Alzheimer's or dementia - that's going to be one of the bigger struggles."

Earlier this summer, Martha Lane Fox was hired to help the NHS boost adoption of digital technology among patients. This followed news that the scheme, which aims to share anonymised patient records between GP surgeries around the country, lacks the trust of the public.

One of the largest barriers to scalability for connected healthcare is this "complex puzzle of data and consent", added Sadler. "Solve that and I think you're lifting the bar on the whole IoT, telecare puzzle."

The debate came on the same day as the scheme today had its four pilots paused as health secretary Jeremy Hunt ordered the NHS to come up with new opt-out and consent models to allay public fear over the programme.

He said: "The NHS has not yet won the public's trust in an area that is vital for the future of patient care. Nothing matters more to us than our health, and people rightly say we must be able to assure the security of confidential medical information."

One of the pilot areas, Somerset, had 56 of the county's 75 GP practices volunteer to trial the scheme, meaning all will have to postpone their pilots until Dame Fiona Caldicott - England's 'data guardian' - has approved a new consent model.

NHS England's patients and information director, Tim Kelsey, said: "The new measures announced will strengthen the public's confidence in the security of their data.

"We recognise that patients have concerns about data safety and we will do everything we can to protect their information and build their trust. It is imperative we listen to the public and address all their concerns."

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