Unleashing the power of the digital patient

By Richard Vize

Digital healthcare technology has extraordinary potential to support patients in self-management of their health. But making this a reality depends on the NHS rethinking its approach to both digital skills and the relationship between clinicians and patients, while the tech sector needs to develop a far deeper understanding of patients’ needs.

The challenge of managing a long-term condition

The patients who stand to benefit most from the thousands of health apps coming onto the market of those with long-term conditions. While patients diagnosed with a long-term condition will be given guidance on how to manage it, each patient ultimately has to find out for themselves how their health and well-being responds to factors such as diet, and how to fit management of their condition into their everyday life. This can take years of trial and error.

Jonathon Hope, who has lived with kidney failure since childhood, told the DigitalHealth.London Summit in February: “When I was diagnosed I was given 60 sheets of what I could and could not eat. There is no way I was going to be able to embed that in my care.”

Artificial intelligence offers the prospect of cutting this learning cycle down to months or even weeks by linking information on a patient’s physical and mental state and learning which actions enhance or harm their quality of life.

“If you’re put on a diet which restricts fluids to 200ml a day, you learn over years [how to do it]. This is the difficult part, but it is where digital health solutions could really help.”

Building solutions around patients’ lives

To be effective, health apps need to take a ‘whole life’ approach, to meet all of a patient’s information needs; applications which only address one or two aspects of their condition are of little help.

Pharmacist and patient advocate Mark Duman is always looking for technology to help manage his own long-term condition. He said: “There are too many single-point solutions. My first question to companies is ‘you have a solution, but is there really a problem? Ask the consumers if your solution solves their problem’.

“I don’t want something looking at just activity or just diet, I want everything combined in one space, including access to my medical records and my diagnostics. I want a single go-to app.”

The technology needs to support mental as well as physical health. Hope said that after taking 10 years to work out how to manage his mental health his use of healthcare fell by 75%. His experience is backed up by clinical studies. A care management tool for both physical and mental well-being cited by the Nuffield Trust reduced A&E attendances by 71% and acute admissions by 83%. Average care costs were more than halved.

Overcoming literacy barriers

Duman said that patients are being inhibited from using health apps because of poor literacy in both personal health and digital healthcare technology. He cautioned against assuming that providing everyone with digital skills was the answer.

“Digital is a bit of a red herring. We have had paper-based information distributed for years as well as NHS Choices and patient groups.

“In the UK we have rights-based healthcare more than responsibility-based healthcare. We have a tendency to think the NHS will pick up the pieces; we don’t know what it means to be involved in [our] healthcare.”

He believes the NHS needs to take every opportunity to reinforce the message of personal responsibility, and favours scrapping the ‘friends and family’ test in favour of asking “as a result of this intervention are you now more able to manage your own health?”

But the lack of digital skills and access to the right technology still leave many people with little prospect of experiencing digital’s life-changing potential. A study cited by Age UK revealed that only 3,000 out of almost 18,000 care homes in England provided internet access, while 12.6 million UK adults lack any digital skills – often the people with the greatest health inequalities. Organisations such as Tinder Foundation and Doteveryone are dedicated to getting people online, but progress is slow.

But age is not a barrier. Data presented to the summit by Silicon Valley physician and tech entrepreneur Dr Jordan Shlain showed there is no age limit in using health technology.

The vital role of clinicians

Often the biggest barrier is clinicians. A West Midlands Academic Health Science Network study found that poor understanding among doctors, nurses and commissioners of what technology could offer patients was holding back adoption.

A survey by Medscape in the United States exposed differences between doctors and patients about whether patients should be empowered to use technology. While 39% of patients said they would like to use smartphone apps to self-diagnose non-life-threatening medical conditions, only 18% of physicians agreed. Only 58% of physicians agreed with the statement “new technology must be mastered to remain up-to-date”.

While a growing number of patients are finding their own way through the technology maze, most people still depend on clinicians’ advice. Turning every clinician into an informed digital advocate is crucial if the NHS is going to exploit its potential.

As Bob Gann, digital inclusion lead for NHS Digital, put it: “Patients do not need to have clinicians validating their use of digital tools, but for patients who are not digitally confident it can really make a difference.”

When the Health Secretary Jeremy Hunt asked US physician and technology expert Robert Wachter to review the health service’s digital strategy, a key recommendation was for Health Education England and the Royal Colleges to raise the level of digital education for all health professionals, including medical, nursing and pharmacy schools and continuing education programmes. He called for a plan to be implemented by the end of 2017.

Finding the right solution

With more than 165,000 health-related smartphone apps, few of which have been evaluated rigorously, the NHS knows it must give patients more guidance. For example, Cochrane reviews of apps for diabetes and asthma management revealed only modest and patchy benefits.

NHS Digital is committed to publicising effective apps, after an earlier attempt was abandoned because some products it endorsed had privacy weaknesses.

Among the people who have found their own solutions is accessibility consultant and inclusive technology evangelist Molly Watt. She has Usher Syndrome, a rare genetic disorder that causes hearing loss and blindness. The story she told the summit about the lack of support for technology reflected the experience of many patients.

“When the blindness came on the audiologist knew nothing about the blind side and the visually impaired people didn’t know about the deaf side, and I was caught in the middle. When it came to the right technology the guidance just wasn’t there. There were a lot of misconceptions.”

Watt exploits the impressive accessibility features of Apple products: “My hearing aids Bluetooth-connect to my Apple watch as well as my iPhone, so I can direct stream from my watch phone calls, music, navigation straight to my hearing aids. In terms of safety and independence as a deaf blind person that is lifechanging.

“So it is through my journey of discovery that I found how mainstream tools can make my daily life easier. It wasn’t through the clinics. There should be more awareness of what can be done.”

The challenge ahead

Just as there is a national drive to make the NHS paperless, there needs to be a concerted effort to exploit the potential of patient apps. The benefits for individual patients are impressive, but the big opportunity for the NHS is to manage demand for services.

Achieving this will require end to end reform. Clinical training needs to provide the confidence to work with digital technology and the coaching skills to help patients manage their conditions.

Patient need to learn how to identify and use the right technology, while the NHS needs to move much faster in identifying the best.

Hospitals, surgeries and care homes need to provide the infrastructure to make it all work.

Technology companies need to meet patients’ needs comprehensively, which means involving them in every stage of design and development.

Most of all, people need to accept responsibility for self-management of  their  health, and understand the potential to technology to help them do it.