The Government’s plans for digital transformation of the NHS are highly ambitious – especially for patients.
It insists that the adoption of these technologies will radically change the way we think about our health and care, empower us to make the best health choices for ourselves and ultimately reduce demand on statutory services.
Is this realistic or just pie in the sky?
As we await the publication of the latest review of health care IT – led by US academic Bob Wachter – it is worth pondering on what it takes to galvanise people to take more control of their health and care.
The true test of these technologies will be the extent to which they provide effective support for the 15 million people with long-term conditions – the ‘high need, high cost’ patients.
As part of a series of discussion papers commissioned by the Commonwealth Fund and published by the Nuffield Trust, Ben Mearns and I examined the extent to which the needs of these people had been considered in recent initiatives.
We outlined three ways in which digital technology might be useful to them:
Finding health advice and services – such as health information, online booking and other transactions, accessing electronic health records and giving feedback
Support for self-management – for example: co-creating, recording, implementing and monitoring personalised care plans, decision aids, health coaching and predicting risks
Professional care at home – including telehealth and telemonitoring to avoid hospital/care home admissions.
At the heart of the NHS's IT strategy is a revamped NHS Choices portal.
This is to become a one-stop shop where patients can register with a GP, make appointments, order and pay for prescriptions, access personal health records, communicate with clinicians via email or video, download data from personal apps and wearable devices, manage integrated health and social care budgets and access a wide range of information and support services.
Planned future developments include full interactive access to personal health records (which allows patients to read and contribute to their own records), a digital version of the 111 helpline, a directory of reliable health apps, electronic support for self-care, and practical support for those who are digitally excluded.
So, how far have they got?
Development of the nhs.uk portal is proceeding apace, with some new services already added.
There has been a remarkable increase in the number of GP surgeries offering online appointment booking services, repeat prescriptions and access to summary records, from only 32 per cent in 2014 to 97 per cent one year later. More and more commissioning groups are introducing remote monitoring and telehealth, and data-driven predictive algorithms are enabling more precise targeting of those at risk.
Health information and interactive feedback, coupled with online professional and peer support, is bringing benefits to increasing numbers of patients and their families.
Nonetheless, many challenges remain.
What are the challenges?
Growth in internet use among over-65 year olds has been striking, but they are much less likely than those in younger groups to go online to access health services. Large numbers of people still lack basic computing skills and the digital inclusion programme is only scratching the surface.
Use of online primary care services remains low, with many patients unaware of their existence. By the end of 2015, only 11 per cent had ordered prescriptions online, seven per cent had booked appointments, and hardly anyone (0.6 per cent) had accessed their medical record. Many GPs have done little or nothing to promote the use of these facilities.
Electronic support for self-management continues to be underused. Only three per cent of patients have a written care plan. Record systems are often insufficiently flexible to allow recording of personal goals or to integrate decision aids and health apps.
Telehealth systems are sometimes clunky, and fit poorly with how individuals want to live and manage their health. Remote monitoring that requires only passive involvement can be disempowering, encouraging dependence on machines instead of boosting people’s confidence in their own self-care efforts.
So what can be done?
It is of some concern that Wachter’s team includes only one patient representative, albeit a formidable one. Dave deBronkart, or e-Patient Dave, is one of the leading US advocates for patient empowerment and co-founder of the Journal of Participatory Medicine. He is well-placed to give valuable advice on how patients can benefit from digital transformation.
My hope is that the review team’s recommendations will echo ours, which call for patients and front-line clinicians to always be involved in the development of new systems or technologies. We recommend the following:
Always involve patients and front-line clinicians in the development of new systems or technologies
Focus on those with the greatest support needs first, especially people with multiple long-term conditions
Spend time thinking about the problems you’re trying to solve, looking at these through patients’ and carers’ eyes
Specify realistic goals and allow sufficient time for testing and learning – don’t expect instant results
Actively promote digital services to patients and encourage clinical staff to do the same
Be prepared to go back to the drawing board if your innovation doesn’t achieve outcomes that matter to patients.
Ultimately, successful design and implementation starts and finishes with the patient, so their involvement in all stages of the process is imperative.
Coulter A (2016) ‘What can e-health do for patients?’. Nuffield Trust comment, 13 May 2016. https://www.nuffieldtrust.org.uk/news-item/what-can-e-health-do-for-patients