The rise of the digital patient

Sophie Castle-Clarke, fellow in Health Policy at the Nuffield Trust, focuses on the digital tools that are starting to have an impact on patients looking after themselves.

Many have criticised the sluggishness of the NHS in joining the digital revolution. While as consumers our lives have been transformed by a plethora of online services and information sources, the health service has been comparatively slow off the mark.

But while the NHS is struggling to keep up, patients are becoming increasingly interested in using their Smartphones to manage their health and care. And technology developers are eager to oblige; there are already over 165,000 health apps on the market.

Meanwhile, policy-makers have encouraged patients to go online to book appointments, order prescriptions and access their records. But while the health app and wearable market seems to be booming, uptake of official online channels remains low.

Our new research looked at the impact of patients engaging with digital tools such as apps and online services and how the NHS can harness the growing enthusiasm for healthcare technology. Here, we focus on the digital tools that are starting to have an impact on patients looking after themselves.

What works?
Equipping patients with the confidence to manage their health and care is one of the biggest benefits of patient technology. Although the majority of apps have not been evaluated, we are already seeing positive impacts on diet monitoring, physical activity and chronic condition management from ones that have.

Some of the reasons consumer technologies like apps work well are that they are personal, interactive, customisable and in the patient’s pocket all the time. This makes behaviour change supported by consumer technology much easier to scale than professional support alone.

Wearable technologies, like Fitbits, have also had some success in improving physical activity and weight loss, although a recent study showed wearable technology was less effective than a website for those looking to lose weight. Sustained engagement with wearable devices and weight regain present significant challenges.

Granting patients access to their medical records online has also had very positive impacts on supporting self-care. Patients often gain a better understanding of their health, which can lead to more productive conversations with their GP. Likewise, professionals have found their job is made easier by patients attending appointments with a prepared list of queries and concerns. Record access can also allow doctors and their patients to decide the best course of action together, incorporating patient preferences.

Finally, online patient networks that allow patients to connect with each other and share tips on how to manage their condition can result in improved behavioural and clinical outcomes and a greater sense of support for patients. One example is Patients Like Me which is open to patients with any condition. Patients complete profiles on the site, including their diagnoses, symptoms and treatments. They are also invited to complete treatment evaluations, noting any side effects, adverse reactions and positive benefits. This information is then aggregated and available to all members of the site so patients can learn about new or potential treatments.

So what’s the downside?
There’s some good work happening, but it is not all positive or straightforward. Although some apps are starting to return positive results most of them haven’t been evaluated, and of the ones that have been evaluated many are inaccurate, ineffective or do not protect patient data.

Maintaining long-term engagement with consumer devices is also a significant challenge; many people get bored after the initial novelty wears off. And almost all apps are developed with a single condition in mind. Many patients who would benefit significantly from support to better manage their health have multiple long-term conditions: at the moment this means they will need several apps (unless they’re using generic medication reminder apps for example), making it even less likely that they’re going to stick with them.

While online access to records can lead to positive results for patients, we do not properly understand how they impact on demand for services. Some have suggested they can release administrative efficiencies by removing the need for patients to call their practice for test results for example. But in one large study in the United States, online access to records and clinicians via email increased GP appointments, telephone consultations, A&E attendances and hospital admissions.

Patient access to records also raises a number of governance concerns. Some worry that vulnerable patients could be harmed by having access to their record or their data could be exploited. Where full record access is granted – with referral letters and free text entered by clinicians – professionals are also concerned about the extent to which third party data is shared.

Perhaps most importantly, many people struggle to understand health information. Recent work suggests 60 per cent of working age people in the UK find health information containing both words and numbers too complex. Some people also struggle to identify trusted sources of online information.

And millions of people in the UK are still offline or lack basic digital skills. Many of these are the people at most of risk social exclusion such as those 65 and over, the unemployed and people with disabilities.

How can the NHS harness the potential?
Despite the risks and concerns, the NHS can benefit greatly from engaging with patient technology. But to do this it needs a new approach to supporting patients to look after themselves, regulating new innovations and encouraging uptake.

Where apps have been prescribed, estimates suggest engagement is 10 per cent higher – and 30 per cent higher for fitness apps. Not only that, apps for behaviour change and monitoring are likely to have impact when professionals draw on the data and encourage on-going use.

This suggests professionals need to actively engage with consumer technology. But before they can do that they need appropriate support. Firstly, they need assurance it is accurate and effective. Plans to evaluate apps and wearables according to their function and risk level are welcome and will play an important role.

Secondly, they need robust guidance about how far they are expected to use patient-generated data and whether they will be held accountable if patterns in the data are missed or ignored. Data reports that are clear and easy to interpret may go some way towards addressing these concerns. Thirdly, they need support to identify and prescribe appropriate innovations – easy access to consumer technology that has been through any of the four stage evaluation process and a generic framework for prescribing apps may help. It may also be beneficial for policy-makers to consider incentives to encourage NHS staff to use patient data where appropriate, at least in the short term.

Patients too need to be on board with this new approach, and should be informed about the benefits of sharing their data alongside their right to opt out. Bespoke technology for patients with multiple conditions would make greater reliance on apps to support self-care more feasible. The innovation and technology tariff, that will reimburse technology suppliers whenever their app is used in the NHS, may incentivise innovators to focus on more complex patients, which they have historically shied away from.

Similarly, professionals need to take a different approach to medical record keeping. The record should be used to actively support patients to look after themselves, with signposting to appropriate resources and information. This is a significant shift from using the record for professional communication which has been its primary function to date. It will take time and may require additional training.

Most importantly the evidence suggests we need a workforce that can support sustained self-care, encourage digital uptake and improve health literacy – particularly for those at risk of exclusion. This could include greater use of health coaches, public health nurses and volunteers in the community and general practice. There are already a range of self-care initiatives throughout the country and there are good opportunities to build on existing efforts.

Of course digital services should only be offered alongside traditional channels to avoid disadvantaging those who are offline.

All of this suggests investment and concerted effort is needed to make this work successfully and at scale. It is a mistake to think that self-care through apps or other means will be a magic bullet for reducing deficits. But there is potential for significant improvements in patients’ quality of life, confidence and ability to manage on their own which may lead to savings in the longer term.

By creating an environment for self-care and innovation to flourish, the NHS might be able to finally join the digital revolution.

Sophie is a Fellow in Health Policy at the Nuffield Trust. Her current projects at the Trust include analysing the potential of technology to improve service provision and workforce productivity in the healthcare sector and mapping the various approaches to the delivery of acute care across the NHS.

Prior to joining the Trust, Sophie worked as an Analyst at RAND Europe. Her work there spanned a diverse range of research areas including health innovation and drug discovery, attitudes towards vaccines and strategic health policy. Her clients included the Department of Health, Public Health England, Vaccines Europe and the Structural Genomics Consortium.

Sophie gained her MPhil in 2011 from the University of Cambridge.

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