Digital Health or Digital Hell?
By Carmen E Lefevre, on 10 January 2017
By Dr Julia Bailey
Background There has been an explosion of interest in digital health, with some grand claims about the potential to save lives and save money. Despite the high hopes, only a tiny minority of available health websites and apps have been rigorously evaluated for effectiveness and safety. Whilst digital interventions for health are very popular, we need to check that they do not inadvertently cause harm.
Do digital interventions work? Digital interventions are convenient, can be accessed in private, and can facilitate connection and emotional support. There is great potential for automated reminders and prompts, and low per-patient costs if interventions are rolled out at scale. Apps and websites can provide tailored content, and are very effective at conveying facts. Changing behaviour is more challenging, but interactive digital interventions can prompt smoking cessation, safer sex, and adherence to medication for example[i].
What’s happening in the UK? There are pockets of digital health innovation, and strong national policy support, but wider roll-out is hampered by localised health service budgets, and great inconsistency in the local implementation of national plans. There are very few evidence-based interventions which are ready for roll-out, poor provision of patient IT in NHS settings, and staff and patient reservations about digital interventions (e.g. lack of confidence with technology, and concerns about threats to face-to-face health services).
Can digital interventions cause harm? There is a growing body of evidence on digital interventions, for example user views on their acceptability and usefulness, and research trials. However, most commercially developed digital interventions are released with no assessment of safety, quality or effectiveness, and there are often inadequate procedures for data security or informed consent for data collection and use. Usually there are no mechanisms to collect information on potential harms, especially unanticipated harms. For example, interventions may be used in unexpected ways, such as the (mis)use of alcohol self-monitoring apps in drinking games. Interventions may not work as intended, for example, an intervention may be designed to mobilise social support, (e.g. encouraging users to share their achievements), but this could backfire and cause harm if someone does not receive anticipated support.
Who needs, and who accesses digital health interventions? Although download figures can be very impressive, it is not usually known whether online interventions are reaching those who actually need help. Some groups with the greatest health problems are less likely to be literate and to have access to the Internet, and this is likely to lead to greater health inequality.
Which health problems are app-able? Some health problems are much more amenable to quantitative self-monitoring than others – for example it is easy to count and set targets for number of steps taken, alcoholic drinks or cigarettes smoked. For many conditions, it is much more difficult to quantify ‘healthiness’, for example, the dimensions of a relationship such as respect and trust, or sexual satisfaction. Some health problems carry much more stigma than others – for example, people may share their exercise achievements online, but are unlikely to declare their plans for reducing illicit drug use, or using condoms. People are less likely to ‘like’ and share resources which relate to stigmatised topics such as HIV. Some health problems have therefore received far more attention than others, and it may not be commercially viable to offer an app for health problems which are rare or stigmatised.
Can monitoring be harmful? Self-monitoring can facilitate self-management, empower patients, save healthcare costs, and enhance health. However, monitoring can cause anxiety even if readings are normal: for example fluctuations in blood pressure or a baby’s heart rate are normal, but variations in readings could cause concern, and could lead to obsessive checking. Parents in particular may opt for ‘better safe than sorry’, which is likely to lead to greater use of health services. This may lead to earlier detection of illness, but is also likely to lead to the investigation, treatment and medicalisation of completely normal conditions. Digital data can be transmitted directly to health carers, but services are already overwhelmed, and who will take responsibility for acting on a vast volume of data?
So in summary, how can we make the most of innovation in the digital health field, whilst also making sure that interventions at the very least do no harm?
BIO: Julia Bailey is a clinical senior lecturer at the University College London eHealth Unit, and a speciality doctor in community sexual health. Her research focuses on sexual health promotion via digital media (Internet, mobile phone), using various different research methods (qualitative field work, online trials, discourse analysis).
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[i] ‘Digital intervention’ means programmes that provide information and decision support, behaviour-change support, or emotional support for health issues. They require contributions from users to produce personally relevant, tailored feedback.