The Importance Of Information To Empower Health-App Users
Liz Ashall-Payne, CEO, ORCHA

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8 Min Read

Shining a light between the rock & the hard place: The importance of information to empower health-app users

Apps, and their use for the promotion of health and wellbeing, are the subject of increasing interest and enquiry; particularly in light of the NHS’ Long Term Plan, and ever-increasing pressures on scarce NHS resources. But finding and downloading effective, engaging, and most importantly, safe health-apps, is a significant challenge. While many have suggested that health-apps could be a ‘silver-bullet’, aimed at quashing the woes that stem from decreasing funding and increasing demand for incumbent NHS services, it is important to tread with caution.

Unlike pharmaceuticals, over the counter remedies, talking therapies, physiotherapy or surgery, health-apps can not only be sought, but readily obtained in absence of gatekeeping and safeguarding. The result is that you or I can download upwards of 200,000 health-apps today, with as little as a click of a button on the app-store. While this can be argued as the unique value-proposition of app-based health technologies, a lack of guarantees regarding the quality and content of such apps, means that this open-access feature of apps also represents the chief concern; and is likely limiting the enthusiasm with which healthcare professionals engage and promote their use.

The number of apps labelled as ‘pranks’ or for ‘illustration purposes only’ has been subject to year-on-year growth. But for those looking for convenient, easily accessible, and often cost-free support; or for those who are either vulnerable or impressionable; such technologies can pose significant health risks, beyond those that are apparent and conveyed (if at all) in the short description within the app store. An app that misleadingly claims to monitor blood pressure or blood sugar for example, may result in either (1) misleading information, (2) modifications to disease management not representative of true disease status (including the use of insulin or warfarin), or (3) serious adverse events including hypoglycaemia or stroke. One such app for monitoring blood pressure has been downloaded upwards of 1,000,000 times on the Android Google Play app store, while boasting a review rating of 4.3/5.

This raises questions regarding the utility of both the subjective user review score (which is inherently limited in only capturing both very positive or very negative views) and the number of prior downloads of an app, as potential surrogates for app quality. Recent research into apps targeted at chronic insomnia disorder conducted by the Organisation for the Review of Care and Health Applications (ORCHA) confirmed this. In this analysis, which is now available in the journal BMJ: Evidence-Based Mental Health, it was demonstrated that both user review scores, and the number of prior downloads of a health-app, were not only unreliable as proxies for quality, but in fact were inversely related; and as these metrics increased, the objectively measured quality of apps decreased (as assessed by presence of clinical evidence, data privacy policies etc.) This has left a considerable void regarding where reliable indicators of the safety and quality of app-based health technologies can be found, something which at least in part, has been tackled by the National Health Service (NHS).

Courtesy of the NHS’s digital assessment questionnaire (DAQ), and the NHS apps library (beta version), the number of ‘accredited’ and NHS-approved health-apps is increasing, albeit at a leisurely pace, with approximately 50 apps accredited so far. While a step in the right direction, the rigour with which such reviews are conducted comes at the expense of speed, and an estimated review time of 6-8 weeks, limits the possibility of such initiatives being conducted at scale. As such, the difference between the total number of health-apps available (~300,000), and those which have been quality-tested and approved by regulators or accreditation bodies (~50); is if anything, increasing; leaving little or no information regarding the validity, efficacy, and most importantly the safety, of 99.99% of health-apps available today; which to date have been downloaded by potential users upwards of 50million times.

This is where the Organisation for the Review of Care and Health Applications (ORCHA) aim to transform the process of health-app research and information provision. Positioned as an open-access, free of charge and publicly facing repository regarding the user experience, clinical efficacy, and data privacy of thousands of health-apps, ORCHA’s aim is simple; to empower and inform potential users of health-apps regarding potential risks and benefits, prior to committing to use. Through a structured, objective and peer-reviewed assessment, consisting of 160 question areas, answered on a ‘yes’ or ‘no’ basis, ORCHA provides information to the 99% of users of health-apps, which are yet to be formally assessed by health technology assessment bodies, and in doing so, ORCHA removes the information asymmetry that is currently clouding the health-app market in, distrust, disbelief, and uncertainty. Publishing a new review of a health-app every 30minutes on average, ORCHA pull in information for all 300,000+ apps available on both iOS and Android Google Play, organise these into medically approved sub-categories (including diabetes, mental health and diet and exercise), and then order these apps from the most to the least downloaded.

In doing so, ORCHA believe that focusing attention on providing information about the risks and benefits of apps currently used the most, and those which others are most likely to download, is likely to have the largest overall impact on the safety and effectiveness with which such apps are used. By providing a short, sharp summary of each app, prior to download, highlighting concerns including the lack of a data privacy policy, a lack of evidence to support claims of effectiveness, or a lack of accessibility options for those who are hard of sight or hearing for example; ORCHA is providing information regarding the ‘many’ health apps currently in use, and eliminating the information uncertainty that not only limits the allure of health-apps, but also puts users at risk when unknowingly using health-apps which do not look after your data, and may cause physical harm if used in the belief that they are approved medical technologies.

Liz Ashall-Payne, CEO, ORCHA

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