After Simon Stevens big statement on smartphones at the #NHSWDP event, I’d asked what sort of assessment had the NHS done on how wearables’ data would affect research.
#digitalinclusion is clearly less about a narrow focus on apps than applied skills and online access.
But I came away wondering how apps will work in practice, affect research and our care in the NHS in the UK, and much more.
What about their practical applications and management?
The question needs an answer before many more are launched: how will these be catalogued, indexed and stored ? Will it be just a simple webpage? I’m sure we can do better to make this page user friendly and intuitive.
This British NHS military mental health app is on iTunes. Will iTunes carry a complete NHS approved library and if so, where are the others?
We don’t have a robust regulation model for digital technology, it was said at a recent WHF event, and while medical apps are sold as wellness or fitness or just for fun, patients could be at risk.
In fact, I’m convinced that while medical apps are being used by consumers as medical devices, for example as tests, or tools which make recommendations, and they are not thoroughly regulated, we *are* at risk.
If Simon Stevens sees smartphones as: “going to be the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond,” then we’d best demand the tools that work on them, work safely. [speech in full]
And if his statement on their importance is true, then when will our care providers be geared up to accepting extracts of data held on a personal device into the local health record at a provider – how will interoperability, testing and security work?
And who’s paying for them? those on the library right now, have price tags. The public should be getting lots of answers to lots of questions.
“Over the coming decade” has already started.
What about Research?: I know the Apple ResearchKit had a big reaction, and I’m sure there’s plenty of work already done on expectations of how data sharing in wearables affect research participation. (I just haven’t read it yet, but am interested to do so, feel free to point any my way).
I was interested in the last line in this article: “ResearchKit is a valiant effort by Apple, and if its a hit with scientists, it could make mass medical research easier than ever.”
How do we define ‘easier’? Has Apple hit on a mainstream research app? How is ‘mass medical research’ in public health for example, done today and how may it change?
Will more people be able to participate in remote trials?
Will more people choose to share their well-being data and share ‘control’ phenotype data more in depth than in the past?
Are some groups under- or not-at-all represented?
How will we separate control of datasharing for direct care and for other secondary uses like research?
Quality: Will all data be good data or do we risk research projects drowning in a data tsunami of quantity not quality? Or will apps be able to target very specific trial data better than before?
How: One size will not fit all. How will data stored in wearables affect research in the UK? Will those effects differ between the UK and the US, and will app designs need different approaches due to the NHS long history and take into account single standards and be open? How will research take historical data into account if apps are all ‘now’? How will research based on that data be peer reviewed?
Where: And as we seek to close the digital divide here at home, what gulf may be opening up in the research done in public health, the hard to reach, and even between ‘the west’ and ‘developing’ countries?
In the UK will the digital postcode lottery affect care? Even with a wish for wifi in every part of the NHS estate, the digital differences are vast. Take a look at Salford – whose digital plans are worlds apart from my own Trust which has barely got rid of Lloyd George folders on trolleys.
Who: Or will in fact the divide not be by geography, but by accessibility based on wealth? While NHS England talks about digital exclusion, you would hope they would be doing all they can to reduce it. However, the mental health apps announced just this week each have a price tag if ‘not available’ to you on the NHS.
Why: on what basis will decisions be made on who gets them prescribed and who pays for the, where apps are to be made available for which area of diagnosis or treatment, or at all if the instructions are “to find out if it’s available in your area email xxx or call 020 xxx. Or you could ask your GP or healthcare professional.”
The highest intensity users of the NHS provision, are unlikely to be the greatest users of growing digital trends.
Rather the “worried well” would seem the ideal group who will be encouraged to stay away from professionals, self-care with self-paid support from high street pharmacies. How much could or will this measurably benefit the NHS, the individual and make lives better? As increasingly the population is risk stratified and grouped into manageable portions, will some be denied care based on data?
Or will the app providers be encouraged to promote their own products, make profits, benefit the UK plc regardless of actual cost and measurable benefits to patients?
In 2013, IMS Health reported that more than 43,000 health-related apps were available for download from the Apple iTunes app store. Of those, the IMS Institute found that only 16,275 apps are directly related to patient health and treatment, and there was much to be done to move health apps from novelty to mainstream.
Reactionary or Realistic – and where’s the Risks Assessment before NHS England launches even more approved apps?
At the same time as being exciting, with this tempting smörgåsbord of shiny new apps comes a set of new risks which cannot responsibly be ignored. In patient safety, cyber security, and on what and who will be left out.
Given that basic data cannot in some places be shared between GP and hospital due for direct care to local lack of tech and the goal is another five years away, how real is the hype of the enormous impact of wearables going to be for the majority or at scale?
On digital participation projects: “Some of the work that has already been done by the Tinder Foundation, you take some of the examples here, with the Sikh community in Leicester around diabetes, and parenting in other parts of the country, you can see that this is an agenda which can potentially get real quite quickly and can have quite a big impact.”
These statements, while each on different aspects of digital inclusion, by Simon Stevens on smartphones, and scale, and on consent by Tim Kelsey, are fundamentally bound together.
What will wearables mean for diagnostics, treatment and research in the NHS? For those who have and those who have not?
How will sharing data be managed for direct care and for other purposes?
What control will the patriarchy of the NHS reasonably expect to have over patients choice of app by any provider? Do most patients know at all, what effect their choice may have for their NHS care?
How will funding be divided into digital and non-digital, and be fair?
How will we maintain the principles and practice of a ‘free at the point of access’ digital service available to all in the NHS?
Will there really be a wearables revolution? Or has the NHS leadership just jumped on a bandwagon as yet without any direction?
[Next: part three – on consent – #NHSWDP 3: Wearables: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care?]
[Previous: part one – #NHSWDP 1: Thoughts on Digital Participation and Health Literacy: Opportunities for engaging citizens in the NHS – including Simon Stevens full keynote speech]