Digital Health – Big data, big business…big problems?


technology futureOn 26th April I was invited to join the debate facilitated by mHabitat and Leeds Beckett University as part of the Leeds digital festival.  I accepted with some trepidation – I have never participated in this way in a debate before.  The motion was:

‘the house believes that digital innovation in health is benefitting big business over patients’

I was to speak against the motion and was a seconder.

I really enjoyed the experience.  I realise I can be quite competitive and that comes out, even when its merely an academic exercise.  We did manage to sway the audience with the end result being 15:18.  I may have cheated slightly at the end by whipping my insulin pump out of my bra and waving it around as an example of digital innovation 😉

The debate led me to think about the importance of ethics in business and in particular the health sector.  I do believe we need digital innovation but we need to be sure we act this out with a clear focus on an ethical approach to technology and the use of data.  I am not sure we yet have this sussed.

Here are my words:

‘To remind you the motion is that the house believes that digital innovation in health is benefitting big business over patients.  It’s my task to persuade you that this is not the case!

My proposition is that the relationship between big business and patients in relation to digital innovation is one of interdependency and not supremacy of business over patients, that is, that big business and patients have a mutual reliance in successful digital innovation.matching

I think most people would agree that innovation is only possible when innovators successfully fill a need or solve a problem.  I would suggest that those gaps and needs belong to patients and if big business fails to seek these out and productively meet these needs then their products will fail and join the lists of 1000s of unsuccessful apps piled on the mountain of useless apps.  We know that 90% of app install are generated by only 10% of apps – this means that understanding the needs of patients and meeting them is crucial to a successful business strategy; its a mutually dependent relationship.

In the past the biggest buyers of health technologies were health systems but today things have changed.  According to Ofcom (2015) 66% of adults carry a smart phone.  This shifts the technology infrastructure to the pockets of actual or potential patients – I have more computing power in my handbag than I would ever have dreamed possible in 1979, the year I was diagnosed as having T1 Diabetes.  But I also have buying power as the cost of technology has plummeted; the ability to chose and rate devices in increasingly transparent way is becoming the norm.  To imply people are not able to chose and can be hoodwinked by big business is paternalistic and wrong.  Meeting he needs of these increasingly tough customers is a priority for the technology providers. It’s tough out there with patients even going so far as to share recommendations!

The public need to work with technology companies.  We need them to be successful.  We need them to invest in creating successful innovative products that meet our needs.   High quality technology can take years of development and investment. If tech companies are to invest they need to invest in successful products – of course that’s those that meet the needs of patients (public and citizens).

But of course for those cynics out there you may think that it’s still just about the money….. well that maybe true but existing regulation and rigorous evaluation that needs to take place in health settings puts some brakes on industry – some might say it actually creates barriers to entry.  I might say that the rigor of assessment through mechanisms such as clinical trials means that big business has to care.

knowledgeSo my conclusion is that its a mutual relationship with power held in both camps, where the only way for big business to meet the needs of patients is to fill the gaps and this needs to be done in partnership with patients, or even by patients, who, god forbid, actually lead the technology innovation; innovation such as #nightscout and the #wearenotwaiting project.

Finally to quote Ghandi (because in a debate always end with a quote!!)

‘It is difficult, but not impossible to conduct strictly honest business’ (the emphasis is mine)

 

People Drive Digital Reflections


networkI have been to NHS EXPO today. As always it was great to meet lots of people I have met and worked with over a number of years; I love seeing them, giving them a hug and re-connecting with them (you all know who you are). It is one of the privileges of my working life that I have met so many fabulous people.

Today was interesting for me as I didn’t go to EXPO in my professional capacity but in a personal one, as someone who has an interest in digital innovation but from the perspective of a citizen and patient and today felt very different – but is it EXPO that has changed or me?

PDDigitalToday I briefly presented with Victoria Betton and Mark Brown the work we have done on People Driven Digital and the PDD Awards (HT to the others too Michael Seres, Kat McComack). I realised that I had changed from a year ago.

I spent many years as a nurse giving patients advice and information. We thought it was the right thing to do and of course it is but it’s also paternalistic, based on the assumption that ‘we’ know and ‘they’ don’t.

Over the last year my experiences of working in collaboration with other people like my fellow collaborators for #PDDigital, and many others in my social network with Diabetes, has made me realise that the system doesn’t know what problems people face as intimately as they do. We can make assumptions, we can guess and in doing so we may well get it wrong; we may hit the target and miss the point. Mark spoke eloquently today (you can read what he said here http://thenewmentalhealth.org/?p=182 and it’s well worth a read) about focussing on trying to find digital solutions to those issues that really matter to people, not necessarily the big things but those that in people’s lives make a real difference. You can see our presentation here

So today, whilst I wandered around EXPO, I reflected on what felt ‘real’ and what maybe mattered the most. There was little evidence of people driving solutions and creating ideas and I realised I had changed. I have come to realise that unless we engage at the start with the citizens, we are unlikely to make the differences we need to make. We might create elaborate solutions but may completely miss the point. We need People Driven Digital Innovation.

pump openerI have an example: I was a grateful receiver of a new insulin pump a few months ago. It has a snazzy screen and some new functionality that means if you are a user of a continuous glucose monitor (I am not funded to be one) then it will switch off the delivery of insulin if your blood glucose goes too low – very clever indeed. But what was it that delighted me when I collected my pump? On my old pump, in order to access the battery to replace it (yes insulin pump are powered by a traditional AA battery!!) I had to carry a 20p coin in my bag. It’s the only reliable way to be able to open the battery space – it’s tricky but fairly crucial to be able to get in! On my new pump there is a removable clip that had a snazzy little device on the end that enables you to open the battery space. A simple remoulding of the clip – inexpensive and functional – I know, I know, so simple – but it was the snazzy solution for the battery opener that delighted me. A small but delightful improvement and now I don’t worry about 20p pieces. Let’s try focussing on the small things that might matter to people.

How do you think we could develop the ideas from #PDDigital? Let us know.