I have had two curious experiences as a digital citizen this week. It all started with a rather depressing article I read in BMJ last weekend. It was a ‘yes/no’ debate (a common format in the magazine) on the question of whether GPs should allow patients to email them. I found it depressing for two reasons 1) I found it astounding that we should be debating the ‘question’ at all 2) The implication that e-mail might be even a remotely sensible tool for digital access to health care.

Even Digital Doctors Don’t Change

The debate continued on twitter – it appeared to me as a casual observer – that the argument against (apparently the overwhelmingly held view – even of GP twitterers) distilled down to the following:
– GPs are inundated with patients in their surgeries so how could they possibly have time to answer e-mails from them. (The doctor as victim argument)
– Face to Face consultation is a sacred rite of healthcare delivery – any qualitative diminishment of this is a disservice to patients. (The ‘I’ve been trained to do it this way I can’t believe it could possibly be done by a machine’ argument)
– Patients will ask silly or trivial questions and we would be swamped by the worried well. (The ‘We know whats best for patients’ argument) .
– What evidence is there that on-line access reduces demand any way? (The ‘If there isn’t a randomised controlled trial I’m not going to change’ argument)
I was appalled by the narrow perspective, lack of self awareness and how patronising and patriarchal the medical profession still is in 2014. I, rather inadvisably, said so on twitter – and was hit by a ‘twitter storm’ (more of an angry gust if I’m honest) of protest from doctors – what would I know, I’m just an anaesthetist!

Patients Doing it for Themselves

So that was my first experience of an online ‘trolling’ – an important rite of passage as a digital citizen. My second curious experience I’m glad to say was more uplifting. I received an unsolicited invitation from the King’s Fund to take part in a round table discussion about ‘The Art of the Possible’ in a digital future for healthcare. This took place on tuesday night – there were a variety of people – CEOs, MDs, Academics, Community, Mental Health, Industry, DoH (HSCIC) and Patient representatives.

The session started with the absolutley captivating story from Katherine Cormack. She spoke unwaveringly of her experiences of childhood and adolescent mental health problems, the inadequacy of the services provided to treat them and of her attempts to create a solution from the inside (she worked for the NHS for a while trying to set up online help forums for teenagers with mental health issues – but had to give up because of the barriers to change) and eventually joined a social enterprise which has developed an online tool called BuddyApp which creates an online regulated self-help community for patients and therapists.

A long and fascinating conversation ensued – which I can’t divulge because we were operating under ‘Chatham House Rules’. However the messages I took away were the following:

1) There is a desperate desire from users of the health service for it to enter the digital age – they feel ‘locked out’ and rebuffed by an un-listening and un-reformable system.
2) The world is innovating around us – the NHS is being left behind
3) The NHS is a jealous guardian of patients health information and cannot see a way through the mire of data protection, confidentiality and competition law to release it back to them – although in fact there are no reasons why these should be barriers
4) The NHS is incapable of disrupting itself – it cannot release cash from things it is currently doing in order to invest in doing things differently – this was implacably conveyed by the man from HSCIC
5) Yet it is only technology enabled patient self care that has the potential to relive the inexorable rise in demand for NHS services
6) There is a stark asymmetry between the value we (the health service) think we add compared to what patients think we add
7) The NHS has the long history and deep seated culture of a public service organisation that thinks it knows best – this patriarchal culture suffuses the organisation from its civil servants and managers to its frontline clinicians.
8) Those on the inside with insight and the desire to change it are a definite minority – but they are passionate and are seeing and implementing solutions, albeit in small pockets of the service.

Some Myths about Digital Patients

The other strong message that came through is that there are some strongly held beliefs of health professionals about digital healthcare that are simply not born out by the evidence.

Myth 1 – ‘Technology is the preserve of the young and the elderly would be excluded’ – Smartphone market penetration has exceeded 90% in the UK and the fasted growing sector is the over 65s
Myth 2 – ‘The elderly struggle to use or understand modern information technology’ – It is not uncommon now on our wards to see patients young and old using this technology intuitively and effectively. I have seen patients on our elderly care wards ordering their supermarket shopping in preparation for their own discharge.
Myth 3 – ‘Handing out devices to patients will result in them being stolen’ – this is simply untrue – devices have been used in solutions for the homeless and drug addicted with no or minimal loss
Myth 4 – ‘Digital healthcare is a poor substitute for face to face and hands on consultation’ – There is a very large element of health seeking behaviour which is simply looking for trusted advice and reassurance, patients value the continuous access that digital health affords compared to the limited hours and inconvenience of primary care or the appalling experience of A&E.

A Coalition of Radicals

The most uplifting part of the evening was being able to meet and network with developers of solutions for digital healthcare (like BuddyApp), professionals from the health service that have put them to use and representatives from patient groups that have been campaigning for greater patient autonomy and self care through access to their own health record. They are a weary tribe of campaigners because they get little audience from the service they are trying to improve. However there was a clear shared vision and enthusiasm for digital access to healthcare and evidence of real progress from some innovative developers.

It is clear to me that it is this tripartite coalition – patients, third party developers and willing clinicians that will deliver the digital future of health. The only change from inside the health system that is needed is the release of patients own information back to them – and that should cost nothing. Its time to campaign for your right to access your own health information. This innovative disruption will change the NHS from the outside for ever.

1 Comment

  1. “To the barricades!”, well said Roger 😉

    Many of your digital citizens in the ‘tripartite coalition’ will be in Leeds next weekend for http://nhshackday.com

    Pete

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