Roy Lilley nailed the problem in his usual way: I think it is only a matter of time before the public starts to say; ‘Why do I have to queue on the phone to get an appointment with my GP?’ ‘Tell me why I have to have a day off to speak to someone I can talk to on Skype from my desk?’ ‘Why can’t I use near-patient testing and the technologies I take for granted in the real world outside the NHS?’
93 year olds with IPads
My mother is 93 years old and has an iPad. She wants to know why she can’t FaceTime the practice nurse. So do I.
93 year olds with IPads like Roy’s Mum are not the distant future. Much of it is here already. British society – the patient population – is changing. UK domestic internet access will soon be near universal and this will empower patients and service users like nothing else before.
Transparency and access to data about providers is a keystone of the information revolution objective of NHS England’s Everyone counts: planning for patients 2013/14 Younger healthcare consumers will expect to access things on their tablets and smart phones like they do the rest of their lives. And many of them will want to do this – with consent – on behalf of their parents and older relatives to give them the benefit too even if they don’t have the technology themselves.
The NHS is not being responsive.
So, why can’t Roy’s Mum FaceTime the practice nurse at her surgery on her IPad and thereby make fewer demands on them by sorting out queries in a simple and convenient way? The answer is “it’s not allowed by the culture”. Underlying that is an exaggerated fear about “confidentiality of named patient data”.
But one has to shout loudly at this point: “Whose data is it anyway?” Information about me belongs to me. If I agree that I don’t mind sharing information about myself over social media with a healthcare provider I trust and who is keen to do it, then that should be my decision and their’s not someone else’s.
But the guardian of all things medical the General Medical Council does not agree. They contend:
“Social media sites cannot guarantee confidentiality whatever privacy settings are in place”. “[Doctors] must not use social media to discuss individual patients or their care with those patients or anyone else”. GMC, Doctors’ use of social media -March 2013
Question: what does “social media” mean in the GMC’s prohibition. Answer: the GMC doesn’t seem to know what is public accessible and what is not. What about Skype person to person audio and video links and direct messages sent via Skype? Or Direct Messages sent to a particular follower on Twitter? Face Time for an IPad user is also “1 to 1” with another IPad/smart phone user. None of these are “publicly accessible” as far as I know. Some surgeries have been using text messaging to remind patients about appointments, prescriptions, test results and other things. It seems to work well. Does the GMC not approve? Not if we take their words at face value.
Throw out the Fax machine now
It sounds like the GMC is simply trying for a blanket prohibition without understanding the differences in the technology and its applications. This really has to change. Some surgeries say they will communicate with patients via fax – FAX! Who has one any longer? Mine went to recycling years ago. Why not scan a query or report and send as an email attachment?
The Kings’s Fund says that 60% of GP practices already have the IT in place to allow online access to our records, but that only 1% of them currently do this. So “the culture” excludes the rest of the 99% of us – the customers and co-owners of the NHS. There is no rational justification for this and we must demand that it stops.
Hijacking my BP readings isn’t a concern
I have taken by blood pressure readings at home for years and sent the results more or less dutifully to the practice nurse at our surgery. We communicate normally by open email, which means that I don’t have to go see her and take up her time for routine advice that I know anyway. Do I worry about my personal data being hijacked? No. If someone wants my BP readings they are welcome to them.
It should be an individual decision depending on the kind of data. If I were a celebrity footballer being treated for some exotic condition it might be a different matter, but for routine lifestyle things and long term conditions management – which take up so much surgery and out patient clinic time – why not use the simple IT solutions with everyone’s consent? Sure, it could go wrong. But if we don’t trust the customers and the clinicians first to try to get it right then we will never get anywhere by strangling this at birth as the GMC seems to be trying to do.
Stop the gulf of expectations widening
Failure to maximise access through use of IT solutions just encourages the gulf to widen between our everyday experiences and expectations of how modern life works and the ability of the NHS to be responsive to us. We are in the 21st century and most of the NHS is stuck in the previous one. That undermines trust and confidence. It also increases risks about patient safety and quality outcomes, to say nothing about user satisfaction.
It’s time to change things, starting with the Luddite advice the GMC is giving doctors about social media.
The Millar Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. Feel free to contact us to discuss the opportunities. Follow MAC on Twitter @publicinvolve