“I see trees of green…” Personal health records

Well, it only takes a sniff of spring to send us into a frenzy of buds and blooms; in short I’ve began to get carried away as you can see from the title!

Maybe it’s because I’m on leave this week and I’ve had more time than usual to reflect on the great potential of shared records as we begin to embrace aspects of connected health.  I’ve thought about this from a range of perspectives, healthcare professional, carer, Joe-Public and also through the lens of our local diabetes support group.

So, in no particular order, I’ll kick off  with my thoughts as a carer.  Last Saturday I brought our pet rabbit Mr Hoppy to the vets (can’t say why without breaking our relationship of confidentiality, suffice to say he’s on the mend :p).

And then this Tuesday I visited my father back in Wales, he’s been in hospital for close to 2 months now.  As it turns out,  Mr Hoppy appears to have a more comprehensive electronic health record than my Dad!

The fact that my father’s care is not connected has been the cause of many cancelled outpatient visits over the years, which led my father to create his own ‘personal health record’, a sheaf of loose papers, assembled from clinical letter copies. I remember him telling me with pride that on each occasion that he would ask his physician for a copy of the letter going to GP, this was stoutly challenged before they eventually acquiesced.  My father is not medical, but was quick to understood the enhanced safety and continuity of care that this gave to him.  Over the years, he’s even ‘curated’ a few outpatient appointments himself, actually providing the missing pieces of information that allowed the consultation to proceed, even though his doctor had first tried to cancel because of lack of notes.

Unfortunately, my Dad did not have this information trove to hand when seen on the ward by a surgeon for his peripheral vascular disease two weeks back… plainly that surgeon cannot have had access to the right components of my father’s records either.  This resulted in a chain of events that would have led to an inappropriate transfer to another hospital for tests plus an assessment that had already been done four months earlier.  Thankfully emails and phone calls headed that off.  Don’t get me wrong, the team looking after him has been wonderful, but they and my father deserve better if we are serious about wanting a safer healthcare system.

Where I work in the West Midlands, some help is at hand from an ambitious local project called the Central Care Record. This is an example of health information exchange, meaning it will allow patients to give permission for their record to be shared with health and social care professionals that they encounter. Work such as this will surely enhance patient safety and integration of care and is to be commended.  Importantly patients have control over who gets to see the record. Although, nothing is perfect and a vital component remains missing: valuable as CCR is, it still does not allow patients to see what is in their record.

Patient access seems to be a very sensitive area for GPs in particular and I have encountered a number of patients in my area who had been given a rather hostile response when they have raised questions about access to their own records.  Best evidence from around the world is that giving patients access to their record helps rectify any errors and omissions and has reduced litigation in the USA.  From next April GPs will be mandated to allow patients to make and change appointments online and be able to order repeat prescriptions, but patients will have to wait a further year to have a mandate to get electronic access their record. Until then it is possible to request a paper copy for a fee.  I feel sure that patient access will be the critical factor that increases data quality over time.

Learning from the USA, one excellent information sharing tool is project blue button.  Using this patients can download their medical record from one provider (both in electronic and PDF formats) and share this with their new team.  If you like apps, take a look at iBlueButton from humetrix.com. NHS England has signed a memorandum of understanding with their US equivalent, the Department of Health and Human Services, and project blue button is a high priority.  If your local Health trust is buying a new electronic health record system soon, be sure to ask if it is blue button ready!

At the U.K.’s national health Informatics conference #HC2014 last week, I found it surprising that personal health records did not feature.  It made me reflect on whether there is much of a demand out there from patients.  My organisation is looking at two options- one called Health Fabric (HF) and another called Patients Know Best (PKB).  Looking at how HF and PKB have been used so far in the UK it seems telling to me that most often their use is by carers (especially useful in the context of dementia) and parents (most PKB use is in super specialist paediatric settings)… So much for the patient knowing best… !  PKB does appear to have some really useful core functions like secured email between patient and their medical team, plus integration of video teleconferencing such as Skype.  However, it doesn’t come cheap, and tracking down evidence that it gives a return on investment (a critical factor for securing tech funding support from NHS England) plus is useful in mainstream long-term conditions such as diabetes, has proved impossible so far.

Meanwhile other local organisations have created a web-based portals to allow records access and sharing.  Sadly I have yet to meet a patient who has actually used these, I’d love to know about their experiences with portals.  If you use portals, please contact me, I’d love to hear your views.

Why do patients appear lukewarm about records access?  Perhaps they believe it will not actually help much, firstly since it’s often regarded as view-only and secondly with the belief (correctly) that most of the content appears to be jargon hieroglyphics.  Without their own version of the Rosetta Stone the record will be of little value. Maybe we need Google translate for healthcare-professional-speak?  Others may feel ill-prepared and scared of Technology, so it was truly amazing to hear at #HC2014 that through NHS England’s ongoing #ActivateDigital project 50,000 people have been trained to use Digital Healthcare.  Now that is a project I want to support!

Attitudes are changing – Health Informatics professionals realise that marketing health records as a tool-set which allows transactions (send and receive messages, make and change appointments, give feedback and rate services etc.) is likely to make this much more appealing to the public and I believe it will be a Gamechanger.

Talking of connected health, joining in with the diabetes online community this week has given me some revealing insights into the thoughts, fears and experiences of the people that I serve in my professional life. People in fact, just like me.  This has felt like discovering rare and precious pearls, so thank you DTweeps!  I think I last felt like this when I first became a DAFNE doctor eight years ago and the realities of type 1 diabetes each day were revealed to me.

This Tuesday’s local diabetes support group meeting overlapped with the weekly #ourD twitter chat, so I took the opportunity to ask group members about their attitudes to Twitter use and whether they would be willing to give it a try?  Whilst usage seemed low, I was impressed that many were willing to have a go, surprisingly age did not seem to be a barrier to enthusiasm!  Thursday night we have a pump evening, another opportunity to crowd-source concerning social media.  I am so grateful to Kev @OceanTragic who has shares with me his wonderful information leaflet entitled How social media can help people with type 1 diabetes.

Best evidence tells us that connected health helps build closer patient-physician relationships. Both say that by using the tools of digital healthcare they come to know each other better.  Reflecting on this as I look out at the buds and blossom, I say to myself what a wonderful world.

Pete