This article first appeared on 14.5.13 on digitalhealth.net.
I recently listened to a documentary on smoking on Radio 4. As part of the programme, the researcher had interviewed people standing outside a hospital, in a shelter, smoking.
Most of these people were patients, some of whom had been wheeled out, but some of them were staff.
One member of staff – not a clinician – was asked: “Why are you here – don’t you know smoking is bad for you?” In response, she said something like: “If someone told me smoking was doing me harm I’d give up.”
I was amazed she clearly knew the hospital was full of smoking-related illness, yet couldn’t see that it applied to her.
Then, I remembered a case I read in a defence society journal. This involved a woman who successfully sued her GP practice after she developed cervical cancer for not trying hard enough to get her to have a smear.
The GP practice said it had invited her for a smear, but she hadn’t attended. She claimed she had been in for lots of other things over the years and the GPs had never, on these occasions, reminded her or explained the risks of not attending for a smear. She had assumed this meant it wasn’t important.
Access isn’t the issue
Without getting into that case too deeply, it made me think that having a personal health record – that was individualised and didn’t forget to tell people things – might be massively useful.
As people are using online access to make appointments and order medication, we might as well use that portal for this service.
So, yes, let patients see their records; but let’s not just give them the coded, unintelligible version that I as a healthcare professional use. Let’s interpret it for them and present it to them with information on their personal risks, problems, goals, and access to self help resources.
For example, when someone logs on, the system needs to let them know they are overdue a smear and push out links to sources of information about the consequences of not making an appointment.
The system needs to make it easy for them to book a test; but also, perhaps, to not let them book an appointment for something else without ticking a box saying they ‘understand the risks of not booking a smear at this time’.
Similarly, perhaps, the system should tell people what disease registers they are on. What are their individualised targets for things like blood pressure and cholesterol? What were their last readings?
One option to personalise the information is to show people where they are in their peer group. I sometimes use a trick I stole from Dr Dai Evans of PRIMIS fame on recalcitrant patients.
I show them a graph of all the systolic blood pressures of the 22,000 patients in my surgery for whom we have blood pressure recorded.
Having it pointed out to them that they have the third highest blood pressure in the practice sometimes makes them more compliant – at the very least it gives them an understanding of the risks they are taking. It also works for HBA1C.
Don’t tell me, tell them
I’m constantly driven mad by pop up boxes telling me “smoking status required”, “offer smoking cessation advice”, “needs a cholesterol”, “needs a blood pressure” and so on, and so forth.
Why are all these messages aimed at me? Why aren’t they aimed at the patient? When the patient logs-on, why don’t they get told “your last cholesterol was in July 2012 would you like me to book you an appointment for this July?”
That would also stop conscientious patients from booking in early and wasting appointments. Similarly, there are things like yearly PSAs that we, as GPs, are being asked to track for hospitals. Why not make the patient responsible, but with nice, friendly tech to help?
And on that subject, while the system would generally need to do all these things in a nice, friendly way, with links to information and support, perhaps there is room for a little tough-love as well?
How about links to a record of how often the patient hasn’t ordered their medication, or the clinics they DNAd? How about not being able to order medications online without being shown the cost and having to tick a box agreeing to take them properly and conscientiously?
Works both ways
At this point, you probably think I’m a crazy GP trying to dump his work back on his patients. Well, the second reason for having such a portal is for patients to check up on me.
What if I forget to ask my patients to come in for their annual PSA? What if I don’t bother getting their cholesterol to target? Does the person in front of me now know that they are part of the 10% of patients for whom we haven’t achieved BP and cholesterol goals?
Again, the pop up boxes might be a useful analogy here. If you were to log-on and were to see a message saying “your last glucose was above the threshold for diabetes – have you discussed this with your doctor? you might, quite rightly, make an appointment to ask me why I missed it.
Of course, I might not have missed it. I might just have thought the result was wrong. To stop these messages going out and worrying people, I’d need a way of clearing them.
Luckily, a way of doing this already exists, through exception coding. So if I got a message that might go out to a patient saying “why not on a beta blocker” I might code as “intolerant” or “had a reaction” or “known asthmatic”.
Going a step further, the exception coding might also be shown to the patient: “You aren’t on a beta blocker because you reacted to one in 1997.” Might lead to “ok’’ or “oh no I didn’t.”
Locally, we are looking at a system called Eclipse Live, which appears to have a list of 200+ patient safety items that it checks for.
There is no reason why these couldn’t be shown to patients. Things like “last potassium was high and on certain drugs”. This might empower patients to look after their health and push their doctors to give them better care.
A good idea that needs to go further
In my last column, I set out some reasons why GPs are sceptical about giving patients online access to records, and about the reason that patients may not be all that interested in the moment.
This lead some people to conclude that I’m against the whole idea. In fact, I can see real benefits in online records to both parties – but not if they are just put online in their current form.
What is needed is a real redesign of what a patient sees, how the data is presented to them, and what actions they are prompted to take as a result.
We probably need to get there incrementally to avoid overloading the system, and we need to balance putting responsibility back onto patients with informing them when their care is not up to standard.
There may be good reasons why a particular patient is on an odd regime; what we need to do is to make sure that both sides know that they are on that regime, and why. Linking online access to some of the current audit/quality tools may be a start.