Who does, and who should, access Your Electronic Health Record
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Access, Purpose, Content — which is the driver?
These three drivers are inextricably linked, and each has a bearing on the others. The question is, how do we decide just who should have access to all, or some, of your medical record, what should be included, and at the end of the day, just what is the purpose of sharing this information between disparate interested parties?
Different attempted implementations of a centralised shared record around the world have met with mixed success. Detractors have been quick to point out shortcomings, particularly around content and access, and decrying the actual purpose.
It might just be that you are unable to resolve each of these individually, however let’s use access as the starting point and see how that drives the others. In other words, who should have access to your medical records other than your immediate clinical care giver, or doctor, also what type of access? As we explore the answer to this we can derive the content required in each instance, and finally we can land on the purpose(s)
I won’t claim to having all the answers, but hopefully I can air a few questions for consideration as we approach this important change to one of the core pillars of the medical eco-system. This is a big topic and I am unable to cover it totally in this post. This time I will be exploring personal access to your own, or family members’ records.
So, ignoring the criminal and underworld element for now, let’s go with legitimate access, and start close to home. You, and then what about immediate family.
It is well understood that the model of care has to change. Part of this is evidenced by the trend for people to become active participants in their health care, and, if they don’t arrive at their consult with an opinion from the internet, they will certainly research it straight afterwards. The word of the clinician is no longer absolute. There are many resources the layman can access to get very good, and questionable, diagnosis search engines.
Disruptive technology has also contributed to this with health apps on your mobile phone that can collate and store data from multiple sources so you can automatically track fitness, general health, sleeping patterns, even sexual activity. This is proving invaluable for diabetics, for example, to track their care plans.
In fact, you can probably collect more health related information about yourself than your practitioner has about you anyway. Does this mean that you should be making this available as part of your shared electronic health record for your practitioner to access and review with you on your next consultation with them? Yes, the sharing goes both ways.
Getting back to the point though. You can now be very informed about your own health, and the final piece is access to the clinical records held by your GP. Historically these have been the exclusive domain of the practitioner. We have all heard of the uncomplimentary acronyms in other people’s records, which occasionally surface, that are less then complementary. FLK — Funny Looking Kid, GOK — God Only Knows, UDI — Unexplained drinking injury, and so the list goes on. These do reside in doctors notes and, if shared, will appear in your record. Is there a place here for an amnesty period for all doctors to “cleanse” their consult notes before sharing kicks in.
Again, getting back to the serious aspect of having access to your own record. What access should you have and what do you do with it?
Let’s start with “read only”. In other words, you can see the record in human readable form. Do you really want to see your entire record from start to finish, and if you did, what would you do with it? An intensive series of Google searches and go back and challenge the clinician for questionable consults that happened years ago. Maybe some policies or constraints should be in place before this is allowed to happen.
Possibly you should only get to see your most recent encounter. This tells you what the condition was, the diagnosis, any prescriptions and so on — pretty benign really, but probably the most helpful, and even reassuring. Particularly if there are associated links to informative material to help you understand just what the condition means, or what the medications are that have been prescribed.
The question has to be now, what can you, or should you, be able to update in your own record? It is, after all, yours…
Many would say this is an easy question to answer. You, as a layperson, are not qualified to update your record with invalidated clinical information, and yes, to date that has been pretty easily argued, unless you happened to be a practitioner yourself. With the advent of advanced personal monitoring devices, should these update your records directly, or do they need to be substantiated by your GP before inclusion in your longitudinal record as true and valid readings. Eg. Blood Pressure, Blood Sugar, heart rate, and so on. Also, even if these records are invalidated, should they still make it into your record under a “Patient Observed” category. I don’t believe this exists as yet, but I also think it is an important component on one’s own medical record.
I could go on, but I would rather close with one last question. What about access to your immediate family and loved one’s records? Children? At what age is there a cut-off between automatic right to access and the child’s privacy, what about broken and mixed families, which parents should be allowed access to which children?
A lot of questions yet to be addressed. Equally importantly, are you ready to see your spouse’s long term medical history? Is this really a sanctuary you want to disrupt?
