Your Electronic Health Record
Sharing, Access, Ownership, Custodianship
In New Zealand, virtually everyone has an Electronic Health Record, EHR for short. Some people might have a few as a result of visiting a few doctors over time, although they are probably the exception. Currently this record probably resides with your primary clinical care giver, your GP (Doctor), where it has developed over the years to become a history of your interaction with the health service in New Zealand. This is also true for Australia and numerous other countries around the world.
In recent years there has been a drive to share this EHR between health providers with whom you might come into contact. This is the holy grail of healthcare, sharing patient records between providers, providing the right information to the right person at the right time. (As the saying goes) This has potential for improved health care as well as cost and time savings that are significant. For all the privacy concerns, many people are still surprised that this does not happen already.
Different countries government agencies have tried to implement this vision with mixed success. Anecdotally, there doesn’t appear to be a model that is working effectively. Australia has run into significant challenges, Singapore has had difficulty, I believe the UK is yet to get any traction and it is now one of Health Minister Colemans focus for the coming term.
The implications of this happening are far reaching. And once this step has been taken, there is no turning back. But for Shared Electronic Health records to be effective the service needs to be established on very sound principles, with strong governance and be fit for purpose.
To date, each instance of a National service being established for sharing records, it has been orchestrated by a government agency of one type or another. Not to say this is wrong, but I think this is an area worth exploring and we should dig deeper into this in the coming weeks.
Also, there is the delicate matter of “ownership”. Until now the doctor with whom you have most contact has held de-facto rights to the electronic record, and quite rightly so. What happens in the new world, where this record is opened up to sharing between parties, means the role of the doctor as the custodian of the record starts coming under threat.
If this is the case, who should own the record. By rights, as a patient, the record is yours. However, with ownership of this record comes responsibility. As a patient it would be irresponsible to allow you to make changes at will and potentially compromise future healthcare. So although, for all that you own your record, you should not be allowed to tamper with it. The reality is that as a patient you are not actually qualified to make changes to this record.
That brings us to the right of “Access”. Inextricably coupled to access, is “Content” and then “Purpose”. Before you can even start to define who, as in type of medical practitioner, has what rights of access, as in read/write/edit, to your electronic health records, the purpose of sharing this record needs to be established. Based on the purpose the content should be agreed and defined. Should it be the entire record and all the history? Should it be selective pieces, or possibly even just a snapshot in time based on the most recent interaction with any health service? Should it be distributed, and subject to access rights, the record is assembled accordingly?
And then to the elephant in the room. Where should this shared record reside? As a National Service, should this be operated and governed by a Government agency? Would it be better served operated by a collective of stakeholders: Clinical Software Vendors and Service Providers; Consumer Representatives; Health Practitioners; Hospital; Labs; and so the list goes on.
Of course, the next very real debate to be tabled needs to be the matter of hosting the service. Cloud is definitely the in-thing, then we need to address data sovereignty and recovery.
In reality this could take us full circle to the point where your clinical record is no longer stored and maintained by any one GP or Health service. The record could reside in the ether and when you next visit your health professional they could just access the record from wherever it resides and know they have the latest, and complete record, pertaining to your care. Wishful thinking maybe, but with increased aged population and limited funding available, new models of care need to come to the fore, and this might be one of the drivers to facilitate just that.
