My province, British Columbia, is one of many jurisdictions currently in the process of implementing eHealth, which is (in part) basically a large scale, provincially-coordinated implementation of the Electronic Medical Record (EMR).
And I’m gonna come out and say it: I’m a privacy advocate who is pretty much in favour of government-administrated EMRs.
(Of course, there is a catch…)
I work with health data. I mean, I don’t actually lay my own grubby librarian hands on most of it, but I work in a data-rich environment and with researchers who are analyzing lots of health system data. This stuff is highly privacy sensitive. There are parts of my office I’m not even allowed in without an escort, passing a security cam, and signing a log. And that is how it should be.
I sincerely appreciate the tension between
a) the researchers who want data access and linking in order to do good research and improve health and healthcare, and
b) data stewards and privacy officers who want to protect our privacy first and foremost.
Sometimes the privacy laws and regulations make it harder to do good research, but that’s part of the process.
For example: here, we’re not allowed to identify subpopulations with particularly diagnoses anymore, to survey them, because that’s considered invasive of their privacy. Fair enough – I wouldn’t necessarily want to be subject to lots of survey requests from people who somehow found out I had disease X. However, this also understandably makes it harder to research disease X, when we can’t just pull a representative sample (or all patients) to survey/study.
Both sides – the research/access and the privacy protection side – need good advocates in order to find the best (or at least an appropriate) balance. And I do believe in that balance.
It’s kind of like how in domestic violence shelters there’s often a staff member advocating for a mother who is in shelter, and another staff members advocating for the mother’s child. Usually what’s best for mum (the primary shelter client) is best for the whole family, and there’s no apparent need for the child’s advocate. But sometimes that’s not the case, and both mum and child deserve a strong advocate who is primarily concerned with their welfare, in order to strike a balance and find a solution that is in the best interest of most people.
I’m not a perfect privacy advocate. I do not believe the government having any information on me is necessarily a bad thing. Sure, there are days when I dream of living off the grid and having babies who never get social insurance/social security numbers. Mostly, though, I think of myself as a realist whose goal is to help the government find an appropriate balance of privacy and data.
Why? Well, because I do have some faith in evidence based practice, despite the somewhat flawed way that medical evidence (the EBP “gold standard”) has been implemented. So I do want the government to have some data on me, because I certainly don’t trust private companies more than I do public institutions, and without data, there is no evidence.
So, when I think of EMR, I think first of the good that can come of it.
Yes, there is the clinical potential: possibly reducing adverse drug reactions/interactions, and the like. Yes, likely improving communication between docs working with the same patient. But beyond those (mostly unproven) claims of the potential of the EMR, the potential for research is phenomenal, really. Even the potential for a patient to finally have access to their own, fairly complete, medical records is pretty awesome.
THEN come the “buts”: the caveats, the necessary policies and procedures to ensure optimal stewardship of this type of linkable – and in some cases already linked – data.
I have to say, up front, that there is absolutely the risk of significant breach of privacy with EMRs.
BUT most of this risk already exists. We already carry electronic data. Several existing individual databases that will combine to form the EMR in this province are already personally identifiable and potentially incriminating. Take PharmaNet, for example. PharmaNet tracks every prescription dispensed in the province. It’s made possible some research in BC that hasn’t been done anywhere else (e.g., this cool stuff that some of my colleagues are doing). However, there is certainly a need for good data stewardship, as there’s a chockload of sensitive information in that database (and there have been some noted breaches – e.g. in this .doc from FIPA).
Combining multiple database may raise the ease of identification, and give more information, but what my real concern is isn’t the linking and interoperabilityof the datasets (because, really, if PharmaNet shows an AZT script, does anyone really need corroborating doctor records to out you as HIV+?), but the privacy and security policies and procedures of the data stewards. This is the same concern today as it will be once the EMR is implemented in my province.
So no, I don’t want to Opt Out. Call me deluded, but I want all health care professionals who treat me to have access to appropriate data on my health history. I want the ER staff, when I arrive on a stretcher the day a crazy driver finally plows into my bicycle, to know about my life-threatening medication allergies ASAP.
And I’m not alone. Heck, there are people who want an EMR badly enough that they are trusting companies like Google and Microsoft with their medical information! I certainly can’t claim to fully trust my government, but I’ll take the Ministry of Health over a publicly traded company any day, when it comes to my health care and private information!
HOWEVER, I do want a Real Dialogue and some transparency about the handling of the EMR, as well as other government data. Because while I’m not signing on the Opt Out bandwagon, I do think the concerns about:
- lack of government transparency,
- selection of a US based company managing/holding the information,
- and lack of clarity regarding who will have access to which modules/portions of the EMR
are very valid and legitimately alarming.
We have some pretty good models of data stewardship here. Let’s learn from them, and listen to our privacy advocates and commissioners, as we move toward the inevitable EMR.