Electronic Health Records – a VERY BIG deal!

As a member of the generation that doesn’t remember a world without computers, it has been hard for me to really understand the HIV/AIDS community’s opposition to the centralization of electronic health records, in huge databases like Alberta’s Netcare and British Columbia’s E-health.  Opponents have been called luddites, which isn’t quite fair.  Some may be a bit technophobic, but that’s irrelevant.  (Who over 55 hasn’t struggled to make sense of my generation’s lust for continual and instant information exchange?)  The concerns are actually very concrete and very reasonable.  The opposition to the systems that are being implemented has little to do with opposition to digitizing health records in general and much to do with the serious threat they pose to medical confidentiality.  It’s inevitable that information will be wrongly accessed and misused, simply because this system makes it possible and easy to do so.

I am a huge fan of databases (I know, totally nerdy …) just ask anybody that I work with at Positive Women’s Network!  I am also a young person who for most of my adult life has gotten by without a family doctor.  Now that I’m a mother and have actually managed to find a doctor that I love, I’m no longer dependent on drop-in clinics and community health centres.  But for a long time, that’s where my partner and I got our care, and as a result we have records scribbled on paper in at least a dozen manila folders in at least a dozen doctors’ office in various locations around Greater Vancouver, and a few in other provinces as well.  I would love (and would have loved) to be able to get the information in these files to the doctors and specialists that might use them to provide me with better care.  The problems with E-health and Electronic Health Records (EHR) are in the details.

First of all, as BC lawyer Micheal Vonn explained at the 3rd Symposium on HIV, Law and Human Rights, there is an option to set up “disclosure directives” which give patients some control over who accesses their information, but nobody knows about it.  It’s also an incredibly cumbersome process to set up, may not actually work, and frankly, if nobody’s being told about it, it doesn’t matter anyway.  For people living with HIV, because of the stigma that is still attached to this virus, it is incredibly important that patients have control over who gets to see their health records.  So, what if it could be opt-in?  That would certainly help avoid some of the more obvious problems for people.  But there’s an (I think) even bigger problem that has to do with the way information will be accessed and shared.

The handling and sharing of personal health information has always been taken very seriously in Canada.  At PWN, we certainly can’t share any information about you without your written consent, and even then, it’s just for a specific, named purpose.  Doctors have always had to abide by the same rules, except when they refer you to a specialist, but again, that specialist only gets the information relevant to the referral.  With EHR, all your information will be accessible to various professionals in the healthcare field – with different “disciplines” having access to different kinds of health information.  But as long as Dr. Joe has access to health records, there’s nothing stopping him from looking into whether his brother-in-law, who he suspects is gay, might have HIV … which is of course none of his business.  Well, the only thing stopping him is that he’s not supposed to.  Yeah, that works well …  This is HORRIBLE!  It’s hard enough for people living with HIV in small towns to get a prescription filled without outing themselves; this will be a disaster for patient confidentiality.  And scariest of all, the government has the ability to access anything … why does the government need to know my medical history?

An acceptable health records database would be one that pushes relevant information, when your or your doctor request it, to the specialist or other service provider who you have decided needs it (and apparently this is basically how it works now in Canada).  Instead, this database is pull-based, which means it’s a big pool of information that various professionals can dip into and pull information from, basically using the honour system.  Sure, there will undoubtedly be different levels of access, but as long as these levels are accessible to various professionals based on their discipline rather than on patient consent, there is no reason to believe it won’t be misused.

If you want to read more, check out Micheal Vonn’s report, The REAL Impact of the E-health Act and to plunge into the British Columbia opt-out quagmire, visit www.bcoptout.ca.

- Miriam
 

This was posted on Friday, June 10th, 2011 at 10:00 am and is filed under Body Health, HIV and the Law, HIV stigma, News . Feel free to respond, or trackback. Read our comments policy.

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  Healthcare IT Services June 20, 2011 at 4:05 am

  Hi, healthcare it solutions are need of the hour… the trend is catching up! for sure its going to be a big deal of tomorrow.

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