Would you want access to your own medical records?

I still struggle to get simple, ubiquitous access to my health records. Trying to get my health history every time I see a specialist, giving my doctor to access my lab records, and even the extraordinarily mundane task of trying to get a copy of my daughters’ immunization records every school year — the experience is generally the same: impossibly frustrating. Tangles of red tape and labyrinthine requirements, no end in sight. If I’m lucky, multiple phone calls harassing various administrative offices begging for my records can lead to a PDF of my records, but that’s about it.

This is not the user experience modern healthcare consumers expect in today’s increasingly digital and interconnected world. Wrote this article on the hot debate of interoperability .Would like to understand your take from a consumer perspective.Could API tech be the connector for this information?

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Not applicable
@Aashima Gupta

I certainly would like simpler access to my medical records. The whole notion of having to ASK your doctor for a copy of records when seeking a second opinion or looking to change doctors is a level of friction, caused by simple social factors, that needs to be eliminated. APIs are the enabling piece. We also have to consider who owns the information - and who needs to know who has access to it. That is, simply getting access to my medical records from say 15 unrelated providers is a plus, but I don't want them to know if I am sharing that info, or with whom.

Finally, and you allude to it, is the notion of being a caregiver. There needs to be a simple way for someone to be granted permission to access the records and act on behalf of someone. The stack of legal mumbojumbo that I signed and is sitting in my desk is not going to help out my mom in a sudden emergency - she needs someone with both the legal authority and the requisite information to act on her behalf, quickly, to help her get the care she needs.

With the friction out of the way, there will be more time for thoughtful action, more personal care, and hopefully better outcomes.

I should also point out that I have been using HealthVault via my local hospital for many years now. It is only in the last few months that this has become valuable to me - and frankly is also resulting in me selecting doctors in their ecosystem. Also as more devices are tied in, I can get more valuable information to my doctors - observations over long stretches of time, not just in office time. Actually am seeing better collaboration between my GP and Specialists and that alone is valuable. So what I am saying is that while there is patient choice over care providers, the doctors who are participating in an ecosystem of digital health records and other connected services - built on APIs - will be the ones who are getting my dollars moving forward.

coolidm
Participant I

It is no secret healthcare is far behind in these regards. You could blame the EMR vendors, provider fragmentation, or lack of financial incentives but what we are left with is a mismatch of systems and non standard methods of documentation. Even within a single hospital or department, documenting a procedure or intervention could be wildly different. There are even some places that still rely largely on paper documentation and large document management systems which only makes this harder. That said, as consumers we need to demand access to our health data. In many cases patient portals\apps are providing enough value. It's common to be able to review problems, appointments, pending procedures, etc and even request medication refills or schedule future appointments, but very rarely is that something available via an API or discrete data extract.

I think in the next few years we will be able to gauge the demand for consumer access. There will be more progress in the space of large system to system integration between trusted entities. This will improve mobility across providers and reduce costs, but there are harder problems with open access such as establishing identity and validating authorized access to records. The incentives aren't there yet and a well supported patient portal might just provide enough for most consumers (including surrogate/guardian functionality).