re: Why Personal Health Records Have Flopped
There are three main reasons I think people don't want to use centralized data repositories for their PHR: Trust, Trust, and Trust.
There are all of these supposed "security measures" in place to keep data secure.
All of them rely on insecure means of communicating passwords and keys -- the telephone, FAX, and in-person communications, all of which can be overhead or intercepted by anybody. It's a joke!
Every time I contact a healthcare provider, I'm asked to repeat my several pieces of "verifying" information, and most of the time anybody within earshot can hear what I'm saying. This has got to be the worst possible solution!
As far as centralized PHRs go, the reason to avoid them is simple: virtually every insurance plan on the planet contains a clause that says that, in exchange for paying some of your medical costs, the insurer can do whatever they want with your medical information, including sharing it with whomever they like.
Obamacare may have eliminated the ability of insurers to deny coverage for pre-existing conditions, but I have no allusions that insurers are still collecting and analyzing our medical data and using it to build profiles. We have no access to the personal profiles they create about us; we have no say in how, when, or why they're used; and at some point in the future, if the laws change to allow insurers to again deny coverage based on pre-existing conditions, you can bet they'll be far better armed to deny more than ever.
To make matters worse, Republicans seem bound and determined to either repeal Obamacare in its entirety, or else give insurers and Big Pharma even more access to PHR data and keep their uses off-limits to consumers.
We've got several generations of consumers who have been basically trained that "pre-existing conditions won't be covered". The best way to deal with this is to not know.
The fact is, if you know about something "early", the insurance companies can make a case that such knowledge constitutes a "pre-existing condition" and they can deny coverage for it. Well, they could; now they can't. But old habits die hard.
If the medical industry wants to shift consumer attitudes towards prevention, then they need to make it more transparent how our "preventive" PHR records are being used IN TOTALITY, including a guarantee that data collected for PREVENTIVE PURPOSES will NOT, EVER, be used in the future to deny a claim.
I mean ... why should I get regular colonoscopies if they may lead to denial of coverage for something at some point in the future that could bankrupt me?
If neither I nor my doctors have a reason to believe there's a problem, there's a far greater likelihood that something will be covered down the line.
And with the way insurance companies use our PHR data, who's to say they won't build profiles that are more accurate at developing predictive models that will be used in the future to deny coverage if the laws change? There's no "opt-out" option in this database! And our elected officials clearly cannot be trusted to implement laws and policies that are in the best long-term interests in consumers.
Until these things change, I'm afraid that "ignorance is bliss" is perhaps the safest route to take.