My position in that column was that PHRs haven't taken off because most healthy Americans don't care all that much about their health-- they take it for granted. I still maintain that's one of the reasons for the public's apathy, but the comments on our website make it clear there are many other important reasons. The biggest one seems to be a deep distrust of the healthcare system.
One commenter, who calls himself Tronman, summed up this concern, "Thanks, but no thanks. I can take care of myself and I don't need some busybody 'health' organization sticking their nose in my personal business." Others were worried that "Big Brother" or an insurance carrier might use the information in a PHR as ammunition to deny coverage of a pre-existing condition, assuming for the moment that the federal law prohibiting such denial of coverage was repealed.
[ Most of the largest healthcare data security and privacy breaches have involved lost or stolen mobile computing devices. For possible solutions, see 7 Tools To Tighten Healthcare Data Security. ]
AdvocatePrivacy, another commenter, said, "... if consumers cannot get past the frightening headlines of ID theft and out of control data losses then the benefit will never be realized past the point of consideration."
Another reason for not using PHRs, readers said, was the inconvenience of using such programs, which require too many passwords, mouse clicks, and related hurdles. One IT pro, teddertn, who was commenting specifically about patient portals, said that in his experience, patients would much rather use simple email to communicate with their doctor then jump through all the hoops required to enter data into a portal. In his words, "After a year and a half of really aggressively recruiting our patients to sign up for the portal, we got only 10% signed up. My gut feeling is that the process of using the portal is just too complex and inconvenient."
That's quite a list of negatives: mistrust, apathy, inconvenience, and fear of data breaches. Will PHR providers ever overcome them all? Not anytime soon, but despite all these concerns, I still believe the benefits of a PHR outweigh its risks for many patients--especially adults with chronic disorders and the parents of children with life-threatening diseases.
A PHR is a valuable asset for what consumer advocacy groups like to call the "activated patient." An activated patient is one who's fully involved in diagnostic and treatment decisions and views her practitioner as a partner, not an all-knowing father figure.
PHRs are just one more tool to help these folks make informed decisions based on all the facts. When used deftly, these tools provide more control of medical care, not less, especially if activated patients couple them with a determination to get the kind of "full disclosure" care they're entitled to. That care includes access to all one's hospital and office records and disclosure of any conflict of interest on the part of practitioners who might be invested in drug and medical equipment companies.
In the end, we each have to weigh the advantages and disadvantages of a PHR and find the features that best suit our needs. Our slide show on nine popular PHRs is a good starting point.
The 2012 InformationWeek Healthcare IT Priorities Survey finds that grabbing federal incentive dollars and meeting pay-for-performance mandates are the top issues facing IT execs. Find out more in the new, all-digital Time To Deliver issue of InformationWeek Healthcare. (Free registration required.)