Despite Flaws, Personal Health Records Are Smart Medicine - InformationWeek

InformationWeek is part of the Informa Tech Division of Informa PLC

This site is operated by a business or businesses owned by Informa PLC and all copyright resides with them.Informa PLC's registered office is 5 Howick Place, London SW1P 1WG. Registered in England and Wales. Number 8860726.

Healthcare // Patient Tools
10:41 AM
Paul Cerrato
Paul Cerrato
Connect Directly

Despite Flaws, Personal Health Records Are Smart Medicine

Many consumers have concerns about data breaches; others complain about "Big Brother" watching. Here's my take on why the benefits of PHRs outweigh the risks.

9 Popular Personal Health Record Tools
9 Popular Personal Health Record Tools
(click image for larger view and for slideshow)
In January, I wrote a column about why personal health records (PHRs) have flopped. I've probably had more readers comment on this column than on any other I've written to date. Taking a closer look at those comments provides a microcosm of how Americans feel about these e-tools.

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of a pre-existing condition, assuming for the moment that the federal law prohibiting such denial of coverage was repealed.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.)

We welcome your comments on this topic on our social media channels, or [contact us directly] with questions about the site.
Comment  | 
Print  | 
More Insights
Newest First  |  Oldest First  |  Threaded View
User Rank: Apprentice
4/23/2012 | 2:07:30 PM
re: Despite Flaws, Personal Health Records Are Smart Medicine
In your reply, you say:
'Your premise that "...most healthy Americans don't care all that much about their health-- they take it for granted" is BS.'

And you base that on the attitude of your circle of friend.

That's the weakness in your argument.

I base my conviction that the public doesn't care enough about their health to use a PHR not on my circle of friends but on 30 years of experience as a clinician and teacher, working with a wide variety of patients and students.

Paul Cerrato
InformationWeek Healthcare
User Rank: Apprentice
4/23/2012 | 1:45:35 PM
re: Despite Flaws, Personal Health Records Are Smart Medicine
The failure of the Microsoft & Google PHR initiative should make it obvious that folks don't want this.

Apparently there is a limit to how much privacy people are willing to give up.

Your premise that "...most healthy Americans don't care all that much about their health-- they take it for granted" is BS.

My family & I are healthy...because we care - if I took it for granted I'd probably weigh 250 pounds. I'm not aware of anyone in my circle of friends that takes their health for granted.

I don't like the idea of a PHR for the privacy/paranoid reasons mentioned.

That said, there are obviously people with certain health situations that a PHR would benefit. Heck is a low-tech bracelet can help a diabetic, a PHR stored in that bracelet may even be better.

Realize those with certain health situations, like diabetes, seem to be less concerned about privacy. A good friend growing up, a diabetic, had needles at everyone's home...even in my glove box, which does take some explaining when pulled over by the police.

The point being, a diabetic knows it is beneficial for people to be aware of their condition - this is not the case for healthy individuals or others.

Just because something is smart to do, does not mean people will want to do it.
User Rank: Apprentice
4/20/2012 | 5:32:47 AM
re: Despite Flaws, Personal Health Records Are Smart Medicine
While individual practices are implementing portals that integrate with their office EHR to meet MU criteria and interact with their patient population, most are not forward thinking (or even know enough) to send their patients to a HealthVault or one of the other PHR integrators. Imagine being patient with multiple chronic conditions where perhaps you see 4 or 5 unrelated specialists in addition to your PCP that all use a different portal/PHR?!?

Julie C.
InformationWeek contributor
The State of Chatbots: Pandemic Edition
Jessica Davis, Senior Editor, Enterprise Apps,  9/10/2020
Deloitte on Cloud, the Edge, and Enterprise Expectations
Joao-Pierre S. Ruth, Senior Writer,  9/14/2020
Data Science: How the Pandemic Has Affected 10 Popular Jobs
Cynthia Harvey, Freelance Journalist, InformationWeek,  9/9/2020
White Papers
Register for InformationWeek Newsletters
Current Issue
IT Automation Transforms Network Management
In this special report we will examine the layers of automation and orchestration in IT operations, and how they can provide high availability and greater scale for modern applications and business demands.
Flash Poll