I learned this week that a loved one who has been battling cancer for many years was encouraged to sign up for an online personal health record (PHR) called Caring 4 Cancer. It’s a perfect example of the kind of PHR that I think can be dangerous for patients because there is no privacy.
Even their privacy statement (a misnomer — it should be called a No Privacy Statement) tells you that they are not required to follow HIPAA regulations. And I love this: the mission statement is this: “increase efficiencies for Physicians, Patients, Pharmaceutical companies, and Payers.” Uh-huh. Exactly what efficiencies does this take care of for patients? The efficiency of stripping them of their privacy?
I actually spent quite a bit of time on their website. There is some excellent information there — and I don’t discourage anyone from using the website to find articles or to use the message boards. I DO discourage you from sharing any information that can identify you personally — so where they ask for your mailing address or phone number or — ? — don’t do it! Make up some bogus information and set up an email address through some other means beside your main email address.
Yes, there is plenty of advertising — to your best ability, ignore it if you can. That’s the price of a “free” online application.
Here’s the part that gets me. Evidently there was someone right there in the oncologist’s office to encourage my loved one to sign up for the program….
As you know well in every other aspect of your life, there is no such thing as a free lunch. And thus it is true here, too. Only in this case, it could come at the cost of purchasing health or life insurance in the future, spam in your email box, junk in your postal mail box, or — who knows what they’ll dream up next?
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