Judy O’Rourke
Patient data rights has become an important issue for the lab industry and segues into broader discussions about health care reform. It’s possible that under current state statutes, only about half of the people in the United States have direct access to their personal lab data.
The Department of Health and Human Services (HHS) recently proposed new rules that would widen peoples’ rights to see their personal health information, and, it is hoped, learn more about their health and better protect it.
Advances in diagnostics and near-patient testing are churning out reams of health data, and advances in information technology mean many are able to reach out and “touch” almost anything. Minus the jargon, Web sites such as Lab Tests Online make even the most complex conditions and unpronounceable tests understandable for the average person. We would be asking people to connect the dots—get the hard facts to understand their health status and to be proactive and vigilant (with diabetes, allergy, postop results, medical follow-up).
You may wonder if the proposed rules would invalidate HIPAA regulations. Not as presented thus far, as long as the information is given only to patients or their personal representatives.
A large diagnostic testing lab might fulfill more than a million requests for direct patient data a year, and while the information may have been sent mostly by fax, mobile health apps are becoming a popular tool for accessing this data. For labs that already provide data access to patients in a number of states, the transition could largely entail extending current systems into new states.
Maybe you back the concept of giving people more responsibility for monitoring their health status. Have you thought about risks of this broader arc of access?
Does the potential for medical privacy breaches give you pause? The New York Times recently reported on a breach involving an unauthorized third-party posting of 20,000 emergency department patients’ records (names, diagnosis codes) from Stanford Hospital in Palo Alto, Calif. The post remained online for a year before it was discovered (www.nytimes.com/2011/09/09/us/09breach.html?_r=1). HHS confirms personal medical data for millions of people have been wrongly exposed during just the past couple of years,
How might providing patients greater access to lab results affect your lab? Write me. I know you’re busy, so be brief.
Judy O’Rourke
Editor, CLP
(818) 716-6873
