Tag Archives: Deborah Peel

govhealthit.com: Q&A – Privacy activism in the age of Big Data

Read a very useful interview with Deborah Peel, MD, founder of the group Patient Privacy Rights, on govhealthit.com.

We chose an interesting sample:

Q: Your website cites a number of fairly nefarious and invasive scenarios: “If a school or university learns your child has ADHD or is being treated for depression, they may deny admission. If a boss knows you take Xanax or Zoloft, they may reconsider your promotion.” Wouldn’t both of those practices be illegal?

A: Of course it’s all illegal, using people’s information against them. But there’s no way that the poor employee can even know until later that’s something’s happened. For example, I can’t tell you how many stories psychiatrists hear about where somebody’s been out for two weeks for depression. They go back in, they’re assigned to a completely new job, and they end up quitting. How are they going to ever prove or know who looked at their records when there is no chain of custody? That’s the other thing that electronic records can prove: you can’t move them, you can’t open them, you can’t see them, without there being a transaction.

[Q&A: Health org’s don’t protect patient data for reasons dating ‘back to the industrial revolution’]

One of the things that we have lobbied for is a chain of custody and accounting of disclosures. And we did get that into the HITECH Act. You’re supposed to be able to get a chain of some disclosure, three years of all disclosures of electronic data from your EHR. They don’t even have the rules yet for how we can get disclosures of electronic health records — not from pharmacies, not from labs, not from insurers, not from all the other clearinghouses. What we really need is a chain of custody for all of health data, wherever it is. Because we don’t even know that, there’s no way to prove harm. One of our major projects right now is we’re working really hard with Harvard and Latanya Sweeney to raise the funds to build a data map. We do not even know how many entities have our information or what they’re doing with it. So how can we weigh risks and benefits, when we have institutional control of information, not patient control?

US Department of Health and Human Services, asked to get involved in guidance for handling patient data

Healthcareitnews.com writes that Texas-based advocacy group called Patient Privacy Rights asked DHH to create cloud-computing guidelines around the issues of secure infrastructure, security standards and business associate agreements with regard to the protection of patients’ personal data.

♣ In April, the Department of Health and Human Services reached a $100,000 HIPAA settlement with Phoenix Cardiac Surgery, after the small physician practice had managed clinical and surgical appointments, between 2007 and 2009, using an Internet-based calendar that also happened to be publicly-available.

♥ The Internet being the most ubiquitous form of cloud computing, an Austin, Texas-based advocacy group called Patient Privacy Rights is pointing to the Phoenix Cardiac Surgery HIPAA violation as an example of why HHS should regulate, or at least guide, cloud use in healthcare.

♠ In a letter to the HHS Office for Civil Rights, Patient Privacy Rights founder and chair Deborah Peel, MD, wrote that “Issuing guidance to strengthen and clarify cloud-based protections for data security and privacy will help assure patients (that) sensitive health data they share with their physicians and other health care professionals will be protected”.

♦ Cloud-computing is proving to be valuable, Peel said, but the nation’s transition to electronic health records will be slowed “if patients do not have assurances that their personal medical information will always have comprehensive and meaningful security and privacy protections.”

Read the whole story HERE.