Monday, January 20, 2014

Privacy Rules vs Care Delivery

In medical IT, we are often asked about HIPAA compliance, much in the way the Brothers Grimm probably asked little children about being in the woods: scare us into doing the "right" (ie legal liability lowering) thing.

When people say "HIPAA" generally I assume that they mean the privacy rule of HIPPA, specifically, which Wikipedia summarizes thusly:  (go here for the full text)

The HIPAA Privacy Rule regulates the use and disclosure of Protected Health Information (PHI) held by "covered entities" (generally, health care clearinghouses, employer sponsored health plans, health insurers, and medical service providers that engage in certain transactions.)[17] By regulation, the Department of Health and Human Services extended the HIPAA privacy rule to independent contractors of covered entities who fit within the definition of "business associates".[18] PHI is any information held by a covered entity which concerns health status, provision of health care, or payment for health care that can be linked to an individual.[19] This is interpreted rather broadly and includes any part of an individual's medical record or payment history. Covered entities must disclose PHI to the individual within 30 days upon request.[20] They also must disclose PHI when required to do so by law such as reporting suspected child abuse to state child welfare agencies.[21]

So is the primary goal to maintain privacy or deliver effective healthcare? If you said "both, of course!" then I must respectful say "balderdash!" I am well aware of the standard privacy advocate claim that one can easily do both, at the same time, with no loss of effectiveness. It is my experience that not only do the two goals not co-exist, they also work against each other in many instances.

In lab IT, this is most often the following tension: deliver lab results quickly to whoever might need them--nurses, PAs, MDs, NPs versus ensure that every access is by a care giver, specifically a care giver who is part of this patient's team. Even if the IT system user is a nurse who was doing something else when she was asked by a code team member to look up something on behalf of a caregiver who is currently not in a position to authenticate themselves.

When I ask privacy advocates how to balance these concerns the most common response is the claim that there is no problem: if IT does its job, then all required data will always be disclosed to the correct parties, but not the incorrect parties, in a timely manner. As someone who actually deploys systems in the real world, I find this answer supremely unhelpful.

When I ask security professionals how to balance these concerns, they ask me to restate my question as a risk:benefit statement, at which point they will help me figure out how much security to combat which risk. But when I respond that the risk is that security will interfere with the delivery of healthcare, I am referred to the standard menu of risks from which I may pick:
  • leaking information to blackmailers
  • leaking information to underwriters (insurers)
  • leaking information to the public

This company has a nice way to frame a conversation with a CISO, assuming that the organization is not a health care provider. You can find that conversation starter here:

But working in medical IT, I feel that I need a solution that takes into account some other considerations:
  • NOT disclosing information may harm someone, so I do not want to use solutions which assume that all disclosure is bad
  • disclosing information to unauthorized health care providers is often covered by other legal means, eg medical licensing so isn't that "breach" of rather low signifigance?
  • the information does not belong to the parent organization in the first place so taking steps to protect it must include ways to share it on demand
If anyone knows of a privacy policy, implementable for an actual lab information system, please let me know. I would love to stop trying to meet privacy rules in an environment where failure to disclose in a timely manner could kill someone.

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