Healthify Blog

Retro Weekend: Thoughts on Privacy and Proactive Care for the Vulnerable

I read this New York Times' article on mining personal health data to help the vulnerable by Dr. Sheri Fink in the New York Times a few weeks ago. While I am glad localities nationwide are taking steps to identify potential health issues for the vulnerable. The two highlighted efforts–eRAD in San Diego and New Orleans' emergency health preparedness–take very different approaches in using data to help the vulnerable.

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The eRAD system in San Diego, for example, seems to hold a lot of promise in addressing the abuse of the health system and identifying a lot of issues. It is ultimately reactive, reliant on (digital) reams of data on emergency service utilization rates. By calling 9-1-1, a patient has essentially "opted-in" to the system, which can then use that data to whatever end they see fit. The responders are in the system as an eponymous service. 

New Orleans' effort seems too proactive and, as Dr. Fink put it in her article, has a "Big Brother" feel to it. There is no option to "opt-in" from any of the beneficiaries who would be targeted in such an effort. I find this troubling. Patients should always be given the opportunity to give their informed consent when their personal health information may be shared. Just because officials may be from the government and are there to help does not mean they should be given a priori access to such sensitive information before an event occurs. 

The Medicare initiative in New Orleans is not reactive and consent is not implicitly given. It sounds as if an official–who is not the vulnerable patient’s healthcare provider or case manager–shows up to verify his/her health information on hand without any prior request. I feel a more appropriate way for this service to be provided should require the beneficiaries in question to sign-up when they are either at the doctor’s office or receiving a visit from their case manager/care coordinator. 

Healthify works with Medicaid beneficiaries towards a similar end. We request patients to "opt-in" for our services at the point of care. When we screen them for their social determinants and then connect them with the most appropriate government or community services, we want to make sure they have given their informed consent. It is more difficult, to be sure, but it is well worth it when establishing trust, which I believe to be the bedrock of better care. 

Continue the conversation about patient privacy in San Diego's program and the larger Medicare initiative to be more prepared in the face of emergencies. Somehow, I feel, the plight of the vulnerable too often gets overlooked in the torrent of healthcare related news. 

Topics: healthcare delivery health disparities