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Feigning Shock: Why Wouldn’t Tech Giants Use Patient Data?

Last week, the Wall Street Journal published a story on Project Nightingale, a so-called secret effort by Google to partner with provider organizations in the aggregation and analysis of patient data from millions of records across 21 states. The hope of the project is ostensibly to bring disparate data sources together in the cloud.

While Google has made it clear that they’re compliant with the relevant privacy standards, the story hasn’t exactly received resounding applause online. In a generation already paranoid about navigating privacy online, a hostile response is unsurprising.

HIPAA Concerns

Tweet with HIPAA complaintPart of the frustration comes from a lack of understanding about HIPAA. Given how often we see people within healthcare misunderstand what is and isn’t a violation of HIPAA, I don’t think we can expect an average consumer to have a solid understanding of it themselves. However, even when people understand that HIPAA wasn’t in fact violated through Project Nightingale, it still leaves a sour taste in their mouths.

Not a HIPAA violation twitter conversation
This speaks to a critical difference between how health systems and patients view the EHR. I have no doubt that the health system involved in this project has nothing but good intentions for partnering with Google.

I’m not even convinced that the project is a bad idea! Google manages data better than probably any other organization on the planet on a large scale; putting their expertise behind a healthcare data set could yield fantastic outcomes for population health efforts and the incorporation of SDOH into care. Or it could simply make interoperable data actually useful within the clinical workflow.

Who Owns Patient Data?

Patients are frustrated because Ascension treated EHR data as wholly owned by the IDN, but the patients consider that data to be theirs. And here’s the thing: intrinsically, we know that patient data should belong to the patient. If Google and Ascension had partnered to aggregate Cerner Advance data, we would have read about it in Health IT News as a footnote. Instead, the deal appears in the Wall Street Journal, painted with all the trappings of a clandestine backroom deal. You can argue that the Wall Street Journal intentionally crafted the story to fan the flames of public outrage, but this conflict of ownership between patient and provider existed long before Google came on the scene.

Since the mass adoption of tech starting in 2009, EHRs have been misaligned with patients’ interests. As a core tool of digital healthcare, the EHR is built around meaningful use regulations and the ability to support billing on the back end, but it is not built to make sure that patients own their records. Beyond that, many clinicians still feel that the patient record belongs to them and the care team as a place for their notes and coordination efforts. They want to avoid intrusive, well-intentioned but ultimately off-base questions and objections. That is the motivation for clinicians’ resistance to movements like OpenNotes.

At the end of the day, when the system that generates the note is owned by the health system, when it was designed for billers and data entry, and when the end users themselves don’t want patients to see what is being input, are we really that shocked that a health system would partner with Silicon Valley to suck in patient data without telling patients? It is the natural outcome of a system that does not believe patients own their record.

Patient Engagement

KLAS tweet about patient engagementAs I write this, I’m sitting in the Patient Engagement Summit hosted by KLAS. For two days, 50 leaders from various vendor and provider groups have come together to discuss this top-of-mind market. The goal of this summit is to solidify a framework that will drive research for the coming year. Not an easy task, but thankfully it was framed in the right way.

Erin Moore, the keynote speaker, spoke as a patient advocate, sharing her why with this group of leaders. Her child has cystic fibrosis, and she walked the audience through what it means to be engaged from a patient perspective.

Tweet about engaged patientsShe explained that that often means less adherence to prescribed patient engagement protocols and more wrestling with red tape in order to have one-on-one discussions with care providers.

Her address was perhaps the perfect way to kick off a summit on patient engagement; Erin’s impassioned personal experiences helped the group remove their provider or payer hats and instead come at the problem from a different perspective. It shifted the event from a room of thought leaders to a room of humans—humans with the knowledge and skills necessary to drive change for the industry. From that point, discussions became focused on what changes providers need to make to align their needs to the patients’ needs (instead of the other way around). I can’t say for sure whether I think that the patient should be the ultimate owner of his or her patient record. But I can say that patients deserve much more input in how and when the data they generate is used.




     Photo cred: Adobe Stock, ramsah