Tag: Michael L. Millenson

Artificial Intelligence Plus Data Democratization Requires New Health Care Framework


The latest draft government strategic plan for health information technology pledges to support health information sharing among individuals, health care providers and others “so that they can make informed decisions and create better health outcomes.”

Those good intentions notwithstanding, the current health data landscape is dramatically different from when the organizational author of the plan, the Office of the National Coordinator for Health IT, formed two decades ago. As Price and Cohen have pointed out, entities subject to federal Health Insurance Portability and Accountability Act (HIPAA) requirements represent just the tip of the informational iceberg. Looming larger are health information generated by non-HIPAA-covered entities, user-generated health information, and non-health information being used to generate inferences about treatment and health improvement.

Meanwhile, the content of health information, its capabilities, and, crucially, the loci of control are all undergoing radical shifts due to the combined effects of data democratization and artificial intelligence. The increasing sophistication of consumer-facing AI tools such as biometric monitoring and web-based analytics are being seen as a harbinger of “fundamental changes” in interactions between health care professionals and patients.

In that context, a framework of information sharing I’ve called “collaborative health” could help proactively create a therapeutic alliance designed to respond to the emerging new realities of the AI age.

The term (not be confused with the interprofessional coordination known as “collaborative care”) describes a shifting constellation of relationships for health maintenance and sickness care shaped by individuals based on their life circumstances. At a time when people can increasingly find, create, control, and act upon an unprecedented breadth and depth of personalized information, the traditional care system will often remain a part of these relationships, but not always. For example, a review of breast cancer apps found that about one-third now use individualized, patient-reported health data obtained outside traditional care settings.

Collaborative health has three core principles: shared information, shared engagement, and shared accountability. They are meant to enable a framework of mutual trust and obligation with which to address the clinical, ethical, and legal issues AI and data democratization are bringing to the fore. As the white paper AI Rights for Patients noted, digital technologies can be vital tools, but they can also expose patients to privacy breaches, illegal data sharing and other “cyber harms.” Involving patients “is not just a moral imperative; it is foundational to the responsible and effective deployment of AI in health and in care.” (While “responsible” is not defined, one plausible definition might be “defensible to a jury.”)

Below is a brief description of how collaborative health principles might apply in practice.

Shared information

While the OurNotes initiative represents a model for co-creation of information with clinicians, important non-traditional inputs that should be shared are still generally absent from the record. These might include not just patient-provided data from vetted wearables and sensors, but also information from important non-traditional providers, such as the online fertility companies often accessed through an employee benefit. Whatever is in the record, the 21st Century Cures Act and subsequent regulations addressing interoperability through mechanisms such as Fast Healthcare Interoperability Resources more commonly known as FHIR have made much of that information available for patients to access and share electronically with whomever they choose.

Provider sharing of non-traditional information that comes from outside the EHR could be more problematic. So-called “commercially available information,” not protected by HIPAA, is being used to generate inferences about health improvement interventions. Individually identified data can include shopping habits, online searches, living arrangements and many other variables analyzed by proprietary AI algorithms that have undergone no public scrutiny for accuracy or bias. Since use by providers is often motivated by value-based payment incentives, voluntary disclosure will distance clinicians from a questionable form of surveillance capitalism.

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XX Marks the Spot: Why Did Women Tech Experts Rule at DC Health Data Confab?


Three government experts on a health tech conference panel discuss the urgency of releasing actionable data; all are women. A more senior official, another woman, gives a TED-style talk making the same case. And a four-person, private-sector panel debates privacy and ethics; three of the four are female.

Health Datapalooza, a conference begun with government sponsorship a decade ago, proclaims its goal as “data liberación” – freeing health data from deep within federal agencies and giving it to patients and entrepreneurs. But in 2019, women’s “liberación” seems to have become an unspoken sub-theme.

Interestingly, while women’s status in tech was the focus of a plenary panel on diversity and inclusion, the panelists seemed oblivious to the robust participation of women in their own meeting.

To put some data behind my subjective impressions, I went back and examined the list of speakers, who came from a wide range of organizations and included individual patient activists. I counted 89 men and 99 women. Liberación, indeed.

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NEJM Blasts “Crusade,” Omits that Its Former Editor Launched It

A blistering attack by the national editor of the New England Journal of Medicine against the “less is more” movement in medicine omitted that the publication’s former editor-in-chief played a foundational role in popularizing the idea of widespread medical waste.

The commentary in late December by Dr. Lisa Rosenbaum, “The Less-Is-More Crusade – Are We Overmedicalizing or Oversimplifying?” has attracted intense attention.  Rosenbaum berates a “missionary zeal” to reduce putative overtreatment that she says is putting dangerous pressure on physicians to abstain from recommending some helpful treatments. She also asserts that the research by Dartmouth investigators and others who claim 30 percent waste in U.S. health care, in which she once fervently believed, is actually based on suspect methodology.

What Rosenbaum fails to mention is that the policy consensus she seeks to puncture – that the sheer magnitude of wasted dollars in U.S. health care offers “the promise of a solution without trade-offs” – originated in the speeches, articles and editorials of the late Dr. Arnold Relman, the New England Journal’s editor from 1977 to 1991.Continue reading…

The Profitability (or Not) of Harming Patients

millenson-headshotWhen the government announced recently that a patient safety partnership with hospitals had saved 87,000 lives and nearly $20 billion over four years, there was an oblique reference to the role played by “financial incentives.”

Left unsaid was that a quiet effort has been going on for years to persuade hospitals they can make more money preventing harm than by allowing it to occur. In recent years, that’s included articles in the medical literature looking at the profitability of preventing serious bloodstream infections in critically ill infants in the neonatal intensive care unit(NICU) and in kids with leukemia.

For adults, there have been analyses of the financial impact of serious infections and surgical complications. In a presentation I heard earlier this year, a vendor mentioned the return on investment (ROI) of a technology that more rapidly detects when a post-surgical patient unexpectedly stops breathing.

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