Concrete Problems: Experts Caution on Construction of Digital Health Superhighway


If you’re used to health tech meetings filled with go-go entrepreneurs and the investors who love them, a conference of academic technology experts can be jarring.

Speakers repeatedly pointed to portions of the digital health superhighway that sorely need more concrete – in this case, concrete knowledge. One researcher even used the word “humility.”

The gathering was the annual symposium of the American Medical Informatics Association (AMIA). AMIA’s founders were pioneers. Witness the physician featured in a Wall Street Journal story detailing his use of “advanced machines [in] helping diagnose illness” – way back in 1959.

That history should provide a sobering perspective on the distinction between inevitable and imminent (a difference at least as important to investors as intellectuals), even on hot-button topics such as new data uses involving the electronic health record (EHR). 

I’ve been one of the optimists. Earlier this year, my colleague Adrian Gropper and I wrote about pending federal regulations requiring providers to give patients access to their medical record in a format usable by mobile apps. This, we said, could “decisively disrupt medicine’s clinical and economic power structure.”

Indeed, the regulations provide “a base on which innovation can happen,” declared Elise Sweeney Anthony, executive director of the policy office of the Office of the National Coordinator for Health Information Policy, at one session. 

But a base is only that. While Apple has already unveiled an app allowing people to see their health record on their iPhone, as yet there’s no “transformative business model” propelling hospitals to reach out to patients, said Julia Adler-Milstein, director of the Center for Clinical Informatics and Improvement Research at the University of California, San Francisco. Nor is there any indication from her research that many patients are interested.

“It’s still early days,” she added. 

Similarly, Fitbit and Google announced their intent to combine patient-generated health data with clinical information in the EHR well before Fitbit agreed to Google’s $2.1 billion takeover bid. However, researchers studying the implementation requirements for this type of integration see far more than a bit that doesn’t yet fit. 

One challenge for any app using patient-reported health data is standardizing symptom descriptions in a way patients will understand and yet still yields clinically useful results. Not to mention concerns about data validity. (See: “Want to cheat your Fitbit? Try a puppy or power drill.”)

“It’s appropriate to have humility,” said Robert S. Rudin, a senior information scientist at RAND. He added, in language virtually identical to Adler-Milstein’s, “This is still early days.”

A major symposium theme was “proactive health care,” or using patients’ health data to prevent or ameliorate illness. One focus was screening patients for the hodgepodge of food, housing and other non-medical issues known as “social determinants of health” (SDOH).  The process seems straightforward: ask patients about their circumstances, load the answers into a database and apply algorithmic analysis. Out pops guidance for addressing the social and economic factors that account for 40 percent of each individual’s health outcomes, compared to the 20 percent from clinic care.

Once again, however, important elements remain unresolved. Are the questions valid? Can one trust patients’ recall? Does the whole process even improve outcomes? One recent analysis even warned that some “efforts could worsen health and widen health inequities.” 

“I’m not sure we’ve worked out these basic issues,” said Jessica Ancker, an associate professor in Weill Cornell Medicine’s division of health informatics

Of course, academics have their biases (“Further research is needed”), just as entrepreneurs have theirs (“It’s not a bug, it’s a feature”). Not to mention humorist James Boren’s memorable advice to bureaucrats. As I’ve previously suggested, assembling a group of regulators, innovators and evidence-makers to talk candidly with each other might significantly accelerate digital health innovation.

For example, the Google and Ascension Health execs who launched the much-criticized “Project Nightingale”could have have benefited from a blunt warning about big data from Lamiece Hassan, a health data research fellow at England’s University of Manchester.

“People have expectations about what information to share and how that information flows,” she said. “Just because the data are accessible doesn’t make it ethical.”

Michael L. Millenson is president of Health Quality Advisors LLC and adjunct associate professor of medicine at Northwestern University Feinberg School of Medicine. This article originally appeared on Forbes here.

1 reply »

  1. Pretty sure more research is needed before this article can be relied upon!