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Is data the new paternalistic force in medicine?

The paternalistic worldview of the “doctor knows best” is (largely) on the way out. But what if it’s replaced by data? Could data one day silence the intangible reasons patients have for requesting different therapies; or be used to deny certain therapies based on a set of probabilities?

We’ve come along way with patient engagement. In yesteryear, most physicians made decisions without educating and including the perspective of the individual and their family.

The “doctor knows best,” as the saying goes.

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That paternalistic worldview is, thankfully, on the way out. But what if it’s replaced by data? Could data one day silence the intangible reasons patients may have for requesting different therapies? Could it be used to deny certain therapies to individuals because the odds are against them?

It’s an issue that unexpectedly surfaced during a panel discussion at the MedCity CONVERGE conference in Philadelphia on Tuesday.

Ryan Egeland, senior director of business development and licensing at Medtronic, recounted a story from his early M.D. days that underscored the need for human judgment and empathy.

The anecdote drew from one Egeland’s first patients as a newly-minted resident. Things were not looking good, he said. The team had run out of feasible treatment options, but the patient pleaded for further interventions. 

“If you were to run data analytics on this patient’s chart, there would be no indication that this patient should ever receive surgery or therapy,” Egeland told the audience.

Every salvage effort had been tried and any additional therapy was contraindicated by every published journal paper available at the time, he said. At a glance, the right course of action was a no-brainer.

“But as I got to know the patient and I got to know the family, there were compelling emotional reasons that this patient wanted therapy,” Egeland recounted.

In the end, the medical team acquiesced. The patient was given therapy, “contrary to all clinical evidence,” he said.

That patient died. Egeland pronounced his death — one of his first as an aspiring doctor. Yet he maintains that the added interventions were “the right thing to do for the patient.”

It was a surprising twist on a panel about investing in cancer therapies, which typically turned to the myriad benefits of Big Data. Egeland is far from opposed to the revolution; Medtronics is heavily investing in robotics. Yet he remains anchored by his experiences as a practicing physician and believes the needs of the individual can’t always be converted into ones and zeroes.

“The paternalistic views of medicine, meaning that data can make us all feel better, I think is sometimes missing the broader picture of what medicine is,” Egeland shared. “It’s an art, not a science.”

Part of the problem is that data reflect population-wide averages; medicine is charged with treating the individual. So what do we do with long odds?

Some drugs benefit just a small fraction of patients. For example, if 100 women were treated for two years with Puma Biotechnology’s newly-approved breast cancer drug neratinib (Nerlynx), just two would be spared a recurrence as a result of taking the drug. What’s more, it’s expected to cost $10,500 per month per patient and nearly all will experience side effects.

For payers, the numbers might not add up. Yet for eligible individuals with a cancer diagnosis, the calculations are completely different. Do data and statistics win; or does the patient get a shot?

Even as advances in precision medicine enhance the information doctors have to guide a patient’s care, new subjective areas will inevitably arise. Based on recent approvals, FDA also seems to be moving towards a more lenient approach to drug approvals, removing its role as a gatekeeper for value and efficacy.

The important thing to remember is that humans control data. It’s a tool that can be used to empower patients and advocate for their care. Or it can be used to patronize and override certain stakeholders in the process. Which will it be?

Let’s stop and think before the proverb “data knows best” becomes widespread.

Photo: turk_stock_photographer, Getty Images

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