WASHINGTON — Patients need more access to their health data, Sen. Ron Wyden (D-Ore.), ranking member of the Senate Finance Committee, said here Wednesday at the annual Health Datapalooza meeting sponsored by Academy Health.
“The nation is practically drowning in a tsunami of healthcare consumer data,” said Wyden. “Hospitals have it, pharmacies have it, the government’s got it, and our smartphones have it. My sense is that what consumers want is something that’s understandable and user-friendly to help them get better care, help them get more affordable care, and they want their data protected from thieves and ripoff artists and what they call spying eyes.”
And yet, powerful people continue to make excuses for why consumers shouldn’t be able to get this data, he said. “You’ve all heard [powerful] interests say, ‘The sticker price isn’t the real price, you know,’ or ‘The patients will never understand it; it’s all really complicated’ or ‘Every provider charges something different.’ On every issue, when you try to get data, those special interests use those excuses or some version thereof; it’s practically ‘Wash, rinse, and repeat.'”
Wyden outlined four ideas for helping patients access health information:
Making it easier for patients to find out how much their care will cost
For the 200 million Americans who get their health insurance either through Medicare or through a private health insurer, “with one call or going to one place online, these 200 million plus Americans could find out how much they’d have to pay for each service or procedure.” While this may sound far-fetched, it’s not, because Medicare and health insurers already have the needed data, Wyden said.
“It’s not like we’re out there trying to invent toilet paper or something like that — it’s out there … So the government and insurance companies should stop playing keepaway from the American consumer.” The cost information would include the entire episode of care — such as post-surgical followup care.
Giving more information on provider quality
“Americans don’t just want affordable care, they want the highest quality care. It doesn’t do someone much good to get cheap treatment that’s lousy, because they’ll just end up needing more care later,” he said.
“We also don’t want patients unknowingly throwing good money after bad care. So [any price information dispensed should] include data on quality collected by Medicare or health insurance companies, so people can compare options not just on price but also on quality.”
Empowering patients and doctors to get their best deal on drugs
“I’ve put a big focus on the Finance Committee on the need to get lower list prices for unaffordable prescription drugs, to shine a bright light on patents and pricing schemes that the pharmaceutical CEOs guard like Gollum guards his rings,” said Wyden. “And [I want to] hold Big Pharma accountable when they are gouging people with price increases that are unjustified … We’re going to get real with these companies in this session [of Congress] and hope we can get a bipartisan package to stop price gouging.”
Wyden also argued for patients to get more real-time price information. Today, patients who see their doctor “are out the door on the way to the pharmacy with exactly zero idea of what’s ahead in many instances. … They don’t know what their bill is going to look like, whether the lowest-cost drug was prescribed, and whether they’ll get a better deal at the pharmacy down the street,” he said. “I propose making it possible that when physicians log into their electronic health records to prescribe a medicine, a screen would pop up to tell the doctor and the patient what’s available, what the prices are, and where it is.”
Letting patients control their data
Privacy is another important area of healthcare, Wyden said. “The reason privacy is especially important right now is none of the old limits exist. It used to be that Americans got a measure of privacy with healthcare data and everything else because there were things technology couldn’t do — things that technology, by virtue of its limits, was incapable of taking spying eyes in that direction. That’s not the case any longer … I’ve proposed a major privacy reform law… built around the idea that it’s time to stop slapping CEOs on the wrist for violating privacy.”
He noted that these ideas — including the privacy bill — are all non-partisan. “I want to work with you all to make sure privacy protections are iron-clad while allowing for research that improves the health of all Americans,” he said. “That’s where I think we have an opportunity.”