This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”
In our previous post, we described the “Wild West of Unprotected Health Data.” Will the cavalry arrive to protect the vast quantities of your personal health data that are broadly unprotected from sharing and use by third parties?
Congress is seriously considering legislation to better
protect the privacy of consumers’ personal data, given the patchwork of
existing privacy protections. For the most part, the bills, while they may
cover some health data, are not focused just on health data – with one
exception: the “Protecting Personal Health Data Act” (S.1842), introduced by
Senators Klobuchar and Murkowski.
In this series, we committed to looking across all of the
various privacy bills pending in Congress and identifying trends,
commonalities, and differences in their approaches. But we think this bill,
because of its exclusive health focus, deserves its own post. Concerns about
health privacy outside of HIPAA are receiving increased attention in light of
the push for interoperability, which makes this bill both timely and
potentially worth of your attention.
For example, greater interoperability with patients means that even more medical and claims data will flow outside of HIPAA to the “Wild West.” The American Medical Association noted:
“If patients access their health
data—some of which could contain family history and could be sensitive—through
a smartphone, they must have a clear understanding of the potential uses of
that data by app developers. Most patients will not be aware of who has access
to their medical information, how and why they received it, and how it is being
used (for example, an app may collect or use information for its own purposes,
such as an insurer using health information to limit/exclude coverage for
certain services, or may sell information to clients such as to an employer or
a landlord). The downstream consequences of data being used in this way may
ultimately erode a patient’s privacy and willingness to disclose information to
his or her physician.”
In 1807, in an effort to spite the British and French for shipping interference (and forced recruitment of American citizens into military service), the United States Congress passed an Embargo Act, effectively shutting down trade with these two countries. Britain and France quickly found other trading partners; the US, then limited in our capacity to sell products outside our borders, was left with a devastated economy and a gaping hole in our face. It took only weeks before Congress passed a loophole; they repealed the act within 15 months of its passing. It was a great lesson in unintended consequences.
Today, ignoring history, both Republicans and Democrats seem to spar continuously around healthcare: whether the message is about tearing down the Affordable Care Act or about some version of Medicare (For-All, For Whoever Wants It, For America, or For Better or Worse), both parties are terribly wrong.
Assuming the social imperative for healthcare is to eliminate preventable morbidity and disability (and associated costs) and improve (or sustain) quality of health of all our citizens (in order to help as many of them as possible remain productive, contributing members of society), another approach to ‘universal care” would be to flip the figure/ground relationship for our current efforts: instead of developing better payment systems, let’s develop and commit to a universal clinical operating framework that ensures that every member of society has the same opportunity to optimize their health status.
“Centralizing” the methodology around a universal model for how we plan for care, and allocate resources to ensure care plan goal achievement, would be far more valuable to society than centralizing the sources of funds to pay for care, because then we’d know what we’re paying for.
Today on Health in 2 Point 00, we have another takeover edition! On Episode 92, Jess talks to Louise Schaper, CEO of the Health Informatics Society of Australia (HISA) at HIC 2019. Louise’s key takeaway from the conference is that health tech in Australia is focused on humanity and improving outcomes for all people. Jess also asks Louise about the Australian Digital Health Agency’s MyHealthRecord, an online summary of individuals’ health information. It’s got a great participation rate with 90% of Australians opted in, but it’s not being utilized as much as it could be. Finally, Louise debunks some of the chatter around HealthEngine’s data scandal in which they were caught sharing health data with law firms. The thing is, the press has sold it as if they have full access to your medical data and has sold that, but that’s not the case.
An official of a health system in North Carolina sent an email to
the entire board of the North Carolina State Health Plan calling them a bunch
of “sorry SOBs” who would “burn in hell” after they
“bankrupt every hospital in the state.”
Wow. He sounds rather upset. He sounds angry and afraid. He
sounds surprised, gobsmacked, face-palming.
Bless his heart. I get it, I really do. Well, I get the fear and
pain. Here’s what I don’t get: the surprise, the tone of, “This came out
of nowhere! Why didn’t anyone tell us this was coming?”
Brother, we did. We have been. As loudly as we can. For years.
Two things to notice here:
What is he so upset about? Under State Treasurer
Dale Folwell’s leadership, the State Health Plan has pegged its payments to
hospitals and other medical providers in the state to a range of roughly 200%
of Medicare payments (with special help for rural hospitals and other
exceptions). In an industry that routinely says that Medicare covers 90% of
their costs, this actually sounds rather generous.
What is the State Health Plan? It’s not a payer,
that is, an insurer. It’s a buyer. Buyers play under a different set of rules
and incentives than an insurer.
How will the drive to health care value affect health care’s structure? We tend to assume that the health care structure we’re become accustomed to is the one we’ll always have, but that’s probably far from the truth. If we pull levers that incentivize the right care at the right time, it’s likely that many of the problems we think we’re stuck with, like overtreatment and a lack of accountability, will disappear.
A large part of getting the right results is making sure that health care vendors have the right incentives. All forms of reimbursement carry incentives, so it’s important to align them, to choose payment structures that work for patients and purchasers as well as providers. Fee-for-service sends exactly the wrong message, because it encourages unnecessary utilization, paying for each component service independent of whether its necessary and independent of the outcomes. Compare US treatment patterns to those in other industrialized nations and you’ll find ours are generally bloated with procedures that have become part of practice not because they’re clinically necessary but simply because they’re billable.
By contrast, value-based arrangements are really about purchasers demanding that health care vendors deliver better health outcomes and/or lower cost than what they’ve experienced under fee-for-service reimbursement, and the payment structure often asks the vendor to put his money where his mouth is, at least where performance claims are concerned. In a market that’s still overwhelmingly dominated by fee-for-service arrangements, one way for a vendor to get noticed is to financially guarantee performance. Integrated Musculoskeletal Care, a musculoskeletal management firm based in Florida, guarantees a 25% reduction in musculoskeletal spend on the patients they touch. This typically translates to a 4%-5% reduction in total health plan spend, just by contracting with this vendor, a compelling offer in an environment that makes it hard for upstarts to get market traction.
Anil Sethi had the health tech exit every startup dreams about: a buyout by Apple. Not content to ride that unicorn into the sunset, Anil’s back at it with his new startup Ciitizen, which is another take on better a patient health record. What’s different? Why come back? Tune in for more and this and Anil’s great advice for other health entrepreneurs.
The growing movement to include the patient voice in medicine through
Motivational Interviewing, patient-reported outcomes, social determinants of health
and shared decision-making
One day in 2011, as a part of my research on ways to improve patient-provider communication about health behaviors, I was shadowing Dr. G., a talented young internist with a cheerleader demeanor. He marched through 12 afternoon patient appointments with confidence and purpose. But when he saw the name of the last patient on his schedule, he turned pale, faced me and said, “I apologize for what you are about to see.”
I must have looked confused. He repeated, “I
apologize for what you are about to see.”
We walked into the exam room. I’m not sure either
one of us knew what to expect. The patient, a white, obese man, was seated,
doubled over. He had a wad of paper towels jammed in his mouth. He threatened
to pull out his own, presumably abscessed, tooth. He refused to see a dentist
because he had no dental coverage, no money and no one to borrow money from. He
said he would use pliers to pull his tooth, but stayed put, rocking in his
seat. At the computer, the young doctor’s white-knuckled hand gripped his
mouse. Click. Click. Click. He searched the patient’s chart aimlessly for help.
Alerts kept popping up about the patient’s missing A1C results. It took two
minutes, but it felt like 20.
Dr. G. left the room and came back a few minutes
later. He gave the patient the name of a dentist who would see him at no cost.
I suspected Dr. G. had called the dentist and said he would pay for the
appointment out of his own pocket. The patient hugged Dr. G. He only wanted
help, and Dr. G. wanted to help. The tension was resolved for the moment.
The McKinsey “2,750 times” statistic is a pretty
good proxy for the amount of your personal health data that is NOT protected by
HIPAA and currently is broadly unprotected from sharing and use by third
However, there is bipartisan legislation in front of Congress that offers expanded privacy protection for your personal health data. Senators Klobuchar & Murkowski have introduced the “Protecting Personal Health Data Act” (S.1842). The Act would extend protection to much personal health data that is currently not already protected by HIPAA (the Health Insurance Portability and Accountability Act of 1996).
In this essay, we will look in the rear-view mirror to see
how HIPAA has provided substantial protections for personal clinical data — but
with boundaries. We’ll also take a look out the windshield — the Wild West of
unprotected health data.
Then in a separate post, we’ll describe and comment on the
pending “Protect Personal Health Data Act”.
Kurbo just became a wholly owned subsidiary of WW (aka WeightWatchers) with its app that helps kids lose weight. Co-founder Thea Runyan explains how the digital health solution is changing unhealthy lifestyles for teens and kids everywhere and talks about her company’s successful exit to the weight loss giant.
Filmed at HIMSS/Health 2.0 Europe in Helsinki, Finland in June 2019.
On Episode 3 of HardCore Health, Jess & I start off by discussing all of the health tech companies IPOing (Livongo, Phreesia, Health Catalyst) and talk about what that means for the industry as a whole. Zoya Khan discusses the newest series on THCB called, “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?”, which follows & discuss the legislation being passed on data privacy and protection in Congress today. We also have a great interview with Paul Johnson, CEO of Lemonaid Health, an up-and-coming telehealth platform that works as a one-stop-shop for a virtual doctor’s office, a virtual pharmacy, and lab testing for patients accessing their platform. In her WTF Health segment, Jess speaks to Jen Horonjeff, Founder & CEO of Savvy Cooperative, the first patient-owned public benefit co-op that provides an online marketplace for patient insights. And last but not least, Dr. Saurabh Jha directly address AI vendors in health care, stating that their predictive tools are useless and they will not replace doctors just yet- Matthew Holt
Matthew Holt is the founder and publisher of The Health Care Blog and still writes regularly for the site.