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The Beautiful Disruption: How Open Health Care Data Puts Patients in Charge

Health care is on the verge of a beautiful disruption.

The Beautiful Disruption : How Health Care Innovation Put The Patient in Charge
Technology is driving a liberation of data that will fundamentally change our relationship with our patients. In this brief blog, we will:

  • look at technology’s effects on grocery stores (and why we should care),
  • highlight some innovative companies that are disrupting health care, and
  • put it all together to recognize how patients will command more control over health care decisions and spending.

But first—grocery stores.

Grocery Store Technology

Once upon a time, grocery store employees spent an evening each month counting the cereal boxes left upon the shelf.  Store managers used this inventory data to improve business.

  • Was Frosted Flakes or Cheerios selling better?
  • Which part of the aisle moved the most inventory?
  • Which brand sold better in July? How about December?

Then technology changed things.

Modern day grocery store inventory management is a real-time science. There is no need for hand counts to understand what is selling. Each box of cereal is scanned at the register as it leaves the store.

Each store knows exactly which product it is selling at any time and can predict what will sell during tomorrow’s forecasted hot weekend weather. They estimate the best price, other purchases that will be made, and the kind of person who will shop.

But it is deeper than that. Grocery stores armed with data now use real-time information to change the way they sell to you.

Your grocery store deduces that the woman who lives down the street from you is pregnant before her family even knows it. Last week she purchased a pregnancy test and started buying multivitamins. She now receives advertisements targeted to gravid customers.

But how does this relate to healthcare?

As physicians, we intuitively understand that we’re getting more information in real-time, like the grocery store, and that we use this data to alter patient care.

We enter patient claims data at the bedside. We adjust resources to meet daily demands. We better estimate the numbers of procedures we will perform tomorrow. This creates efficiencies of care.

In some circumstances, we predict who will be ill tomorrow. For example, the modern approach to congestive heart failure might include a dashboard alarm triggered by a patient’s daily weight increase. The alarm mobilizes an army of caregivers and algorithms tasked to adjust the patient’s diet and medication to prevent worsening disease and hospitalization.

So where is the disruption?

Scanning cereal boxes and real-time patient claims data entry have transformed each of these respective industries. They have reduced costs, prompted evolutionary improvements of process efficiency, and created a more vivid contextual framework for decision-making. But these are incremental sustaining innovations.

There are deeper and more impactful innovations to our current model that will disrupt the health care market. In their wake will be a new health care market operating from a different set of values and points of control. Let’s look at specific examples where technology drives health care data liberation, ask some questions, and then recognize the resulting disruption.

Transparency of Health Care Charges, Costs, and Outcomes

Department of Health and Human Services

On May 8, 2013, President Obama signed an Executive Order requiring that “all newly generated government data be made available in open, machine readable formats while ensuring privacy and security.” That same week the Department of Health and Human Services released Medicare billing data that reveals hospital charge and reimbursement for 100 common procedures. These charges used to be proprietary.

Within two weeks, OpsCost.com created a free, easily searchable database that allows anyone to enter a location (for example, Fresno, CA) and compare what hospitals charge for common procedures.

More protected or hard-to-get information will be released. We can expect that physician charge data, outcomes data, and satisfaction data will soon be opened for release as the Department of Health and Human Services runs through its long wish-list of data requests and modernizes its computers and databases.

Health Care Data Hackers

Health care hackers see data liberation as a way to expose the incentives, the benefits, and the weaknesses of our health care system.

Fred Trotter, a health care hacker, argues for hacking as a moral imperative:

“We have too many medical errors. We have overtreatment, undertreatment, fraud and disconnected care. Worse, until very recently, we had incentives that were virtually guaranteed to make these problems worse. These problems are merely symptoms of the wrong set of morals being encoded into the healthcare system.”

A growing community of health technology geeks align with the goal of finding clever ways to put health data and strategy into the hands of patients. There are Health Datapalooza’s and health care application hack-a-thons. Venture capital funds flow into this sector as technology incubators nurture the next Google-Facebook-Twitter for health care efficiency and cost-effectiveness.

Castlight Health

Castlight Health works with self-insured employers to provide transparency of cost and outcome data for the care of their employees. Castlight Health takes the data that physicians submit to bill for services to populate a database of costs, procedures, and bed days.

Employers, who increasingly fight against the leakage of profit margin to healthcare, use Castlight Health dashboards to compare physician and hospital charges, and outcomes for procedures such as a colonoscopy or knee-replacement. Their employees, armed with data and spurred by a higher insurance deductible, make more informed decisions.

The evolving transparency of charge and cost data prompts questions:

  • How do we prove the benefit of care and defend health care price structures?
  • How do physician referral patterns change as a result of transparent cost and outcome data?
  • How does the release of cost and charge data affect health care negotiations between payors, hospitals, and physicians?

Portability of Medical Records: The Patient’s Electronic Health Record

As physicians, we often think of the stuff that we write in medical records as being “our notes.” However, patients think of the medical record as being a part of “their notes”…and both the government and the market agree. But it’s been a struggle for the patient who wants to access their note.

Blue Button Plus is an initiative launched by the Department of Veterans Affairs and now supported by over 60 electronic health care vendors that gives patients access to their electronic health data with a click of a button. It gives a patient the opportunity to share “their data” with any institution or hand-held app that they desire.

Blue Button will transmit a patient’s medical record from the physician’s Workstations On Wheels to the patient’s mobile phone in an instant. It populates the patient’s electronic health record.

Single click sharing of a patient’s health record prompts questions:

  • How will physician documentation of medical-decisions change when the patient can access it with the click of a button?
  • Will there be community rating of a physician’s documentation of medical-decision making?
  • What new cloud-based applications and communities will develop that will allow patients to analyze, manipulate, and share their medical record in real-time?

Availability of Personal Health Indicators: Quantified Self

Look around and you will see people wearing personal data devices made by companies such as Fitbit, Bodymedia, and Jawbone. This modern jewelry tracks vital signs (such as heart rate, body temperature, blood pressure and respiratory rate) and monitors sleep, calories burned, distance covered, and weight.

A whole world of application developers, dashboards and coaches turn this physiologic data into personalized real-time fitness and wellness strategies.

The increasing use of personal data devices prompts questions:

  • How will personal health data become part of the electronic health record?
  • How will physicians monitor and use this data?

Availability of the Personal Diagnostic Laboratory

It used to be that a physician order was required whenever a patient wanted a diagnostic laboratory test. Now it’s routine for some tests (such as pregnancy, blood in stool, and HIV tests) to be purchased at Walmart.

A few innovative companies are extending this model. They’ve taken the tests out of the doctor’s office and made them available directly to consumers:

Sign up for Wellness FX, pay $150, and you’ll get a complete blood count, metabolic panel, cholesterol panel, vitamin D, CRP and TSH without ever seeing a physician. For an additional fee, you can add a bunch of hormone and advanced nutrient tests.

Many WellnessFx’ers purchase monthly redraws to provide feedback on the effects of what they eat and how they work out.

23 and Me uses a $99 at-home saliva test to decode an individual’s DNA genotype. Members spit into a test tube and 6 weeks later their DNA has been sequenced. They can use this information to estimate how their genes may affect their health, who their genetic relatives and ancestors are, and whether they carry the genes for inherited conditions such as cystic fibrosis, sickle cell, and Tay-Sachs disease.

uBiome gives an individual the opportunity to understand the bacterial garden that grows within them. For $89 and a sample of stool, saliva and/or skin uBiome will tell a person which specific kinds and percentages of bacteria reside within their body.

uBiome is a part of The Human Microbiome Project that is looking at how changes in bacterial flora influence human physiology. Some people sign up for monthly stool tests and then monitor how their diet and medications affect their personal microbiome and health.

The development of the personal diagnostic laboratory prompts questions:

  • How do health care providers partner with patients to help them make informed decisions on the developing science of idiosyncratic data?
  • How sound is the science used by our patients in making decisions?

Availability of Crowd-Sourced Medical Decision-Making: ePatient Communities

Patient-centered online communities are now commonplace. There are both general medical communities and there are communities focused on specific health problems, such as obesity or diabetes.

For example, SmartPatients.com, started by the former Chief Health Strategist at Google, is an online community for cancer patients . This community is built alongside a clinical trials and treatment search engine. Cancer patients can leverage an online community of information, experts, and fellow patients to better partner with their oncologist to make more informed care decisions.

In the future, patients in online communities will share their electronic health record (EHR) with caregivers, fellow patients, and physicians. These ePatient EHRs will be populated with medical-decision making findings from the physician, lab reports from WellnessFx, charge data from Medicare, and personal vital signs from personal data devices. They will exist alongside, but entirely separate from health care institutional data.

The formation and utility of crowd-sourced medical decisions prompts questions:

  • Will there be an online market for second opinions and how will that function?
  • How does a physician earn an excellent rating by an ePatient community and why would that matter?
  • How will a patient bring data from their community to their physician?

Grocery Store Revisit

We initially looked at the way a technology, such as a grocery store scanner, has changed an industry. We can look to health care and see how technological advances in minimally-invasive surgical equipment or ultrasonography have made a tremendous incremental impact on health care. To reiterate, this technology has provided an incremental improvement in care; however, it has not been disruptive.

I keep thinking back to the grocery store example as a metaphor for health care. And as I started writing this essay, I thought of the physician as the grocery store clerk. The procedures that are performed and the patients examined are the cereal boxes being scanned.

However, this is incorrect.

The liberation of health care data flips the roles. The grocery clerk in this metaphor is the patient, and the physicians, hospitals, and procedures are the cereal box. Each patient will now have their own real-time, contextual data at their fingertips: cost/charge data, outcomes, electronic health records, quantified self-data, lab records, communities of physician and non-physician experts.

And therein lies the disruption. A health care market that operates from the values and control of patients.

The Beautiful Disruption

Obviously, a mobile phone cannot replace a physician. There is no combination of data, technology and algorithm that will match a physician’s skills and expertise.

However, as we look ahead, there will be different cost and payment structures and this will affect the capital structure and the layout of our health care system. There will be amazing innovation. Organizations that try to preserve the old model will topple, some organizations will burn the old ways and adapt the new, and more will rise up to create a new vision. And this will be better for patients.

We are challenged to embrace new technology and the data it brings. We need to be at the forefront of helping our patients adopt and assimilate its advances. The disruption will result in a stronger partnership between physician and patient, no matter who takes the part of the grocery store clerk.

And that is beautiful.

Question: How do you see the health care market changing? Click here to share your comments.

Copyright © 2022 · Richard Winters MD

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