Knowledge is power. If this adage is true, then the currency of power in the modern world is data. If you look at the evolution of the consumer economy over the past 100 years, you will see a story of data infrastructure adoption, data generation, and then subsequent data monetization. This history is well told by Professors Minna Lami and Mika Pantzar in their paper on ‘The Data Economy’: “Current ‘data citizenship’ is a product of the Internet, social media, and digital devices and the data created in the digitalized life of consumers has become the prime source of economic value formation. The database is the factory of the future.” If we look no further than the so-called big tech companies and distill their business models down in a (likely overly) reductionist fashion: Apple and Microsoft provide infrastructure to get you online, and Facebook (Meta) and Google collect your data, while providing a service you like, and use that data to sell you stuff. Likely none of this is surprising to this audience, but what is surprising is that this playbook has taken so long to run its course in one of the world’s largest and most important sectors: healthcare.
Given the potential impact data access and enablement could have on transforming such a large piece of the economy, the magnitude of the opportunity here is — at face value — fascinating. That said, healthcare is a different beast from many other verticals. Serious questions arise as to whether target venture returns can be extracted in this burgeoning market with the scaled incumbents (both within and outside healthcare) circling the perimeter. Additionally, this is a fragmented ecosystem that has existed (in its infancy) for a few years now with well-funded players now solving for different use cases. Thus, another question emerges as to which areas are best suited for upstarts to capitalize. A key theme in our assessment of the space is that regulation is driving the move towards democratized data access in healthcare, but unlike in regulatory shake-ups of the past, this time start-ups will benefit more than scaled incumbents. Furthermore, we have identified some areas within each approach to this new ecosystem that particularly excite us for net new investment.Let’s dive in.
Why This Time is Different: Regulatory + Market Dynamics
The Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 brought about an explosion of digital healthcare data by expanding adoption of electronic medical records from ~12% to 96%.
I had a skin cancer diagnosed in November. It’s my third, and I researched the last one heavily, so I knew what I wanted (Mohs on the nose). But the hospital that did the diagnosis insisted I wait and have a consult visit in January, and *then* they’d let me schedule the procedure, probably in March.
I said I know what treatment I want – can’t I schedule the surgery now? They said, “That’s not how we do it.”
How long did it take me to get them the data? 15 minutes. I went back to the first place’s portal and downloaded my visit note and pathology report and emailed it all to BIDMC. An hour after I dialed the phone I had the appointment I wanted.
Patient power. I took my records – and my business – elsewhere.
This is of course a nightmare for providers who think they can lock us in. And it’s a dream come true for providers who have been longing to win us away by providing better service.
(I would have had the surgery before now, within January, but COVID struck so we postponed.)
Medical record access is empowering! Thank you to those who worked so long and hard to create these policies!
It’s also great news for providers who are trying hard to be #patientcentric: now we can easily reward them with our business!
It’ll be even better in the coming years because data #interoperability via FHIR will let apps and hospitals go GET the data … or, even better, let consumers already have their data in their own app, to do anything they want with it. True patient autonomy.
Dave deBronkart is a patient activist, speaker and author. This was originally published on his LinkedIn page
Micky Tripathi the National Coordinator for Health Information Technology at HHS says this year will be a “transformative” year for Health IT as the decade-long, $40 billion dollar effort to lay an electronic foundation for healthcare delivery heads to the next level. Why is this year THE YEAR when it comes to the digital exchange of health information? Where is federal health IT strategy headed in order to provide the standards and policies health tech co’s need to be able to kick up the pace of innovation?
We get into a SWEEPING chat about the technology and business implications of all the work coming out of ONC, including implementation of those new information blocking regulations, goals for API standardization, and TEFCA (Trusted Exchange Framework & Common Agreement). Micky not only gives the background on the regulations and policies, but also provides some analysis on what they actually mean for those health technology companies trying to do business in-and-around a more digital healthcare ecosystem.
Thank you, ONC for the opportunity you gave me to speak in June. Also, thank you for the format of your August meeting where the Zoom chat feature offered a wonderful venue for an inclusive commentary and discussion as the talks were happening. Beats lining up at the microphone any day.
Here is a brief recap of my suggestions, in no particular order:
How should we react to 1,718 pages of new regulation? Let’s start by stipulating the White House and HHS perspective:
“Taken together, these reforms will deliver on the promise to put patients at their center of their own health care — you are empowered with control over your own health care choices.”
Next, let’s stipulate the patient perspective via this video lovingly assembled by e-Patient Dave, Morgan Gleason, and the folks at the Society for Participatory Medicine. In less than 3 minutes, there are 15 patient stories, each with a slightly different take on success.
The rather esoteric issue of a national patient identifier has come to light as a difference between two major heath care bills making their way through the House and the Senate.
The bills are linked to outrage over surprise medical bills but they have major implications over how the underlying health care costs will be controlled through competitive insurance and regulatory price-setting schemes. This Brookings comment to the Senate HELP Committee bill summarizes some of the issues.
Those in favor of a national patient identifier are mostly hospitals and data brokers, along with their suppliers. More support is discussed here. The opposition is mostly on the basis of privacyand libertarian perspective. A more general opposition discussion of the Senate bill is here.
Although obscure, national patient identifier standards can help clarify the role of government in the debate over how to reduce the unusual health care costs and disparities in the U.S. system. What follows is a brief analysis of the complexities of patient identifiers and their role relative to health records and health policy.
TEFCA will succeed where previous national health information exchange efforts have failed only if it puts patients’ and families’, and/or their fiduciary agents, in control of health technology. This is the only path to restore trust in physicians, and to ensure accurate and complete data for treatment and research.
As physicians and patient advocates, we seek a longitudinal health record, patient-centered in the sense of being independent of any particular institution. An independent health record is also essential to enhancing competition and innovation for health services. TEFCA Draft 2 is the latest in a decade of starts down the path to an independent longitudinal health record, but it still fails to deal with the problems of consent, patient matching, and regulatory capture essential for a national-scale network. Our comments on regulatory capture will be filed separately.
We strongly support the importance in Draft 2 of Open APIs, Push, and a relationship locator service. We also strongly support expanding the scope to a wider range of data sources, beyond just HIPAA covered entities in order to better serve the real-world needs of patients and families.
However, Draft 2 still includes design practices such as the lack of patient transparency, lack of informed consent, and a core design based on involuntary surveillance. This institution-centered design barely works at a community level and leaves out many key real-world participants. It is wishful thinking to believe that it will work with expanded participant scope and on a national scale.
The original sin of health records interoperability was the loss of consent in HIPAA. In 2000, when HIPAA (Health Insurance Portability and Accountability Act) first became law, the Internet was hardly a thing in healthcare. The Nationwide Health Information Network (NHIN) was not a thing until 2004. 2009 brought us the HITECH Act and Meaningful Use and 2016 brought the 21st Century Cures Act with “information blocking” as clear evidence of bipartisan frustration. Cures, in 2018, begat TEFCA, the draft Trusted Exchange Framework and Common Agreement. The next update to the draft TEFCA is expected before 2019 which is also the year that Meaningful Use Stage 3 goes into effect.
Over nearly two decades of intense computing growth, the one thing that has remained constant in healthcare interoperability is a strategy built on keeping patient consent out of the solution space. The 2018 TEFCA draft is still designed around HIPAA and ongoing legislative activity in Washington seeks further erosion of patient consent through the elimination of the 42CFR Part 2 protections that currently apply to sensitive health data like behavioral health.
The futility of patient matching without consent parallels the futility of large-scale interoperability without consent. The lack of progress in patient matching was most recently chronicled by Pew through a survey and a Pew-funded RAND report. The Pew survey was extensive and the references cite the significant prior efforts including a 100-expert review by ONC in 2014 and the $1 million CHIME challenge in 2017 that was suspended – clear evidence of futility.
In this edition of Health in 2 point 00, Jessica DaMassa asks me about enterprise sales (Qventus, Medicity, Health Catalyst), DTC vs Enterprises as a market, the VA allowing nationwide telehealth,, and the TEAP & TEFCA frameworks (that last answer may have overran the 2 minutes a tad!) — Matthew Holt