WTF Health – ‘What’s the Future’ Health? is a new interview series about the future of the health industry and how we love to hate WTF is wrong with it right now. Can’t get enough? Check out more interviews at www.wtf.health.
How can patients help usher in a better future for healthcare? Start speaking up. LOUDLY.
In this WTF Health interview, meet one of health’s most outspoken patient advocates, Twitter voices (@mightycasey) and podcasters, Casey Quinlan of Mighty Casey Media, who talks about her patient journey as a cancer survivor — and why the awful experience led her to tattoo a QR code linking to her electronic medical record to her chest.
Casey’s ‘physical political protest’ is tied to her passionate views about the lack of data liquidity in healthcare and how patients suffer as a result. She’s launching a new “If-You’re-Selling-My-Health-Data-Cut-Me-In” Movement and weighs in on why more patients aren’t clamoring after their health data to push real change in the healthcare system.
Filmed at Health Datapalooza in Washington DC, April 2018.
Executive Summary of PPR Comments on Information Blocking
Information blocking is a multi-faceted problem that has proved resistant to over a decade of regulatory and market-based intervention. As Dr. Rucker said on June 19, “Health care providers and technology developers may have powerful economic incentives not to share electronic health information and to slow progress towards greater data liquidity.” Because it involves technology standards controlled by industry incumbents, solving this problem cannot be done by regulation alone. It will require the coordinated application of the “power of the purse” held by CMS, VA, and NIH.
PPR believes that the 21st Century Cures Act and HIPAA provide sufficient authority to solve interoperability on a meaningful scale as long as we avoid framing the problem in ways that have already been shown to fail such as “patient matching” and “trust federations”. These wicked problems are an institutional framing of the interoperability issue. The new, patient-centered framing is now being championed by CMS Administrator Verma and ONC Coordinator Rucker is a welcome path forward and a foundation to build upon.
To help understand the detailed comments below, consider the Application Programming Interface (API) policy and technology options according to two dimensions:
API Content and Security
Institution is Accountable
Patient is Accountable
API Security and Privacy
Broad, prior consent
Known to the practice
API Content / Data Model
Designated record set
Bulk (multi-patient) data
Designated record set
Wearables and monitors
This table highlights the features and benefits of interoperability based on institutional or individual accountability. This is not an either-or choice. The main point of our comments is that a patient-centered vision by HHS must put patient accountability on an equal footing with institutional accountability and ensure that Open APIs are accessible to patient-directed interoperability “without special effort” first, even as we continue to struggle with wicked problems of national-scale patient matching and national-scale trust federations.
Here are our detailed comments inline with the CMS questions in bold:Continue reading…
As promised I’m going to be featuring more interesting companies I’m working with on THCB. Supportiv, which is launching today in beta (App store/Play) is a thoroughly modern answer to the problem of scaling peer support in mental health. It’s aimed in the space between the mediation apps like Headspace & Calm, and the online therapy services like AbleTo or Lantern. The target market is anyone feeling stress or wanting support in a quick and easy format–that’s basically everyone! Using the magic of NLP, those looking for support are steered into a chatroom where a trained moderator (usually a Masters student in psychology) making sure the experience is smooth. In its trials earlier this year of the 48,000 users, 96% reported improvement. The business model? It costs 15 cents a minute, or $4.50 for 30 mins (which is roughly the expected length of a session). There’s lots of science behind the idea that peer support works but to hear more Jessica DaMasssa interviewed the co-founders Pouria Mojabi & Helena Plater-Zyberk.
Intrigued by many things in my first few days in the U.S., what perplexed me the most was that there seemed to be a DaVita Dialysis wherever I went; in malls, in the mainstreet of West Philadelphia, near high rises and near lower rises. I felt that I was being ominously followed by nephrologists. How on earth could providers of renal replacement therapy have a similar spatial distribution as McDonalds?
After reading Friedrich Hayek’s essay, Use of Knowledge in Society, I realized why. In stead of building a multiplex for dialysis, which has shops selling pulmonary edema-inducing fried chicken, DaVita set shop where people lived or hung out. It wasn’t a terribly clever business plan but its genius was its simplicity, its humility. If the mountain will not come to Muhammed, Muhammed must go to the mountain. DaVita went to the masses.
The link between Hayek’s wisdom and DaVita’s business plan may seem tenuous. But Hayek has been misunderstood, particularly in healthcare. Many a times and oft in the policy world Hayek has been rated about money and usances. This is because of a misperception that Hayek was all about profit and loss, which are anathema to healthcare. Hayek’s message was simple: local knowledge can’t be aggregated. From this premise sprouts others – dispersed agents in certain times and places possess fragments of knowledge which don’t come easily to central planners.
For Hayek, socialism and capitalism weren’t moral but epistemic issues. Socialism would fail because of a coordination problem – markets would succeed because they could use price signals to coordinate. Healthcare doesn’t use price signals to coordinate, not explicitly, at least. Nor does it capitalize on dispersed agents – on local knowledge. Hayek, a supporter of universal healthcare, didn’t specifically discuss healthcare in his essays. Nonetheless, it would be a useful intellectual exercise to speculate how Hayek might have applied his wisdom to modern healthcare.
What does local knowledge in healthcare even mean? Stated in a rather unlettered way, it is the provision of healthcare locally. AEDs are no good if they aren’t located where people congregate. The value of local presence of medical facilities, particularly in poor neighborhoods, is hardly rocket science. Just as great cities grew near rivers, great hospitals germinated in poor neighborhoods. But, with growing centralization of healthcare, with hospitals becoming multiplexes, futuristic cities with a distinct architectural phenotype, different from the neighborhoods they serve, the value of decentralization can be missed.
The good that doctors do is oft interred by a single error. The case of Dr. Hadiza Bawa-Garba, a trainee pediatrician in the NHS, convicted for homicide for the death of a child from sepsis, and hounded by the General Medical Council, is every junior doctor’s primal fear.
An atypical Friday
Though far from usual, Friday February 18th, 2011 was not a typically unusual day in a British hospital. Dr. Bawa-Garba had just returned from a thirteen-month maternity break. She was the on-call pediatric registrar – the second in command for the care of sick children at Leicester Royal Infirmary. As a “registrar” she was both a master and an apprentice – a juxtaposition of roles necessary for the survival of acute care in the NHS. Because there aren’t enough commanders, or consultants (attendings), in the NHS trainees must fill their shoes or else the NHS will collapse.
The captain of the ship and Dr. Bawa-Garba’s supervisor, Dr. O’ Riordan, was not in the hospital but teaching in a nearby city. As horrendous as “attending not being in the hospital” sounds this, too, is not atypical in the NHS. Dr. Bawa-Garba’s colleagues, i.e. other registrars, were also away, on educational leave. Normally, a registrar each is assigned to cover the wards, the emergency department and the Children’s Assessment Unit (CAU). On that day, Dr. Bawa-Garba covered all three. She was new to the hospital, but with no formal induction – i.e. no explanation where things are and how stuff gets done in the hospital – she was expected to get along with the call and find her way around the hospital.
As anyone who has been a junior doctor in NHS can attest – the normal, the optimal, is unusual, and what is usual in British hospitals is remitting and relapsing chronic understaffing. The abnormal eventually becomes normal. You work through the anarchy. The anarchy is both the old normal and the new normal.
Let’s give the Office of the National Coordinator (ONC) credit for trying. In what’s arguably the first significant piece of policymaking, the newly Republican HHS issued a draft Trusted Exchange Framework and Common Agreement (TEFCA) that aims to implement the massively bipartisan 21st Century Cures act mandate to end information blocking. Are they succeeding?
Why should you care? After almost a decade and many tens of $billions spent on health information technology, neither physicians nor patients have access to a longitudinal health record, transparency of quality or cost, access to independent decision support, or even the ability to know what their out-of-pocket cost is going to be. After eight years of regulation, precious little benefit has trickled-down to patients and physicians. This post looks at the TEFCA proposal from the patient experience perspective.
The patient perspective matters because, under HIPAA, patients do not have choice about how our data is accessed or used. This has led to information blocking as hospitals and EHR vendors slow-walk the ability of patients to direct data to information services we choose. Patients lost the “right of consent” in 2002. This puts a regulation-shy administration in a quandary: How do they regulate to implement Cures, when current HIPAA and HITECH-era regulations give all of the power to provider institutions bent on locking-in patients as key to value-based compensation?
Health 2.0 sat down with Linda Molnar to discuss the evolution of Precision Health, the imperatives at stake in a fast-paced field, and empowerment through big data. Linda has over 20 years in the field of Life Sciences and is responsible for a number of initiatives that further the field with start-ups, the feds, and for investors.
Her current endeavor is leading the upcoming Technology for Precision Health Summit in San Francisco alongside Health 2.0. “We’re never going to pull together all of this disparate data from disparate sources in a meaningful (i.e. clinically actionable) way, unless we talk about it” she says. “The Summit is an attempt to bring together the worlds of Precision Medicine and Digital Healthcare to realize the full potential of a predictive and proactive approach to maintaining health”.
On Wednesday, October 25, 2017 I was at the inaugural Society for Participatory Medicine conference. It was a fantastic day and the ending keynote was the superb Shannon Brownlee. It was great to catch up with her and I’m grateful that she agreed to let THCB publish her speech. Settle back with a cup of coffee (or as it’s Thanksgiving, perhaps something stronger), and enjoy–Matthew Holt
George Burns once said, the secret to a good sermon is to have a good beginning and a good ending—and to have the two as close together as possible. I think the same is true of final keynotes after a fantastic conference. So I will do my best to begin and end well, and keep the middle to a minimum.
I have two main goals today. First, I want to praise the work you are doing, and set it into a wider context of the radical transformation of health care that has to happen if we want to achieve a system that is accountable to patients and communities, affordable, effective — and universal: everybody in, nobody out.
My second goal is to recruit you. I’m the co-founder of the Right Care Alliance, which is a grassroots movement of patients, doctors, nurses, community organizers dedicated to bringing about a better health system. We have 11 councils and chapters formed or forming in half a dozen cities. I would like nothing more than at the end of this talk, for every one of you to go to www.rightcarealliance.org and sign up.
But first, I want to tell you a bit about why I’m here and what radicalized me. My father, Mick Brownlee, died three years ago this Thanksgiving, and through his various ailments over the course of the previous 30 years, I’ve seen the best of medicine, and the worst.
My father was a sculptor and a scholar, but he was also a stoic, so when he began suffering debilitating headaches in his early 50s, he ignored them, until my stepmother saw him stagger and fall against a wall in the kitchen, clutching his head. She took him to the local emergency room, at a small community hospital in eastern Oregon. This was the 1970s, and the hospital had just bought a new fangled machine—a CT scanner, which showed a mass just behind his left ear. It would turn out to be a very slow growing cancer, a meningioma, that was successfully removed, thanks to the wonders of CT and brain surgery. What a miracle!
Fast forward 15 years, and Mick was prescribed a statin drug for his slightly elevated cholesterol. One day, he was fine. The next he wasn’t, not because his cholesterol had changed, but the cutoff point for statin recommendations had been lowered. Not long after Mick began taking the statin, he began feeling tired and suffering mild chest pain, which was written of as angina. What we didn’t know at the time was the statin was causing his body to destroy his muscles, a side effect called rhabdomyolysis. Even his doctor didn’t recognize his symptoms, because back then, the drug companies hid how often patients suffered this side effect.
The statin caught up with Mick at an exhibit in Seattle of Chinese bronzes, ancient bells and other sculptures that my father had been studying in art books his whole career. Halfway through the exhibit, he told my brother to take him home; he was too tired to take another step.
Three days later, he was in the hospital on dialysis. The rhabdomyolysis had finally begun to destroy his kidneys. Three weeks later, he was sent home alive with one kidney barely functional. Soon his health would begin to deteriorate at a steady pace.Continue reading…
Most people have no way of accessing DNA-powered insights about themselves, and no way to store and use their genome in ways that they control. Technology for Precision Health Summit demoer Helix solves that by providing the world’s first online store for DNA-powered products where people can explore diverse and uniquely personalized products developed by high-quality partners. After being sequenced once with true next-generation sequencing, the user can query their data on-demand at any time for a large variety of uses.
The costs of DNA sequencing have dropped rapidly, and our understanding of how DNA influences our lives has increased. For partners in the Helix marketplace, DNA now becomes a software problem, not a hardware problem, where a full clinical-grade exome is accessible through an API. Helix handles sample collection, DNA sequencing, and secure data storage so that our partners can integrate DNA insights into products across a range of categories, including ancestry, entertainment, family, fitness, health and nutrition.
The Annual Health 2.0 Fall Conference has harnessed the creativity and passion of health care’s brightest professionals to tackle the industry’s most intractable problems and leverage technology-enabled solutions to drive more compassionate, more accessible patient-centered care.
Check out the full agenda of our eleventh show, Oct. 1-4, in the heart of Silicon Valley.
Our killer line up of speakers covers the full spectrum of healthcare, and includes:
Innovative leaders, including Jason Pyle, CEO of Base Health; Simon Kos, CMO of Microsoft; Aashima Gupta, Global Head, Healthcare Solutions, Google; Brian Otis, CTO of Verily Life Sciences; Daniel Kraft, Founder and Chair of Exponential Medicine; and Jeff Margolis, CEO of Welltok.
Policymakers, such as HHS CTO Bruce Greenstein; ONC National Coordinator Don Rucker; former ONC Director David Brailer; and former U.S. CTO Aneesh Chopra.
Patient advocates, including Dave DeBronkart (e-Patient Dave) and Patient Power President Andrew Schorr.
Representatives from more than two dozen major health systems, including UPMC, Mount Sinai, Dignity Health, UCSF, and more!
Major healthcare investors, including Providence Ventures, Merck Ventures, GE Ventures, and more!