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With access to my records, I took my business elsewhere

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By EPATIENT DAVE DEBRONKART

Not our usual headshot but it is Dave!

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.”

So I went home and called around. Beth Israel Deaconess Medical Center said if I could get them the information they would book me for January, right then and there.

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

THCB Gang Episode 114, Thursday February 2 1pm PT 4pm ET

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Joining Matthew Holt (@boltyboy) on #THCBGang on Thursday February 2 at 1PM PT 4PM ET are futurist Ian Morrison (@seccurve); fierce patient activist Casey Quinlan (@MightyCasey); writer Kim Bellard (@kimbbellard); and Olympic rower for 2 countries and all around dynamo Jennifer Goldsack, (@GoldsackJen).

You can see the video below & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

13 Year Old McAllen

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BY IAN MORRISON

As a Scot, obviously I am a whisky fan, and although I prefer the smoky malts of Islay (where my grandfather was from and where I visit my friends there frequently), I am also a huge fan of McCallan 18-year-old whisky, the sticky toffee pudding of single malts.

But as all policy wonks know, McAllen Texas is not famous for whisky but for Atul Gawande’s “Cost Conundrum” article in the New Yorker, in 2009 which is still required reading in medical school and MPH classes and was arguably the cornerstone of Obama health policy and the ACO movement.

Dr. Atul Gawande described overutilization and high cost of Medicare revealed by Dartmouth Atlas nationally and zeroed in on McAllen Texas.  Compared to El Paso (a seemingly like comparison) McAllen was the most expensive place in America for healthcare based on Medicare claims data.  Gawande highlighted the entrepreneurial, doctor-owned, Doctor Hospital at Renaissance DHR in Edinburg, TX as having fancy, modern technology while the community as a whole seemed underserved.  

I have always had unease with just using Medicare data to judge costs, because there was no recognition of what I was observing on my travels, namely an enormous variation in commercial prices (not simply utilization) in hospital costs in terms of paid claims by self insured employers.  Poignantly, sources at the time claimed McAllen, Texas had among the lowest commercial insurance premium places in the country.  Interesting.

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Practicing Medicine without a License: When Patients and Politicians Play Doctor

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BY MICHAEL KIRSCH

We’ve all heard the adage, leave it to the professionals.  It’s typically used when an individual has wandered out of his lane.  How many folks go beyond their knowledge and skills with home projects, for example, who must then hire a real professional to mop up the mistakes?  Luckily for me, the only tools that I – a gastroenterologist – know how to use are a colonoscope and an endoscope, so there’s no chance that I will be tempted to perform any plumbing or electrical tasks at home.  

Although patients are not medical professionals, they routinely bring me results of their own medical research which suggest possible diagnoses and treatments.  Often, these are patients whom I am meeting for the first time.  I applaud patients who strive to be informed participants in their care. Indeed, there have been instances when a patient has brought me a valuable suggestion that I had not considered.  But these are uncommon occurrences.  A few computer clicks by a patient is not equivalent to the judgment and experience of a seasoned medical professional.  It’s unlikely, for example, that I will agree that a patient’s elevated temperature is caused by malaria, despite this appearing on a patient’s internet search on the causes of fever.  

However, even when I feel that a patient’s research results have no medical merit, the ensuing conversation is always valuable for both of us.  I am in the room and can address the issue directly in real-time.  I am the patient’s guardrail to protect him from careening off the road.  I can explain right then the importance of being guided whenever possible by sound medical evidence.  So, while I truly welcome the dialogue and recommendations from patients, I think that the maxim leave it to the professionals applies. Isn’t this why patients come to see us?

There’s a new player on the scene masquerading as medical professionals dispensing medical advice to the public.  And in this case, there are no effective protective guardrails protecting patients as we doctors routinely do.  I am not referring to middle of the night telemarketers or companies promising that probiotics are the panacea of our time.

As absurd as this sounds, politicians are now authorizing medical treatment for various diseases and conditions. Politicians? Could this be true? 

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Expanding Real World Datasets

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How are you working to advance research and improve patient outcomes? Are you precisely matching records across disparate datasets? Find out at a Webinar TODAY Feb 1st 1pm ET Sponsored by LexisNexis Risk Solutions Health Care

Healthcare’s fragmented data silos and strict but necessary privacy restrictions make it difficult to link real-world datasets. Legacy tokenization technology has helped link records across disparate data sources, but it lacks the accuracy required to uncover actionable insights that can truly improve patient outcomes. Next-generation tokenization technology leveraging a Referential Data Layer is needed to match de-identified records with precision. Hear from Solis Mammography’s CMO on how they are leveraging referential tokenization technology to link their longitudinal imaging data with complementary clinical and genomics data, enabling in-depth breast cancer research to champion women’s long-term health and wellness.

If you care about healthcare improvement, and want to continue to make an impact, join us to learn more about:
• What is referential tokenization and why it matters in healthcare
• Challenges and limitations of legacy tokenization technology
• The power of linking real-world data sets through a network of curated partners
• How Solis Mammography is leveraging referential tokenization to advance women’s health
• Actionable use cases demonstrating referential tokenization further empowering your organization to improve patient outcomes.

Join Us | February 1 @ 1pm ET/10am PT | Register Today

Speakers are: Camille Cook, MPH, Sr. Director, Healthcare Strategy, RWD @LexisNexis® Risk Solutions

Camille has 15 years of experience in healthcare with a focus on leveraging big-data to improve clinical care outcomes. Throughout her career, Camille successfully implemented innovative practices for healthcare IT, healthcare organizations, and life sciences companies utilizing health informatics, big-data, epidemiology, and human behavior patterns to create actionable insights that guide healthcare policy and meaningful use practices. Camille has spent the last 7 years evaluating syndromic infectious disease trends, healthcare operations, health economic outcomes research, and social determinants of health.

Matt Veatch, Real World Data Consultant, Founder and Managing Director @Revesight Consulting

Leveraging over 25 years of experience in biopharmaceutical product and medical device development, Matt advises life science companies on global RWD access and RWE strategic planning, execution, and M&A investments. Prior to establishing Revesight Consulting in 2017, Matt served in various corporate leadership positions, most recently as Vice-president of Strategic Operations at Syneos Health, leading initiatives in RWD access and decentralized study management. Prior to Syneos, Matt rose through various levels to become the Global Head of RWD-Driven Research for Quintiles, founding and leading the landscape-changing strategic collaboration with IMS Health in 2015, directly seeding the $19 billion merger of the firms in 2016 to form IQVIA. Additionally, Matt is a Founding Board Member of the Decentralized Trials & Research Alliance.

Chirag Parghi, MD, MBA, Chief Medical Officer @Solis Mammography

Dr. Chirag Parghi is a board-certified radiologist with fellowship (subspecialty) training in breast imaging and the Chief Medical Officer of Solis Mammography where he oversees clinical quality across more than 100 breast centers. As CMO, he also leads the clinical research endeavors where he is the principal investigator on several trials and manages relationships with the various radiologist practices.  Dr Parghi is still a practicing radiologist with an academic appointment at Albert Einstein medical center in Philadelphia.  Dr. Parghi’s clinical interests are rooted in the use of emerging technologies (including AI) to facilitate the early diagnosis, individualized risk modeling, and treatment of breast cancer.

MedEd in an AI Era

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BY KIM BELLARD

I’ve been thinking a lot about medical education lately, for two unrelated reasons.  The first is the kerfuffle between US News and World Report and some of the nation’s top – or, at least, best known – medical schools over the USN&WR medical school rankings.  The second is an announcement by the University of Texas at Austin that it is planning to offer an online Masters program in Artificial Intelligence.

As the old mathematician joke goes, the connection is obvious, right?  OK, it may need a little explaining.

USN&WR has made an industry out of its rankings, including for colleges, hospitals, business schools, and, of course, medical schools. The rankings have never been without controversy, as the organizations being ranked don’t always agree with the methodology, and some worry that their competitors may fudge the data.   Last year it was law schools protesting; this year it is medical schools.

Harvard Medical School started the most recent push against the medical school rankings, based on:

…the principled belief that rankings cannot meaningfully reflect the high aspirations for educational excellence, graduate preparedness, and compassionate and equitable patient care that we strive to foster in our medical education programs…Ultimately, the suitability of any particular medical school for any given student is too complex, nuanced, and individualized to be served by a rigid ranked list, no matter the methodology.

Several other leading medical schools have now also announced their withdrawals, including Columbia, Mt. Sinai, Stanford, and the University of Pennsylvania.  

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Matthew’s health care tidbits: How do you tell the price of a drug?

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Each time I send out the THCB Reader, our newsletter that summarizes the best of THCB (Sign up here!) I include a brief tidbits section. Then I had the brainwave to add them to the blog. They’re short and usually not too sweet! –Matthew Holt

As the average THCB reader is probably all too well aware I live in Marin County, California and therefore my kids are on amphetamine-based medication for ADHD. This is annoying as all get out because, as a controlled substance, this medication needs to be re-prescribed every month (no automatic refills allowed). In addition no 90 day supplies are allowed, and the kids must have checkups with their prescribing physician every 3 months (which are not cheap).

It’s not just prescribing which is complicated. Supply is an issue too and frequently pharmacies run out. This is furtherly frustrating because if one pharmacy is out it can’t move the Rx to another, even in the same chain like Walgreens or CVS. The new pharmacy requires a whole new prescription. I discovered last year that Alto Pharmacy, a VC backed home delivery pharmacy, will deliver controlled medications. This has saved me 12-24 visits to CVS in the past year.

But with a new year there are new problems. The “allowed” price, i.e. the price my insurer Blue Cross of Massachusetts had agreed with Alto Pharmacy (and other pharmacies) for the specific generic for one of my kids somehow went from $29 a month to $107. That’s the amount I actually pay until we hit our $4,500 family deductible. Incidentally because it’s a medication we still pay $10 a month after we hit the deductible.

Alto kept telling me that the cash price was around $50. But of course if we pay the lower cash price (either there or elsewhere using GoodRx) that doesn’t count against the deductible. So if we hit the deductible we are out the $50 (which works out to roughly $1200 per year for 2 kids). I kept asking Alto what had changed that made the cost go up? They kept not telling me an answer, other than it cost $107. I asked the good people at Health Tech Nerds slack group if they could guess what was going on. Their consensus was that the formulary tier had been changed. “But it’s a generic”, (I foolishly thought).

Finally I called the pharmacy number on BCBS Massachusetts website, and ended up talking to someone at CVS Caremark– their PBM. In the course of the 30 minute call they ran a dummy claim with several other pharmacies. All came back at the $107 number. They then looked up the formulary to see if it had changed. Meanwhile I looked at the formulary on the BCBS Mass website while this was going on. The medication was still tier 1. So why has the cost to me and perhaps to the Blues plan gone up from $29 a month to $107? (Yes that’s more than a factor of 3!)

While she was talking to me the Caremark rep was also able to Slack with several other colleagues–relatively advanced for an old world PBM I thought. Eventually the answer came back. The med was indeed tier one. But until we spent our deductible the med was tier 2. In other words if we were paying for the drug the price is $107. As soon as BCBS Massachusetts starts paying for it the price goes back to $29 (of which they only pay $19) as we have a $10 copay.

Why this has happened is beyond me? Is Caremark or BCBS Massachusetts suggesting another cheaper drug? I haven’t heard from them. Are they trying to discourage patients from getting to their deductibles? My cynical conclusion is that Caremark is trying to increase the revenue for CVS– its corporate pharmacy–which that accounts for 1/3 of all outpatient Rx.

Otherwise this pricing strategy makes no sense to me. Of course this is just another example of a completely opaque process. And that appears typical for American health care.

The “Antebellum Paradox”: What is it and why it matters.

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BY MIKE MAGEE

I recently made the case that “Health is foundational to a functioning democracy. But health must be shared and be broadly accessible to be an effective enabler of good government.” I also suggested that the pursuit of good health is implied and imbedded in the aspirational and idealistic wording of our U.S. Constitution, and that the active pursuit of health as a nation is essential if we wish to rise to Hamilton’s challenge in Federalist #1 and prove that we are “capable of establishing good government from reflection and choice.” So why are native white males lagging behind in health?

Our progress as a nation toward health was severely hampered from the start. The reality of self-government “of the people, by the people, and for the people” applied only to 6% of inhabitants, all white male land owners at the time. Health was never voiced as a priority, though modern day critics insist it is clearly implied in the promise of “life, liberty, and the pursuit of happiness.” But what was that promise worth in the late 18th century, in a nation that allowed slavery, disenfranchised women, and slaughtered and dislocated its indigenous brothers and sisters?

In those earliest years of the birth of this nation, in the first half of the 19th century, what was the state of health for enfranchised native born white citizens of this nation? Most may presume (as I did) that the general health and standard of living over the next two hundred years, as reflected in lifespan, was a straight (if gradual) upward slope. But what I learned from a bit of digging is that uncovering the facts on mortality, fertility, migration, and population growth during those early years of our nation is a complex venture at best.

Our federal government did conduct a census every ten years, but one hundred years passed before we reliably collected vital statistics including comprehensive birth and death registration. Beginning in 1850, age, sex, race, marital status, occupation and cause of death were supposed to be collected. But an audit in those years disclosed that mortality (for example) was 40% underreported.

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Return to McAllen: A Father-Son Interview

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By IAN ROBERTSON KIBBE

You are going to hear a little more about McAllen, TX on THCB Shortly. And before we dive into what’s happened there lately, I thought those of you who weren’t here back in the day might want to read an article on THCB from July 2009. Where then THCB editor Ian Kibbe interviewed his dad David Kibbe about what he was doing as a primary care doc in McAllen–Matthew Holt

By now, Dr. Atul Gawande’s article on McAllen’s high cost of health care has been widely read.  The article spawned a number of responses and catalyzed a national discussion on cost controls and the business of medicine.  It even made it’s way into the President’s address to the AMA.

Almost overnight, McAllen and the Rio Grande Valley were thrust into the national health care spotlight – the once sleepy border town became, not a beacon on a hill, but a balefire in the valley, representing much of what is wrong with the current medical culture.

But, McAllen wasn’t always like something from an old Western, where doctors run wild and hospital CEO’s compete like town bosses.  I remember McAllen quite differently.  I remember it, because as it turns out, it was where I was born.

It’s also where my father, Dr. David Kibbe, practiced medicine from 1980 to 1990. In order to find out how McAllen earned the dubious reputation it now has, I sat down with my Dad, and asked him what he remembers about that little border town on the Rio Grande.

Ian Kibbe: So Dad, what was your first reaction to reading Atul Gawande’s article?

David Kibbe: Well, Ian, it was sort of “oh-my-gosh, he nailed it.”   And, of course, a flood of memories, good and bad, came back to me about our time there.  My medical career began there, you and your sisters were born there, small town 4th of July parades, etc.  But I left after great disappointment and frustration.

IK: What were you doing in McAllen practicing medicine anyway?

DK: The National Health Service Corps sent me there to work in a clinic for migrant farm workers.  The NHSC had provided me three years of medical school scholarship, and so I owed three years of service in an under-doctored area of the country.  I speak Spanish, and so working as a family doctor in the Rio Grande Valley of Texas, which is the home of many of the country’s Hispanic migrant farm workers, was a good fit.  Hidalgo County, where McAllen is located, was the poorest county in the country, and there was a real physician shortage there in 1980.

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