Health care is in danger of missing the point.
(A repost from 2014 that’s relevant today thanks to announcements at HIMSS.)
In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at U.S.News saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up.
I was aghast. There were good editorial reasons to not sell out to this particular company. But what shocked me was that the publisher did not recognize the value of the school rankings data, laboriously collected and coded each year. That was the gold mine we were just beginning to explore.
What was truly crazy was that the deal included the rights to all education content — the database, the archives, and anything produced in the future — in perpetuity. USNews.com would no longer have the right to display its own content about education, nor generate tools fueled by the school information database. Only the print magazine would be allowed to publish the rankings. To those who didn’t understand how the internet was disrupting publishing, this seemed smart. Newsstand sales of the magazine and annual guides were still a dominant source of revenue. To geeks like me and my team, it seemed insane to lock the magazine into a model that denied the value of data.
So what happened? The deal was halted. I quit. The start-up’s IPO fizzled. The print magazine folded. Only the USNews.com website remains, fueled in part by revenue generated by the school rankings and the consumer-facing database tools we envisioned back in the day.
When I shared this story with e-Patient Dave deBronkart, a patient advocate and health data rights expert, he said, “The publisher thought they were in the print magazine industry, in the same way the railroads famously thought they were in the railroad business. The railroads learned the hard way that what customers needed was transportation, and magazines have learned that what people need is the information.”
I think, unfortunately, that a similar misconception is clouding the conversation about electronic health records.
To me, the parallel to the dot-com bubble is eerie. The EHR boom is in full swing, money seems to be gushing out of Washington, and some people are cashing in.
The most popular EHRs are closed systems. In best case scenarios, people can look, but they can’t touch, correct, or create tools with the data. To take one example, the standard contract for Epic is so restrictive that Paul Levy, former President and CEO of Beth Israel Deaconess Medical Center in Boston, has described their customers as victims of Stockholm syndrome. John Halamka, Chief Information Officer at Beth Israel, has compared its sweep to the Invasion of the Body Snatchers. (For a less dramatic comparison of major EHR vendors, read health information technology analyst John Moore’s rundown.)
Time is running out for anyone to have influence over these choices: office-based physicians and hospitals are implementing EHR systems at a fast clip. As Moore told me, “Putting in these big enterprise IT systems is a little like pouring concrete — once it sets, it is nearly impossible to chip out.”
Maybe health care leaders can learn from all the other industries that have gone before them into the disruption mill. Maybe they will pause to consider: What is the value of the data we generate? What is the potential for good if we are able to share that data with other health care organizations? What if we could escape the EHR trap and create a system that welcomes innovation? How might we build in participation from all stakeholders, including patients and their families?
What business are we in, anyway?
I’m hopeful that the upcoming Health Datapalooza will provide some inspiration for those health care organizations who have not yet made their choice. Because only people who do not understand the value of data would sign it away.
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We had a fantastic conversation about this post in 2014 — new thoughts, questions, etc. welcome on either thread or on Twitter, where @granitehead aka Brett Johnson shared: health care is in the business of shared decision-making so should build data-sharing systems. What do you think?
Featured image: Patient Records by Ken Fager on Flickr.
Interesting post. Well, I hate to sound like a cynic, but I’m afraid the business of healthcare is not shared-decision making. The majority of healthcare providers and players in healthcare are in the business of making money.
To change healthcare for the better, we need to work our way to a place where doing what’s better for people’s health — data transparency, interoperability, giving patients ownership of their health data, making it possible for doctors to better partner with their patients, you name it — is what helps healthcare businesses stay in business.
I am perpetually a bit nauseated by the way business imperatives warp the social and ethical mission of healthcare providers. But it’s there so we need to learn to work with/around it.
Also, when I say the business of making money:
At a minimum anyone in healthcare needs to stay financially afloat. I had to leave the community clinic where I worked because I was being pressured to be “more productive” meaning churn more patient per day. My trying to do my job as my aging patients need me to do was a threat to this non-profit clinic’s financial viability. Ugh.
Otherwise, many entities in healthcare are trying to grow, attract investment, generate profits, box out competitors, and basically live the American business dream.
How to we make sharing data for the patient’s benefit essential to that business success? I hope you’ll find some answers for us at Health Datapalooza.
Thank you, Leslie! I wouldn’t call your observations cynical. I’d call them realistic. And I’d love to focus on that question you get to at the end of your comments:
How might we make sharing data for the patient’s benefit essential to the success of health care as a business?
Will think on it and await (hopefully) more input.
I always feel the that I have the same reaction to these conversations, that there is an inherent flaw in a system that uses the word “business” to describe a network of actions, entities, and institutions that are tasked with improving, maintaining, and influencing health.
Let’s get this out of the way. I believe in single-payer models. I believe the US is so far behind the curve that we’re at risk of falling off the map. I want to see these issues solved alongside a national health care system that is tasked with upholding a social contract backed by the government to support its citizens. Interoperability and sharing of data is a necessity with these types of systems – it’s baked in.
I know that single-payer isn’t all that it’s cracked up to be. We’re not going to wave a magic wand to make it happen, and if/when it does, there will be issues. But, I do have to wonder, would moving towards that help?
I don’t believe that most, if not all, corporations or business have my health and wellness in mind when they are thinking about their bottom line. Is this the case with those involved in healthcare? Maybe.
(I apologize for the rambling incoherence, I’m low on caffeine and food.)
I wonder if there are back doors to be found. Hacks of the current system. Or ways to design for a possible future that includes ways to share data. My fear is that anti-sharing designs will set like concrete, in John Moore’s words, and defeat us for years to come.
I’ll point, as I always do, to my favorite Diana Forsythe quote:
“Whose assumptions and whose point of view are inscribed in the design of this tool?”
See: HIPAA is SO 1996
http://e-patients.net/archives/2009/09/hipaa-is-so-1996.html
I’ll also lean on the wisdom of Clay Christenson who points out that if you bow down to the frames of existing aggregates (such as an org chart or a database), you may miss the signal that a single person or piece of data is screaming out to you.
See: False boundaries in health care
https://susannahfox.com/2014/05/17/false-boundaries-in-health-care/
Let’s not make assumptions that the future of health care will look like the past. Let’s not bow down to the current frame, but instead build for what could be, by listening to patients and caregivers and noticing how they work, not just how clinicians or engineers work.
Great article! Thanks for sharing your insight. What Leslie said is true and unfortunate. I believe that we can change the status quo through patient demand. Our healthcare system is driven by money and in a way it needs to be to continue to thrive and push out the incredible research that we all rely on. But, the patient is the customer. They sit in the driver seat and they don’t even know it. If patients demanded their providers to engage them in shared – decision making and demanded to have direct access to their medical records then we may see the change occur. Sounds so simple, but our patients don’t know what to ask for. They are so accustom to the traditional model that they don’t know the benefits they are missing out on. We need to educate the public and the patients on the possibilities.
Again thanks for sharing your thoughts on this subject. It is so important!
Thanks, Sarah! I like that line: Patients sit in the driver’s seat and they don’t even know it. How might we get them to take the wheel?
Hm, I would say that patients should be in the driver’s seat but generally are not…and many don’t even think this is something they should be pushing for.
Boycotts have worked for some movements, because it’s a way of pooling the economic impact of many smaller influencers.
If many patients refused to work with health providers who didn’t provide full access to their data, a collaborative approach, etc, this would put pressure on providers.
Patients don’t usually control the dollars to providers (direct-pay is an exception) but the insurers don’t deliver the dollars to providers when patients don’t have encounters with the providers.
On the other hand, I know many patients feel they don’t have alternatives…it can be very hard to find another suitable doctor who will see you and accept your insurance 🙁
This is the health and technology issue of our time: how to make personal information available, secure, verifiable, and private all at once. I’m looking forward to #hdpalooza15 to explore these issues, and genuinely hopeful we’re getting close to finding a way to address them.