As a part of an office project, we were researching data mismanagement in various corporate sectors. During that process a long time colleague of mine came across this book titled "Our Bodies, Our Data - How Companies Make Billions Selling Our Medical Records" by Adam Tanner, read it and gave it to me. Tanner is a long time journalist/academic and has done a lot of research to write this easy to read book. Without any hyperbole in his language, he manages to get our blood to boil! First line of the first chapter (Introduction) starts with, "Soon after you tell your doctor about an intimate medical problem, data about your condition are sold commercially to companies that have nothing to do with your treatment or billing."
Initial chapters talk about how in the 60's and 70's pharmaceutical industry tried to get an idea of the prescriptions being filled in each pharmacy by sending their reps to individual pharmacies. They paid some money to the small pharmacy store owners to reveal the details of the prescriptions being filled at their stores. With the introduction of computers, the process became easier/faster in the late 70's. In the 80's and 90's Cardinal Health started doing this analysis on a massive scale and found itself on the Fortune 500 list at the 145th spot. It then created a new company called ArcLight and competed with IMS Health, a veteran in this realm, by making pharmacies ArcLight partners in business, sharing profits (rather than just paying them a fee like IMS did) and soon was processing about 60% of the US pharmacy records. Eventually with IMS buying off or managing to kill off competition, now a days each Pharma company pays $10 to $40 million per year to IMS to get access to their data. Doctors who were irritated by the extent of tracking IMS does about their prescription practices, got the US states of New Hampshire and Vermont to pass laws against it. But IMS fought it all the way to the US Supreme Court and won the right to track/sell individual doctor identified prescription patterns/numbers. Book even quotes a gentleman named Larry Weed, one of the founders of EMR (Electronic Medical Records) saying, "The Doctor shouldn't be making a judgement of anything."
What initially started as a good attempt by drug companies to do market research, mushroomed into a huge privacy problem, Clinton administration passed HIPAA (Health Insurance Privacy and Accountability Act) in 1996, proclaiming that patients have privacy rights. This law is still held up as a paragon of patient rights/privacy protection statute even today. My US friends/colleagues who work in healthcare themselves incorrectly believe that HIPAA provides lot more protection than it actually does. But in reality, this seems to be a joke since it is riddled with so many holes. For example, while doctors, nurses, insurance companies type providers are governed by HIPAA, companies like IMS Health (now part of IQVIA.com), that don't get classified as care providers are not covered by HIPAA and so can do whatever they want! Even the covered entities can legally sell the data as long as they de-identify the data by removing individually identifiable information (like name, SSN). But using today's data crunching techniques, it is so easy to re-identify all this data with a simple home computer and publicly available information. This has has been proven by multiple researchers. As an example, you can go to the website aboutmyinfo.org and enter your DoB, gender and Zip code to see how close it comes to individually identifying you. If it is not unique already, any additional information related to the patient can lead today's data tracking systems to easily re-identify the individual in question.
Now this has moved far beyond pharma companies, and covers hospitals, insurance companies, drug trial companies and so on. Whenever companies that deal with medical data are approached with questions by journalists about their business model, they either dodge (as it may bring in more regulations restricting what they can legally do) or provide some vague explanation/PR statement of how wonderful it is when things work perfectly. But in reality things never work as professed. For example, when a person is hit by a car and taken to the hospital in unconscious state, if the doctor in the emergency room can look up the person's medical history, understand the victim's past, any allergies, Living Will/DNR (Do Not Resuscitate) preferences, before starting the treatment, it would be fantastic. But till date this is not possible in the US due to multiple incompatible systems in which patient data is stored without providing any universal easy to access data model. Such systems do exists in other countries but is blocked by multiple lobby groups that prevent such a system being developed in US. Author claims that whenever he tried to ask executives or company reps that tout the advantages of digitized medical data, they always talk about some vague potential synergy but when pushed to give specific examples, back off and run away. Author had traveled around the world to Korea, Japan, China, European countries to assess the extent of this problem. While Europe is a little better, issue exists allover the world. There is hardly any discussion or laws on these topics in many parts of the world allowing the same data miners to extend their reach internationally.
In the Chapter 11, Tanner talks about President Obama's initiative to get EMR deployed widely, spending about $31 Billion dollars to subsidize the migration effort to hospitals and smaller practices. That effort has made billionaires out of companies like Epic, Cerner that are massive EMR service providers. But since the law didn't require that the EMR systems should inter-operate, each company intentionally created its own silo, locked in its customers and made sure competitors can not access the patient data they manage. Just couple of months back when Trump administration started pushing for more patient rights that will allow patients to access their own records, Epic campaigned against it vigorously saying it will compromise patient privacy! Judy Faulkner, CEO of Epic claims in an interview with the author that standardization is like asking iPhone developers to use Blackberry technology because we think that is the only way iPhone and Blackberry users can talk to each other! Since I come from the tech world, that analogy doesn't make any sense to me. It is more like Yahoo mail and Gmail can't send/receive information to each other since they use different technologies. This should be easy to solve. Apple, Google, Intel, Microsoft, Amazon like companies are all for opening up and standardizing the patient record databases but are so far struggling to make headway and have shuttered several initiatives since the domain is fraught with emotions, dominant players worried about losing their market share, common public not understanding how better things could be, etc. as discussed in the book.
Few years back Intel's Ex-CEO Craig Barrett, had a heart attack while visiting his ranch in Montana and had a very tough time getting his own medical records to the hospital treating him. Trying to solve the problem, he started a company to help individual patients get access to their full record. The initiative didn't go anywhere. Currently in US, we are in a paradox were individual patients cannot access their own lifetime medical record in any comprehensive way, while a for-profit data miner can compile the dossier legally and sell it.
If rational solutions are needed, they are easy to develop as discussed in the last chapter. More transparency, more consent, and more control. Book closes out proposing a series of simple solutions related to more open information sharing with patients, compatible patient record systems and EMRs designed more to facilitate better patient care instead of being focused on billing and lawsuit prevention (by making doctors spend an enormous amount of time documenting each visit for CYA). Even this New Yorker article by the popular writer Atul Gawande attests to these same issues.
On a related note, please listen to this podcast where EconTalk host Russ Roberts discusses the price of cancer drugs in the US with Dr. Vinay Prasad: https://www.econtalk.org/vinay-prasad-on-cancer-drugs-medical-ethics-and-malignant/ I look forward to hearing my pharma research friends' feedback.
Regards.
-sundar.
P.S. Have you bought the Thought Experiments book yet? Help me get to the "1000 copies sold" mark. I am barely at 100 now. :-)
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