Book Review: Our Bodies, Our Data by Adam Tanner

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. :-)

Google: https://tinyurl.com/TESVGoogle 

Amazon: https://tinyurl.com/TESVAmazon

Thought Experiments - An Inexpensive Tour of the Entire Universe

Is there a connection between the COVID-19 pandemic, four students who skipped a class to watch a movie, Greek philosopher Socrates, and a clock tower in Switzerland? Yes, these are all involved in various thought experiments floating around in this universe. A new book titled "Thought Experiments - An Inexpensive Tour of the Entire Universe" captures them all touching a wide range of topics such as economics, ethics, physics, mathematics, medicine, democracy, artificial intelligence and machine learning. Carrying about three years' worth of my work, written in simple language, the ideas discussed in this book may serve as material for family discussions during this lock down, party conversations with friends or intriguing classroom debates. Once you get the book, a virtual tour of the entire universe will be on your fingertips. Consider jumping on board to support the cause. 

You can buy the e-book from Google: https://tinyurl.com/TESVGoogle or from Amazon: https://tinyurl.com/TESVAmazon

Amazon has a paperback edition also available. Whichever version you buy, please provide feedback to me and write reviews on those sites to help improve/promote the book. 

As I have promised in the preface, 100% of the generated profit from this book sales will be donated to Solvanam, a non-profit web magazine run by volunteers spending their time and money to help improve the discourse in Tamil, publishing high quality articles, discussions, reviews and literature covering all the topics this book touches upon. I published many of the chapters in this book as individual Solvanam magazine articles in the years past, that vouches for their support to discussions related to STEM type topics. 

After Google and Amazon take their service fee, I will hardly receive $1 per book. I am hoping to sell 1000 copies so that I can raise $1000 to donate. I know 1000 copies is a really big target to reach. Please help out by buying a copy for yourself and 10 more to give to your friends & family. Ask your extend circle to buy. Hopefully they will all thank you along with me. :-)

-sundar.

Book Reviews to take your mind off of the big topic! :-)

Enjoyed reading couple of short & simple books. There is a Credit Union (US parlance for a small bank type institution that is non-profit and member owned) in the town where we live in. I serve as a Supervisory Committee volunteer. This is similar to being on the board, monitoring the functioning of the organization as an outsider (i.e. not part of the paid management chain) to ensure that it is run well. The CEO of the CU selects a book each year during the annual retreat and gives a copy of the book to all the employees. Thus, ended up with a copy of "Humble Leadership: The Power of Relationships, Openness, and Trust" by Edgar H. Schein & Peter A. Schein. I found the title appealing and so picked it up to read. They seemed to have created an industry out of this idea, writing multiple books, starting a consultancy business, etc. all connected with the "Humble" notion. 

Basic thesis of the book is this: In the Western hemisphere, relationships, interactions and even how people are managed, all tend to be too transactional. This is not good in the long run as it becomes difficult to develop trust with people you work with but don't really know well. So getting to know the other side a little better will be beneficial in the long run. 

I have noticed this overall trend in US over the last three decades since many of my colleagues often know next to nothing about their other colleagues or their managers. Even simple personal details like is someone married or have kids might not be known as many think those are personal details we don't need to know or divulge. The authors call this Level 1 relationship, where there is a not a lot of context to interactions. What is being said could be taken at face value without any underlying meaning. Book encourages everyone to get to Level 2 relationships where you know the person you are dealing with a bit better, understand their background, family, social/political/business views so that you are able to understand what they are saying/committing to a lot better. Trust can be high when you know the person you are interacting with very well. Authors then talk about Level 3 relationships where you know the other person extremely well, almost like a close family member. While it may be a desirable state, cultivating such close relationship with everyone is very difficult as it involves a lot of time and effort. So, the authors advice the readers to focus on getting to Level 2 at the least, with all those you work with regularly. They go on to cite examples of how this mode of working will be better in hospital, military, business and other settings. 

This is all very different from the Eastern culture, where the pendulum tends to swing to the other extreme. Among Indian colleagues, it is a very common practice to invite all the office colleagues for their sons/daughter's weddings or other family functions. In Asian cultures what is being said often need to be contextualized based on who says it, what are the circumstances, etc. While I understand the authors' p.o.v., since I have been on both sides, I do think both sides have advantages/disadvantages and so we need to find a balance. I like the low context models where a commitment is a simple promise that will be kept & delivered without any need for context/interpretation. Of course the authors are careful to point out that they don't mean letting people slide or not take responsibilities for the commitments they make. I came away thinking that while there is certainly value in what they are prescribing to the Western hemisphere, the East can benefit from a flipped version of the prescription. :-)

On a totally different area, read a small book called "IKIGAI - The Japanese Secret to a Long and Happy Life" by Héctor García and Frances Miralles (translated into English by Heather Cleary) based on a pointer my brother gave me. Authors have done a lot of research in areas defined as Blue Zones on the planet that have a very high density of centenarians. Okinawa in Japan, Sardinia in Italy, Loma Linda, CA in USA, The Nicoya Peninsula in Costa Rica and Ikaria in Greece are these blue zones. Digging through the life styles of the residents of these five places, authors derive simple conclusions that can potentially keep us all happy and healthy living long lives. The Japanese word Ikigai, symbolizes this whole life style and roughly means "the joy of being busy". People in these places are not extraordinarily wealthy or has accomplished some great career success or any such thing by which society may be measuring each other. But they all have a continuing purpose to get out of bed each day, never retire (even when they are 90+), form close knit communities they consistently hangout with, help each other, each simple meals to fill only up to 80% of their stomach and in the end develop the needed physical and psychological resilience to lead a long and happy life. The Ikigai notion (similar to raison d’etre in French) while practiced in the other four blue zones as well, its integration into daily lives is a cultural part in Japan and hence the title of the book. Authors point out a lady who works in a paint brush manufacturing plant and an owner of a sushi restaurant, who all seems to have found an inner peace in doing a perfect version of their what appears to be a simple job for years. They are respected by their peers for achieving this zen quality in their work though it may not have resulted in a lot of material wealth for them. For example the sushi restaurant owner never bothers to franchise their business or even make their one restaurant much larger but continue to focus on the quality for so many decades while still shutting down the restaurant once their purchased stock has been consumed. There is a chapter dedicated to discussing Logotherapy invented by Viktor Frankl (whose thin book Man's Search For Meaning is another great read) and mapping it to this domain. While we continue to live in world bombarding us relentlessly with Western individualism and material wealth & success, this book's prescription of a simple life with everything in moderation that is possible for anyone to follow is quite a welcome message as we grow into our old age.

Regards.

-sundar.