Guest Post by ANONYMOUS PHYSICIAN

4/18/13 …finally certified as a PCMH with NCQA. We’re meeting Meaningful Use requirements and are busier than ever. It seems I’m staying at the office later and I haven’t seen any of the expected profit yet, most of the increased reimbursements have barely offset the added costs as far as personnel and IT, but now we can prove the quality of the care we provide…

4/25/13 …at dinner with the family I realized how chaotic my home life is, no structure like at work. I was late getting dinner ready, Thursday is my night to cook, and I didn’t have all the ingredients so I had to run to town and still forgot to buy milk. I needed to pay bills but hadn’t transferred any money to the checking account and had used up the last of the checks without ordering more…That night the twins Annie and Amy were pestering my wife Kate about soccer camp, and Glen was talking about his latest baseball game, he made the varsity baseball team as a sophomore playing first base. Kate, who runs her own business as a florist, observed that at work she has systems to track orders and deliveries, but at home we can run out of milk and no one says anything. It got me thinking…

5/16/13 …after dinner the kids had finished their homework and were starting a game of Monopoly and Kate was about to settle down with her book when I called everybody together for an impromptu family meeting. I proposed that we build a Family Centered Personal Home (FCPH) based on the same principles of the PCMH I had learned at work. I suggested we could have written family procedures and protocols for all the important stuff, and we could track our progress if we digitized and automated as much of it as possible. We would develop a team approach with everyone functioning at the top of their abilities. The kids were excited when I told them we would each need our own IPad connected with the home computer, but Kate was skeptical and wondered how it would help and what it would cost.  Eventually my enthusiasm prevailed and Kate agreed to try. I know that if we can collect enough data and use the right quality metrics we can optimize the FCPH…

8/22/13 …it’s taken all summer but I think we’re ready to begin in time for the start of the new school year. I used all the spare time I had this summer writing protocols for everything from paying bills to homework and piano lessons. I took the money we would have spent on weekend outings and invested in a new home computer and IPads for everyone. I had an IT guy at work help me modify some basic software and spreadsheets to structure our initial data collection, later I’ll need to invest in better software to help interpret the data we collect…

8/29/13 …Ready to roll! I explained tonight that the new computers are tools and not toys, we’re going to use them to track our progress. I showed each of the children how to use the preloaded spreadsheets to track their time spent on homework, chores, piano and violin practice, school attendance using GPA as an outcome metric, and so forth. I included detailed procedures for everything from teeth brushing to basic hygiene and meal prep, expectations for laundry, vacuuming, dishwashing, and lawn mowing… Glen was excited to see I’d included a program to track his baseball batting average. It’s important for children to have some unstructured time to pursue their own interests and hobbies so I built that into the detailed preloaded schedules customized for each of them. For Kate and me, we have the added responsibility of tracking household finances, kitchen and pantry inventory, transportation expenses maintenance and repair, etc. I mirrored some of the children’s software on our computers too so we can have reminders of important events like recitals and soccer games….

8/30/13 …today I introduced the family to the rest of the team, just as with the PCMH Kate and I can’t be expected to do it all, so I’ve hired some surrogate help in the form of tutors, nanny, personal trainers, gardener, and housekeeper. I have outsourced accounting, IT development and most home maintenance responsibilities. Extended family can step in to fill some functions when Kate or I aren’t available. I’ve had to forgo any retirement savings this year and we might miss a mortgage payment or two, but it will be worth it in the name of quality…

9/2/13 …I had to password protect the Intimate Relations protocol and data set on the shared server, it was generating too much interest. I need to talk to Kate about measuring quantity as well as quality as a metric…

10/10/13 …pulled Amy aside tonight and had a stern father-daughter chat, she just hasn’t been tracking her data like the rest of us. She complained it was too much work, that all the data entry was actually keeping her from performing the tasks she is supposed to track. I explained that I completely understand, and that based on my experiences at work the documentation is always more important than anything else so sometimes you have to fudge a little bit in order to get everything done. Without the data we can’t measure how well we’re doing and if we can’t measure it how can we improve? She cried and tried to argue that sometimes the intangible things in life are more important, but in the end she saw things my way and promised to try harder…

12/12/13 …During dinner tonight everyone was quiet, the cacophony of conversations we would have heard last year at this time is gone, instead everyone has their head down rapidly pecking away at their computer screens documenting their activities of the day…we don’t seem to be interacting nearly as much but the pantry is well stocked and the oil/filter in the pickup was changed on time for once…

1/16/14 …reviewed the children’s report cards from fall term and Annie’s grades have fallen. Looking through the automated reporting features of our user friendly software it appears she has been keeping up with her homework, and the chore tracking feature reveals 100% performance, everyone else is tracking around 65% to 80% with a performance incentive set at 72.3%. My personal observations make me question the veracity of Annie’s outcomes, but it’s hard to dispute the data…

2/13/14…Glen is in the front yard playing catch with Nathan his personal trainer, the twins are at the kitchen table with Brenda their mentor working on their algebra, both tasks I used to have to do. This has freed me up to do more important things… I just discovered all the tires on our mountain bikes are flat, they’ve probably been that way for months and nobody noticed, I’ll need to add a bicycle tire pressure monitoring protocol to Glen’s garage inventory and maintenance duties, maybe I should sell the bikes, we haven’t used them in almost a year…

3/27/14 …spent the first couple of days of spring break tweaking our protocols and procedures for the FCPH and letting the kids catch up on their reporting. Was surprised to learn that Glen isn’t going out for baseball this year, he says he just doesn’t have the time…

5/15/14 …Amy is still having a hard time, tonight she complained that our relationships are suffering, she observed that we haven’t played a game of Monopoly in over six months and our dinner conversations are curtailed as we all rush to finish the meal and clean up so we can complete all the documentation needed for the FCPH. It was difficult for me but I had to explain to Amy that in any endeavor like this sacrifices are necessary. At the office before we became a PCMH I used to think that my relationship with my patient was paramount and that I could effect a better outcome by getting to know and bonding with my patients respectfully. Our transformation to the PCMH taught me that I wasn’t doing such a good job. Some of my patients that I’d been treating for years weren’t following my advice and were skewing the metrics used to incentivize me so they had to be discharged from care. I explained to Amy that just as I’ve had to sacrifice any antiquated notions about relationship building in clinical medicine in order to optimize my outcomes, so too must she jettison any such unreasonable expectations as we perfect the FCPH…

6/18/15 …our household is running like a well-oiled machine, and I can prove it! We had to let the housekeeper and gardener go so we still have some issues in those realms, but everyone has very well defined roles and responsibilities… sometimes there can be a lot of finger pointing when things go wrong. I haven’t talked to Amy in weeks, there are still some discrepancies in Annie’s data and actual outcomes I haven’t put my finger on yet, and Kate seems more distant somehow. Glen no longer talks about going to medical school after college. On the computer I can show you how we’ve improved on so many metrics in the last two years, I can’t imagine trying to run a household without the FCPH…

The author is a family physician in solo practice.

Opinions expressed by “On Health Care Technology” guest bloggers are their own.

The very first thing Adam and Eve did after acquiring the wisdom to distinguish between good and evil was to cover themselves up and hide from view. Privacy was the first concern of a newly enlightened humanity. The punishment for acquiring this peculiarly human self-awareness was harsh, swift and unforgiving. Yes, it is legend, but you should never underestimate the genius of an author whose collection of stories has been the number one global bestseller for almost six millennia and counting. Today, a new legend is forming. If we agree to take off our loincloth and step out from the shadows of our privacy, the eternal punishment of blood, toil, sweat and tears will be rescinded by a new generation of supreme beings.

Is it possible for us to unbite the proverbial apple? Is it possible for us to revert to naked grazing among the magnificent bounty offered by the new gods, completely oblivious to benevolent surveillance and unobtrusive discipline? Our government thinks so. The billionaire class thinks so. And many of us agree and think it’s for the best. After all, honest people have nothing to hide, nothing to be ashamed of, and privacy has no tangible benefits anyway. Better yet, a little less privacy, and a little more supervision, for criminal elements and people we don’t like, is probably a good thing. Insisting on an archaic “right to be let alone” in a globally interconnected world, other than being laughable, is hindering the democratization, simplification, cheapification and commoditization of all life’s endeavors, including prevention of disease and curing cancer. Privacy is the last barrier to an eternal life of leisure and joy.

There is currently a well-coordinated, well-funded and extremely successful campaign to help us shed the ball and chains of privacy. Whereas three quarters of a century ago we realized that work made us free, today we recognize that sharing our private information will bring us personal liberty. Freedom and liberty, contrary to what you may have learned in kindergarten, are earned by hard work and individual publicness. Since the innocent days of prancing naked on the banks of the Euphrates, we learned the hard way that free markets are the engine, the heart and soul, of humanity, and free markets are hampered by the original sin of privacy, which introduces an information asymmetry that makes the markets anything but free. To liberate ourselves, we must liberate our markets first.

America, as usual, is leading the way in liberating international markets. Our unique form of government with its three famous branches of corporate, lobbyist and executive is best suited for freeing humanity, because our government has evolved from representing a small group of citizens to representing global markets. For those too old to see the glory, rest assured that there are large checks flowing freely between the three government branches and balances are meticulously calculated by our leaders. The Singularity, you see, is not a nebulous prophecy about cyborgs. The Singularity is here and now, as this is the precise moment in human history where governance, technology, apathy and savvy leadership are perfectly aligned to take us back to the future Garden of Eden.

On Friday, July 10, 2015 the 21st Century Cures Act was passed by the House of Representatives of the U.S. Congress with overwhelming bipartisan support. Relatively speaking, the bill is rather short and concise at 362 pages, so one can be certain that our wise representatives have read every syllable and understood all the technical intricacies of this groundbreaking legislation before casting a vote. Having been a skeptic in the past, I must admit that I am particularly awed by the mathematical prowess of our legislators who empowered the Secretary of Health and Human Services to require that scientists use Bayesian statistics in their pharmaceutical research.

The Act that will cure us in the present century is the culmination of a gigantic effort by the corporate and lobbyist branches of our government to bring potentially lifesaving medicines to the market faster, in larger numbers and at lower costs to the manufacturers. To accomplish this the Act is cutting through the useless regulatory red tape of the Food and Drug Administration (FDA) and bypassing the obsessive scientific insistence on rigorous clinical trials, which can take decades to produce an approved medication, while people continue to needlessly die. Instead, an iterative and more agile process is being put in place by the Act. Do a little research, a little testing, a little checking and regulating, fail soon, fail often, and pivot quickly based on post-market laboratory surveillance.

Sure, people will continue to die (not necessarily the same ones and perhaps a few more), but now they will die for a good cause. The road to heaven, you know, is paved with necessary atrocities. Privacy of course is not congruent with the needs of a learning laboratory system, and the Act has taken the first steps to remove some of the anachronistic obstacles erected by the privacy sections of HIPAA. Once the Cures Act becomes the law of the land, personal health information will become shareable for research purposes, and the cumbersome need to obtain informed consent from human research subjects will be waived if illustrious researchers estimate that the experiment poses “minimal risk” to those experimented upon. Illustrious researchers have always been humanitarians first, and scientists second (savage sadists was a distant third), so we should be fine.

Less than a fortnight after the Cures Act swished through Congress, the lobbyist branch came up with a whitepaper to guide the next steps in our road to redemption.  Calling it as Oracle, IBM, Intel and PhRMA, all esteemed members of the corporate branch, see it, the lobbyist prescription is to dismiss any shreds of privacy and self-determination laws left standing, including the Common Rule which protects the rights of human subjects of medical research. The Common Rule is the American implementation of the Declaration of Helsinki, which was developed by the World Medical Association, following the peculiar events that led to the creation of the Nuremberg Code. The Common Rule is thus a relic, an overreaction to a bunch of idiots who thought they could somehow engineer a perfect race of humans, and among other things engaged in ample exploratory research. Stuff like that cannot happen anymore, because now we have Internet, so it’s time to get over it, put it all behind us and move forward.

Privacy rules, you see, have “opportunity costs” for the corporate branch of government, and as such are strongly affecting the movement of checks between the branches, and the size of balances everywhere. The lobbyist whitepaper is making an exceedingly compelling argument for permitting unchecked collection and trade in all sorts of personal information, not just medical or genomic. The banks have been doing it forever and it’s all working just fine, other than a little innocuous leakage into marketing databases. Why should other corporate clients be treated differently than the banks? It’s simply not fair, and “lives are being lost” because of our failure to equally protect all corporate members from undue regulatory burdens. A stark example of unfairness is the preferential treatment afforded to the Centers for Medicare and Medicaid Services (CMS).

On November 13, 2014, the CMS published a final rule regarding its physician fee schedule for 2015. Tucked neatly inside it, there is a little section promising to “provide clear legal authority for Health Insurance Portability and Accountability Act (HIPAA) Covered Entities to disclose any required protected health information” to the CMS. The “required” disclosure is for information ranging from clinical to “health behaviors” to a catchall “other data”, such as “participant employment status, participant educational degrees pursued/achieved, and income”, all “with identifiers that allow linkages across time and datasets”. The subjects of said disclosure are all entities “participating in the testing of past, present, and future models” funded by the CMS, including people not covered by the CMS, which is pretty much all people in this country.

The CMS needs the information to evaluate results of research projects, which by its own admission could have adverse effects on participants, with no mention of informed consent being needed from test subjects. How is this fair? If the CMS is asserting such latitude, why shouldn’t the corporate branch enjoy equal opportunities? What has the CMS done for you lately? If you are going to trust someone, why not trust a good solid brand-name, like say, the Coca-Cola polar bear, or the Marlborough man? If somehow doctors came to your mind in this context, the lobbyist whitepaper is quick to point out that, by winning Jeopardy, IBM’s Watson proved once and for all that “doctors are no longer the experts they once were”. And no whitepaper can be complete without reminding us that if we don’t get our act together quickly, China is going to eat us for lunch.

So that as they say is that. We must comply. Yes, for some of us it will be a little awkward in the beginning, but many have already made the transition, and frankly they seem to be just fine. This is after all an inevitable stage in human development. After losing our innocence, we began eking out a meager and perilous living by scratching food from the dirt beneath our feet. We looked underneath the dirt and discovered carbonized dead vegetation and digging deeper we found other fossilized lifeforms. We sustained ourselves comfortably on the dead bodies of those who came before us. For a brief moment, we looked up and considered the infinite bounty of the universe, but that seemed too hard.  The disruptive innovation of our times is to fast forward to a distant past and turn on each other to extract untold fortunes from mass digital cannibalism.