Regarded

By LYGEIA RICCARDI

This is the second post in a series on digital health inspired by Aetna and Apple, whose developing partnership is poised to impact millions of Americans. Part 1 is Mystery Mission in LA.

Getting to Patient Engagement

“Patient engagement” is a popular phrase in healthcare these days, but how do you actually get people to take a greater role vis a vis their own health and healthcare? As the first Director of Consumer eHealth at ONC in the US federal government, I spent several years making the case for strengthening patient engagement with technology, and trying to figure out how to make it happen at scale. With Aetna and Apple working together, I think we’re a step closer.

Using the $36 billion+ federal “meaningful use” program–which catalyzed doctors’ migration from paper files to EHRs—as a hook, we required hospitals and doctors to give patients the capability to access (and use or share) their own health records online. The proportion of healthcare providers who give patients electronic access to their medical records has skyrocketed along with EHR adoption. As of 2015 (the most recent data available from ONC), nearly 70% of US non-federal acute care hospitals enabled patients to view, download, and transmit their health records electronically—up from just 10% in 2013. That’s a huge step in the right direction, but we’re still far from achieving the vision I share with an impassioned community of changemakers: a world in which patients live healthier, fuller lives that revolve around meeting their own personal priorities—supported by doctors/nurses, family members, communities, and digital data and tools.

At ONC, we summed up the systemic changes needed to achieve this vision with “the three A’s”:

• Access—Digital access for patients to information about health, including their own medical records
• Action—Digital tools including apps and wearables that help patients to take concrete action, informed by data from their medical records and other sources
• Attitudes—A culture shift from a relatively paternalistic model of healthcare that focuses on “sick care” to one in which patients and families are at the center of their own health and care, and are recognized as taking the lead in daily activities that impact their health, whether through prevention or management.

The partnership between Aetna and Apple could push us significantly toward achieving all three As. In the Access bucket, through health insurance claims, Aetna likely holds the data needed to compile a unified, comprehensive health record for an individual patient from multiple providers. And if Aetna expands use of the Apple watch to all of its 23 million members, that’s a significant swath of the population. In the Action bucket, the Apple watch has its own clean interface and reminders to encourage healthy behaviors, and links to a wide variety of compelling specialized third party apps, devices, and tools.  Finally, the importance of the final A–changing Attitudes, is often underestimated, but it’s here that Apple’s unique brand appeal could turn the tides in how we think about health and healthcare.

My medical records are irrelevant. Or scary. Or boring!

The public is still learning about the online availability of their medical records, though more than a third who have such access still aren’t aware, according to a 2016 survey from Accenture, which also found that people ages 65 to 74 are the most likely to access their EHR data to manage their health, while people 18 to 34 are the least likely. Not surprisingly these “young invincibles” are also among the least likely to buy health insurance under the Affordable Care Act.

Whether young or old, for many of us, not thinking about health at all is the ideal—it means there is nothing wrong—no immediate threat to the body or the wallet. On a deeper level, though, perhaps we fear that poking around in our health records might reveal that we’re not as healthy as we thought. Or even remind us that we’re mortal, a reality most Americans are skilled at avoiding.

And why would anyone choose to engage with the healthcare system unless they absolutely had to? It’s chock full of bad associations beyond illness and mortality—including huge and unpredictable bills and poor customer service. Besides, most people believe their doctor has everything under control… right?

Enter the Most Powerful Brand on Earth

Have a look at the latest ads for the Apple’s watch ? Beautiful, athletic people in cinematic surroundings. These images couldn’t be farther from a dull or preachy public-health PSA or pamphlet urging you to get more aerobic exercise or eat more fiber. Apple has topped the list of the most powerful brands in the world for seven years straight. It represents innovation, creativity, and good design. Think different.

What if Apple, with its brand appeal bolstered by marketing dollars, can help us “think different” about health and healthcare? If Apple can lend its luster to the mundane yet often difficult tasks on which health depends—eating well, moving enough, sleeping well, managing stress—that’s a big win, especially if it can also deliver just-in-time nudges and other tools to help us take the small steps that add up to big change . In partnership with Aetna and its data and scale, Apple may be able to help shift our overall culture to prioritize wellness and prevention.

Yeah, but wellness isn’t equivalent to health. What about people who are seriously ill?

Some argue that the Apple watch is impacting only the most peripheral of health topics—wellness, and that walking a few more steps doesn’t help with cancer or diabetes. Actually, though, I think it does. For one thing, prevention and management of most chronic conditions requires attention to the universally beneficial tasks of healthy living, often while juggling additional tasks including taking medications. For another, the Apple watch already goes beyond wellness, serving as a platform to connect devices such as glucose monitors to address specific health condition needs—and I imagine this trend will continue, particularly if the wearer can give it health record details via Aetna. The watch has already saved lives by detecting early signs of heart trouble.

Yeah, but Apple is only for the rich. What about everyone else?

It’s critical that everyone—especially the poorest and sickest people—benefit from health technologies that can boost health and healthcare. As I see it though, the fact that an Apple watch, which retails at about $350 for the latest model, is too expensive for many people isn’t in itself a problem. For one thing, Apple is a private company, not the government. There is nothing illegal or inherently immoral in creating a luxury product. In the bigger picture it is up to policy makers to figure out how to leverage such tools for everyone, but it’s not Apple’s responsibility. In addition, through their partnership, Aetna may help to bring Apple watches to an economically diverse audience by subsidizing or covering their cost entirely.

In the longer term, though, I think other tech companies will follow Apple’s lead in health to provide lower-cost options to for different demographic groups. The design features of today’s Louis Vuitton purse are clearly recognizable in next season’s knockoff, available in the streets of New York and Hong Kong for a fraction of the price. When the iPhone was introduced in 2017, only 6% of the population had smartphones; today, more than 80% of Americans do—and they’re not all provided by Apple.

Author’s statement of conflict of interest:  I am not employed by Aetna or Apple. While my participation in the event described was paid for by Aetna, I was not required or asked to write about the experience.

By KIP SULLIVAN, JD

• Is it ethical for health policy researchers to claim that a Medicare ACO reduced “spending” by 2 percent if the reduction was not statistically significant?
• Is it ethical for them to do so if they made no effort to measure the cost to the ACO of generating the alleged 2 percent savings nor the cost to Medicare of giving half the savings to the ACO?
• Does it matter that the researchers work for the flagship hospital within the ACO that was the subject of their study?
• Does it matter that the ACO and the flagship hospital are part of a huge hospital-clinic chain that claims its numerous acquisitions over the last quarter-century constitute not mere empire-building but rather “clinical integration” that will lower costs, and the paper lends credence to that argument? 
• Is it ethical for editors to publish such a paper? Is it ethical to do so with a title on the cover that shouts, “How one ACO bent the cost curve”?

These questions were raised by the publication of a paper  by John Hsu et al. about the Pioneer ACO run by Partners HealthCare System, a large Boston hospital-clinic chain, in the May 2017 edition of Health Affairs. Of the eight authors of the paper, all but two teach at Harvard Medical School and all but two are employed by Massachusetts General Hospital (MGH), Partners’ flagship hospital and Harvard’s largest teaching hospital. [1]

Partners has been on a buying and merger binge since it was co-founded by MGH and Brigham and Women’s Hospital in 1994, the year after merger fever broke out across the American health care system following the endorsement of HMOs and “managed competition” by candidate Bill Clinton late in 1992. Partners’ empire-building has been so aggressive it has provoked resistance from antitrust authorities and has probably contributed to the high cost of health care in Massachusetts. [2] 

In this essay I explore the ethical questions raised by Hsu et al.’s article.  I begin with a review of the article.

More bad news for ACOs, some good news for disease management

The paper I am examining is the third that Hsu et al. have published in Health Affairs about Partners’ Pioneer ACO, the second largest of the 32 ACOs that entered Medicare’s Pioneer ACO program in 2012. [3] I described Hsu et al.’s first two papers in an article I posted on THCB last May, Those papers were quite useful (they reported that approximately half of the ACO’s doctors and patients left the ACO over a three-year period).

Hsu et al.’s third paper reported expenditure data at two levels – at the level of Partners’ ACO and at the level of a disease management program within that ACO that enrolled only very sick people. The paper contained good news about the disease management program, a program the authors called the “care management program” (CMP), but bad news for the ACO.

The authors found that the CMP cut Medicare expenditures on “high risk” patients by a statistically significant 6 percent. The authors made no effort to determine what it cost Partners to run the CMP, so they drew no conclusions about the net impact the CMP had on total costs. This conclusion about Partners’ CMP confirms many other studies which found that it’s possible to reduce covered medical costs (usually by reducing hospital utilization) by raising the cost of other services that insurance companies typically don’t cover, typically services provided by nurses to patients with chronic illnesses.

However, Hsu et al. reported more bad news for ACOs. They found that Partners’ ACO cut Medicare’s costs by a statistically insignificant 2 percent. This outcome is consistent with CMS’s data on the performance of Medicare ACOs, as well as the extremely rare studies of total spending by private-sector ACOs (see my discussion of the Blue Cross Blue Shield of Massachusetts ACO here . The only papers seeming to contradict this bad news are two “studies” of simulated ACOs (see my discussion of studies by J. Michael McWilliams and David Nyweide et al. here ). We may infer from the literature that if ACO start-up and operating costs, including the costs of disease management programs, are taken into account, ACOs are raising total health spending.

However, in this third paper, Hsu et al. did not convey to their readers the impression I have just conveyed: Despite their insignificant results, they claimed Partners’ ACO is cutting costs. “Our major overall finding is that participating in an ACO and a care management program lowered utilization and spending,” they concluded (somehow managing to write a sentence with no agent). (p. 881)

Hsu et al. employed two tactics that lulled readers into thinking their data supported their claim that Partners’ ACO “lowered spending.” The first was to treat the statistically insignificant reduction in Medicare spending as if it were statistically significant. The second was to ignore the overhead costs incurred by CMS and Partners’ ACO, a problem that occurs so frequently I have proposed giving it a name – the “free-lunch syndrome.” I ignore for now a third questionable tactic: Rather than use the actual savings data reported by CMS for the Partners ACO, Hsu et al. simulated the impact of Partners’ ACO on Medicare costs. [4]

I examine each of the first two tactics in the following sections.

Questionable tactic No. 1: Celebrating statistically insignificant results

Hsu et al. reported that Partners’ ACO cut Medicare spending on beneficiaries attributed to the ACO by CMS during 2012 and 2013 by a statistically insignificant 2 percent. As the authors put it, “this association was not significantly different from no change” (p. 880). Yet the authors treated this 2 percent difference as if it were significant. Throughout the paper they claimed Partners’ ACO had lowered “Medicare spending.” They did so in the title (“Bending the spending curve….”), the abstract (“ACO participation had a modest effect on spending”), and in the text (see the quote above, as well as, “There were modest overall ACO spending reductions….” and, “This study provides some evidence of how one large … ACO appears to have achieved its stated savings….”). [5]

On May 1, Partners’ flagship hospital, Massachusetts General Hospital (where six of the eight authors are employed) aggravated these sins by issuing a press release about the paper that stated, “Today, researchers at Partners HealthCare published a study showing that Partners Pioneer ACO not only reduces spending growth, but does this by reducing avoidable hospitalizations for patients with elevated but modifiable risks.… The entire ACO population … reduced health care spending $14 per participant per month, a 2 percent decline.” (Note again the confusion caused by the effort to avoid identifying an agent.) It is true that Hsu et al. found that Partners’ CMP program reduced hospital use by a statistically significant amount. It is not true that Hsu et al. found that Partners’ ACO “reduces spending growth.”

Questionable tactic No. 2: Ignoring program costs

Even if the 2-percent savings had been statistically significant, the authors should have subtracted from the claimed savings the cost of the interventions that led to the savings. These costs fall into two categories: Those CMS incurred to run the Pioneer program and those Partners’ ACO incurred attempting to achieve savings. Not reporting these offsetting costs made it easier for Hsu et al. to mislead readers into accepting their statement that Partners’ ACO “bent the cost curve.”

The most obvious cost to CMS Hsu et al. should have subtracted was the share of the simulated savings CMS would have had to give to Partners had this been the real-world program. That share would have varied depending on how well Partners’ ACO scored on several dozen “quality measures,” but 50 percent is a reasonable estimate. Cutting CMS’s savings by 50 percent reduces the non-significant 2-percent savings to a non-significant 1 percent.

A less obvious cost to CMS is the cost CMS incurred to administer the Pioneer ACO program. Analysts routinely ignore those costs. A complete accounting of the net impact of the Pioneer ACO program on health care spending should include them.

Hsu et al. also ignored the start-up and maintenance costs Partners incurred to run its ACO and its CMP program. (I discuss these costs in more detail below and in footnote 8.)

Hsu and his co-authors in fact warned readers that they intended to ignore all “program costs” incurred by the ACO, CMS or any other entity, that is, all costs that didn’t require reimbursement by Medicare under Parts A, B or D. They didn’t say why. The only explanation they offered was, “To our knowledge, no other study of ACOs has included program costs in its analysis.” This is true. The vast majority of American health policy researchers think it’s totally appropriate to ignore program costs when analyzing the impact of ACOs. Moreover, they think that if their limited analysis shows the ACO cut Medicare’s gross spending it’s ok to state repeatedly the ACO “bent the cost curve” or “lowered spending.”

How much does the free lunch really cost?

I won’t comment further here on dubious tactic number 1 – treating non-significant results as significant. I’ll focus the remainder of this essay on a question raised by the second tactic: Is it possible Partners’ ACO and CMP program costs were so inconsequential Hsu et al. were justified in ignoring them?

We know woefully little about ACO start-up and operating costs even though the ACO fad is now entering its second decade. We have some ballpark estimates from the staff of the Medicare Payment Advisory Commission (MedPAC), and we have an evaluation of MGH’s CMP program done for CMS in 2010. Both suggest that the interventions Partners’ ACO deploys are very expensive relative to the meager savings Partners’ ACO and other Pioneer ACOs are achieving.

We know that Pioneer ACOs are cutting Medicare’s net spending by no more than a few tenths of a percent on average (and CMS’s MSSP ACOs are raising costs by a few tenths of a percent). According to MedPAC’s staff, ACOs incur costs equal to 1 to 2 percent of their ACO Medicare spending. [6] If we assume 1-to-2 percent is what Partners’ ACO spent to achieve the (statistically insignificant) 2-percent savings reported by Hsu et al., of which Partners would have kept 1 percent, that would mean the ACO would have broken even or lost 1 percent.

This conclusion is reinforced by an examination of the CMP program. It appears that that program costs at least as much to run as it saves Medicare.

According to Hsu et al., the CMP cut Medicare spending by a statistically significant 6 percent. They claimed in both their paper and in MGH’s May 1 press release that it was this 6-percent savings on a small fraction of the ACO’s total assigned population that explains the (non-significant) 2-percent ACO gross savings for Medicare (see the quote above from MGH’s press release).

The press release cited an evaluation of the CMP for CMS by RTI International published in 2010. (The CMP was the subject of a three-year CMS demonstration that began in August 2006.) In RTI’s evaluation, we discover that MGH told CMS its CMP program costs equaled 5 percent of Medicare spending on CMP enrollees. [7]

If CMP’s program costs were still 5 percent of Medicare spending during the 2012-2013 period examined by Hsu et al., that would mean the CMP cut net spending on its enrollees by only 1 percent (the 6 percent reduction reported by Hsu et al. minus the 5 percent program costs). What happens when this 1-percent savings on a few thousand CMP enrollees is spread out over the 50,000 or 60,000 Medicare beneficiaries assigned to Partners ACO? I suspect the savings disappear or turn into losses. In any event, I have made my point: The CMP program costs are not trivial relative to the savings the CMP achieves. Hsu et al. should have investigated those costs, and until they did they should have refrained from claiming that either the CMP or the ACO “lowered spending.”

But MGH’s statement to RTI that its CMP program costs equalled just 5 percent of Medicare spending may have been an underestimate. (RTI’s report contained no data supporting this claim.) In a 2012 report  by the Congressional Budget Office on 34 disease management demonstrations conducted by CMS, including MGH’s CMP demo, the CBO concluded, “On average, the 34 … programs had little or no effect on hospital admissions or regular Medicare expenditures…. To offset the fees they charged CMS, the programs would have had to reduce regular Medicare expenditures by an average of 11 percent.” (pp. 11-12)

That statement that CMS paid out fees averaging 11 percent of Medicare expenditures suggests that the 5-percent-of-expenditures fee MGH negotiated with CMS was not enough to cover MGH’s actual costs of operating its disease management program. Obviously, if the CMP’s real program costs are closer to the average claimed by the other participants in CMS’s disease management demos, Partners’ CMP lost a lot of money during 2012-2013, the period Hsu et al. studied. If, for example, the real program costs for the CMP were 10 percent, the CMP would have lost money (10 percent minus the 6 percent Hsu et al. reported). [8]

Making sense of Hsu et al’s and Partners’ behavior

The data in Hsu et al.’ paper is useful even if it is incomplete. It contributes to a growing body of evidence indicating that ACOs cannot cut total spending, in part because ACOs cannot focus. They are measured on their ability to cut the cost of an entire population by unspecified means rather than on their ability to cut the cost of a clearly defined slice of their sickest “attributees” by clearly defined methods.

My criticism of Hsu et al. is their misuse of their data. They implied statistically insignificant results were significant, and by stating over and over that Partners’ ACO cut “spending” they misled readers into thinking they had measured total costs when they hadn’t. 

We badly need research on the cultural and financial incentives that induce health policy analysts to misuse data and to avoid studying issues (such as the start-up and maintenance cost of ACOs) that risk contradicting reigning managed care doctrine. This problem occurs at epidemic levels. Let me suggest two incentives worth further study.

First, Hsu et al. work for one of the nation’s pre-eminent hospital-clinic chains that has long acted like a cartel, and like all cartels, it stands to benefit from research that seems to prove that the cartel is doing the Lord’s work (it is “clinically integrating” all parts of the cartel for the betterment of humanity, we are told) and, therefore, anti-trust authorities should not object to the cartel’s next acquisition. The Department of Justice, state attorneys general and other anti-trust enforcers must weigh the benefits to society of mergers against the damage mergers may do to competition. Partners’ lawyers will no doubt brandish the paper by Hsu et al. the next time an acquisition by Partners is challenged on anti-trust grounds.

The second incentive worth study falls into the category of incentives created by culture or the expectations of one’s peers. Hsu et al. work within a culture that arose in the 1970s, roughly simultaneously with the rise of HMOs and the establishment of health services research as a separate discipline. One of the norms of that culture is to treat the managed care diagnosis (overuse due to the fee-for-service method) and the managed care solution (shifting risk to doctors and micromanaging them) as articles of faith, not hypotheses to be tested. We need research on how this casual attitude toward a basic rule of science became so widespread among people with degrees in the medical and social sciences. [9]

[1] According to Massachusetts General Hospital’s website , “nearly all” of MGH’s physicians are on the Harvard Medical School faculty.

[2] Massachusetts had the nation’s second-most expensive per capita health care cost as of 2014 according to CMS’s latest report on state-level spending.

[3] The five-year Pioneer ACO program ended in 2016.

[4] I have criticized the conflation of simulated with real ACO results by the authors of two other papers – one by J. Michael McWilliams (also at Harvard) and the other by David Nyweide et al. (employed by CMS). I have chosen not to discuss Hsu et al.’s decision to study a simulated version of Partners’ ACO in this article because the version Hsu et al. simulated closely resembled the real version. Hsu et al. did not use a different experimental group from the one CMS used (which was the case in the McWilliams and Nyweide studies), and the method Hsu et al. used to create a control group was less vulnerable to distortion by differences in patient health and income than those used by McWilliams and Nyweide et al.

[5] Hsu et al. applied a double standard to statistically insignificant results. While they repeatedly celebrated the non-significant 2-percent reduction in gross Medicare costs achieved by Partners’ ACO, they did not celebrate a statistically insignificant 2- or 3-percent increase in hospitalizations among Medicare beneficiaries assigned to the ACO.  In fact, Hsu et al. didn’t even report the percent by which hospitalization rates increased; I had to eyeball a graph in Exhibit 3 to make the 2-to-3-percent estimate. Instead, Hsu et al. merely noted, “There was no significant association between overall ACO participation and hospitalization rates” (p. 879). After that, they never came back to the subject.

[6 ] At the September 11, 2014 MedPAC meeting, commissioner David Nerenz asked MedPAC staffer Jeff Stensland if “we know anything about” ACO “overhead.” Stensland replied, “[P]eople we talk to and the data we have seen, it looks like maybe 1 to 2 percent of your spend, that that’s what they’re spending on their ACO to operate it….” (p. 133 of the transcript of the meeting). Stensland also reported, “[I]f you averaged everybody [that is, all ACOs] … the share of savings … that they get is going to be less than their administrative costs of being in it….” (p. 144)

[7] I calculated the CMP’s program cost to be 5 percent of Medicare expenditures on CMP participants based on data reported in the RTI evaluation of the CMP. RTI stated, “MGH negotiated a [per enrollee per month] management fee of $120 for the original and refresh intervention groups through the duration of the demonstration.” (p. 4). RTI also reported that the CMP cut Medicare’s costs by $288 “per beneficiary per month” (PBPM) and that this constituted 12.1 percent of PBPM Medicare spending. (p. 14) This allowed me to determine that the $120 monthly fee thus amounted to 5 percent of Medicare spending on the CMP patients. (The $120 fee paid by Medicare is 41.7 percent of $288, and 41.7 percent of 12.1 percent is 5.0 percent.)

[8] I encourage readers to peruse RTI’s evaluation of the CMP to get a clearer view of the complexity and expense of Partners’ CMP program. To give you just a taste of the resources Partners is investing now for the 4,000 CMP enrollees examined by Hsu et al., consider these excerpts from RTI’s report describing elements of the program for the 2,000 CMP enrollees during 2006-2009:

• “Eleven nurse case managers [each of whom worked with about 200 patients] who received guidance from the program leadership and support from the project manager, an administrative assistant, and a community resources specialist” (p. 7);
• “a social worker to assess the mental health needs of CMP participants” (p. 6);
• “a mental health team director, clinical social worker, two psychiatric social workers, and a forensic clinical specialist (M.D./J.D.), who follows highly complex patients with issues such as legal issues, guardianship and substance abuse” (p. 10);
• “a pharmacist to review the appropriateness of medication regimens” (p. 6);
• “home delivery of medications five days per week” (p. 7);
• “a nurse who specialized in end-of-life-care issues” (p. 7);
• “a patient financial counselor who provided support for all insurance related issues” (p. 7);
• “The clinical team leader provided oversight and supervision of case managers” (p. 8);
• “The medical director provided oversight and day to day management of MGH’s CMP….” (p. 8);
• “MGH developed a series of clinical dashboards using data from the MGH electronic medical record …, claims data, and its enrollment tracking database” (p. 8);
• “MGH provided [200] physicians with a $150 financial incentive per patient per year to help cover the cost of physician time for [CMP-related] activities” (p. 8);
• “a designated case manager position to work specifically on post discharge assessments to enhance transitional care monitoring” (p. 9);“ and
• “a data analytics team to develop and strengthen program’s reporting capabilities” (p. 10).

In addition to all these goods and services, a true accounting of the cost of the CMP would include numerous housing, transportation and other “support services” and “community services” (p. 6) that RTI described only vaguely. The cost of these additional “non-clinical” services obviously show up on someone else’s books but might well have a positive impact on medical costs.

We must remember that all these goods and services were provided to patients who cost Medicare about three times the cost of an average Medicare beneficiary. Nevertheless, this long list of goods and services clearly cost a pretty penny, and should have received serious attention from Hsu et al. before they announced to the world that Partners’ ACO “bent the cost curve” and it was their CMP that did it.

[9] On July 7, 2017 I sent an email to Dr. John Hsu, the lead author of the Health Affairs paper, at the address listed in the paper. I asked him if I was correct in interpreting the 2-percent savings as non-significant and why he treated those results as significant. I also asked whether he knows what Partners’ ACO and CMP overhead costs are. I have not received a reply as of August 24, 2017.

By MARTIN A. SAMUELS

I posted an essay on The Health Care Blog (entitled The Prevention of Physician Burnout: A Nine Step Program. Here is an example of how this works. Recall the wonderful children’s book by Leo Lionni, Frederick. Let me remind you of it.

A family of mice begins to store away food and supplies for the long winter ahead.  Most are practical and gather corn, grains, and straw. One of the mice, Frederick, instead collects rays of sun, colors of the rainbow, and words to remember.  When winter arrives the family begins to use up their practical supplies.  They become irritable and angry and don’t have anything to talk about.  In other words, they become burned out. Frederick shares his stores of sun rays, colors, and a poem which enlivens their spirits and saves their lives.

Ever since reading this story to my own children I have used Frederick as a verb. When a wonderful event occurs, I try to remember to Frederick it…….and save it for a tough day.

About a month ago, a 20 year old woman, previously completely healthy, began to experience twitching of her left hand. Over several days this involuntary jerking worsened and spread to involve the left side of the face as well. Her parents told us that her personality had dramatically changed in that she lost her usual ebullient nature and became almost inert and unreactive. She came to us where it appeared that she was suffering from epilepsia partialis continua (continuous partial seizures).

The MRI was very abnormal in that it showed a very bright signal on T2 weighted images in the basal ganglia bilaterally. An EEG was abnormal in that it was quite slow, but there were no definite cortical correlates to the jerking. Her spinal fluid was acellular under normal pressure with normal protein and glucose measurements. We were very concerned that she was suffering from a form of encephalitis, either viral or autoimmune and, if autoimmune, whether it could be paraneoplastic or benign.

It seemed that an infectious encephalitis was very unlikely given the normal spinal fluid and the absence of systemic signs such as fever. A broad batter of auto-antibodies, known to cause various autoimmune encephalitides were ordered, all of which were ultimately negative. She underwent a whole body PET scan and pelvic ultrasound to exclude a malignancy or ovarian teratoma. Both were normal. A definite diagnosis could not be made, so it was decided to treat her empirically.

First a brief course of high dose intravenous steroids (methylprednisolone) was tried with no obvious improvement. The was then given a course if intravenous immunoglobulin. On the day of the third infusion, her family said that she reacted more normally when friends visited her, but her movements seemed unchanged. A trial of intravenous lorazepam was given which stopped the movements promptly but left her unacceptably drowsy. So levatiracetam, an anti-epileptic drug was started. It also had a negative effect on her level of consciousness, so it was replaced with oxcarbazepine, a newer anti-epileptic drug related chemically to carbamazepine. Having improved slightly, she was discharged with follow up planned in a month.

Yesterday, I saw her in my office. She was bright and happy. She and her family said she was now greater than 90% back to normal and was continuing to improve day by day. Her exam showed only the slightest irregular twitching of the left fingers, but this barely affected her ability to use the hand. She is planning on going back to college right after Labor Day. She and her family left a box of cookies that they asked me to give to the doctors and nurses who had helped in her care while in the hospital and they gave me a handwritten note which said:

To Jane Doe’s team of Doctors:

Mere words simply cannot express how grateful we are for the care you gave and the compassion you showed to our daughter during her week stay at Brigham and Women’s. Truly, how do you thank someone for giving you back your child?

Each one of you was an intrinsic link in a chain of care, that got her to where she is today. If any of those links had been missing, she could be in a much different place right now. You may feel like you were just doing your job, but to us, you are all angels on earth.

Thank you not only for the care you gave to her, but for the patience and compassion you showed to us during a most difficult time. Because of all of you, she will be starting her junior year at college on time, and as far as we can see, participating fully (albeit under some very watchful eyes).

We hope that you all are blessed with good health now and always, because we have learned through this experience that without your health, nothing else really matters.

Keep working miracles every day! With our love and deepest gratitude,

The Doe Family.

Frederick that one

BY JEFF GOLDSMITH

On July 17 of this year, I journeyed from Charlottesville Virginia, where I live, to Seattle to have my cervical spine rebuilt at Virginia Mason Medical Center, whose Neuroscience Institute has a national reputation for telling patients they don’t need surgery. It was my fifth complex surgical episode in 29 months, after more than fifty years of great health.  My patient experience has been wrenching, and it made me question yet again the conventional wisdom about doctors and patients that dominates much of our current health policy debate.

None of these interventions was remotely elective: head and neck cancer, nerve grafting surgery to restore use of my right hand and a musculoskeletal trifecta- two hip replacements and cervical spine surgery.   All five surgeries were successful, and I have fully recovered and returned to my busy life. The technical quality of the surgical care was flawless. Only three of the people who touched me were over forty, and three of the procedures were performed by women.   It was stirring to watch and be helped by the remarkable teams and the teamwork they displayed.

In retrospect, it was dizzying how fast the acute phase of these interventions was over. I walked on my new hips an hour after waking up, and spent only three nights in the hospital after my spine was rebuilt! Most of the actual recovery, and large amount of the clinical risk, actually took place out of the hospital, placing a premium on preparing me and my family for the transition.

No analysis of my prior health history or my genome would have predicted or helped prevent the past 29 months (sorry, Watson!). Absent these procedures, I would either be dead or confined to my back porch in a wheelchair.    I shudder to think what would have happened to me if I was seven years younger and, like millions of older Americans pre-Medicare, lacked health insurance

My experience brought me face to face with the uselessness of the twin narratives that have seized control of our national dialog on healthcare. Most health policy in the US over the past forty years has been driven by two warring economic theories that blame our health cost problem on moral failure by patients or by physicians and the care system.

Conservatives blame patients both for their own poor health and a lack of thoughtfulness of healthcare use, resulting in higher costs. Much of the recent failed Republican ObamaCare Repeal and Replace legislation was aimed, rhetorically at least, at “empowering” patients to be more “responsible consumers”. Progressives blame physicians and a mercantile care system for driving up costs by doing things to patients that aren’t needed to drive up their incomes. This led to an explosion of arcane new payment schemes and an avalanche of new physician and hospital reporting requirements during the Obama years.

As a patient, I found both of the conservative and progressive narratives not only not descriptive of what I experienced, but also demeaning to me and to my care teams. On my part, I did everything conservative policy analysts would have insisted that I do. I am a gym rat who works out five days a week and am in better physical condition than most people twenty years my junior. I also exhausted the complementary medicine and pain control alternatives to surgery and only turned to acute intervention when the pain or threat to my life or functionality became untenable.

Neither did I evade economic responsibility for the cost of my care.   When I turned 65, I opted out of the antiquated regular Medicare program and enrolled in an HMO-style Medicare Advantage Plan. I had a whole hide worth of “skin in the game”: a $6700 front end out of pocket liability. I also tried to find information on provider, government and consumer websites that would have enabled me to “shop” for care. I knew where to look, and found nothing online or anywhere else that made my decisions easier or more rational. I had to rely on my personal relationships from forty years of working in the health field to find the right people to help me.

As far as the progressive narrative about income maximizing clinicians and hospitals, as far as I could tell, the people I trusted to take care of me did not spend thirty seconds thinking about their incomes or how to pad them. They were focused with laser intensity on helping me, and redeeming my trust in them. It is tragic how much of their time has been diverted from direct care into sitting in front of a computer elaborately documenting what they did to me. Less than half of the time of my nursing staffs was devoted to direct patient care; you could feel the computer beckoning to them virtually non-stop during their shifts and even after.

It is time for policymakers to treat us patients with more respect and our caregivers with greater thoughtfulness. Most public health experts believe that the contribution that patient and physician behavior make to health costs is dwarfed by the health effects of “social determinants” like poverty, homelessness, poor nutrition, food insecurity, broken homes, and crime, and the onslaught of chronic illnesses like arthritis and degenerative diseases of the nervous system which are inevitable correlates of aging.

By failing to confront and effectively manage the declining functionality of our own bodies as we age, we deny the inevitable and unavoidable. And by blaming doctors and patients for our health cost problems, we evade responsibility for the crumbling society that damages our citizens and drives many needlessly into an expensive care system.

This does not mean that there are not mercantile corners of our health system where money matters, and influences care decisions.  We can minimize the damage they do with better fraud and abuse enforcement and by repricing (e.g. reducing the fees for) grossly overpriced services to eliminate perverse incentives. It also doesn’t mean that people cannot take better care of themselves.

But to pretend that we can fix what ails our health system by finding the perfect economic incentives to animate doctors and patients is not only a waste of scarce policy and political bandwidth. It is fundamentally insulting to those who use the health system and those who help us. We patients are not greedy “consumers” trying to maximize our health benefit; rather we are frightened people seeking to regain control over our lives. Our caregivers are there because they want to help us do that.

Jeff Goldsmith is President of Health Futures, a strategy consultancy and Associate Professor, Public Health Sciences, University of Virginia.

Value-based healthcare initiatives are great, but on their own won’t be enough to bend the healthcare cost curve.

The focus must move—and move quickly—from treating people who are sick to helping them get and stay healthy. The only way that’s going to happen is by getting patients and populations motivated to do the right things early instead of desperate things late.

The New Consumer World of Tools and Health Models
Health plans, in particular, have shifted responsibility onto consumers.

Kyle Rolfing, President and Co-Founder of Bright Health, and Jackie Auba, Vice President of Cigna’s Customer Adoption and Personalization Strategy, will share this shift during the The New Consumer World of Tools and Health Models panel at the 11th Annual Health 2.0 Fall Conference.

At this session you’ll also check out a demo from health optimization platform Welltok. Through population health management we are learning more about how to create wellness strategies and to stratify patient populations based on their conditions and adjust for nuances in age, race, diagnostic groups, and the like.

This type of information can inform care management and care coordination program designs that address cultural and educational issues as well as medical issues, showing patients what they need to do and dedicating resources to support them in those efforts.

Meet Consumers Where They Are
Interactions with the healthcare system are complex and critical, but the vast majority of our health is defined by our time away from traditional healthcare settings. As result, the market is booming with new technologies that empower consumers to seamlessly track, understand, and improve their health.

Given that there are 2.6 billion smartphone subscriptions worldwide today, and that by 2020 that number is expected to more than double to 6.1 billion, enabling communication via smartphone can pay multiple dividends.

At the 11th Annual Health 2.0 Fall Conference, we’ll take a closer look at Google Play to understand how the company that already knows so much about us is working to help us with our health. We’ll also see a demo of Curious from Linda Avey, CEO and Co-Founder of Precise.ly. Curious is not just another app. It helps consumers track data and chart experiences with sleep, autism and ME/CFS.

Register today for the Annual Fall Conference before rates go up after September 4th.

By BRIAN JOONDEPH, MD

Obamacare repeal and replace is going nowhere, despite seven years of promises by Republican members of Congress. For the foreseeable future, it will remain the law of the land, along with rising insurance premiums and deductibles and fewer plans to choose from. It’s worth remembering the next time someone asks you for money to support Republican incumbents.

What if the airline industry could light the runway toward fixing one of the more onerous aspects of Obamacare? United Airlines has done just that. I don’t mean dragging patients out of hospitals and doctors’ offices as United did earlier this year on an airplane—a physician no less. Instead, United now offers a lower cost option for air travel. Let’s apply it to healthcare.

United recently began offering “basic economy” fares, a lower cost option, compared to its “standard economy” fare. Suppose healthcare insurance companies did the same.

Obamacare requires that all insurance plans cover 10 “essential benefits.” Some of these are common sense, including outpatient, hospital and emergency care. Others are beneficial to only some people—pregnancy, maternity and newborn care, mental health and substance-abuse treatment, and pediatric services.

A 60-year-old man doesn’t need or want pregnancy coverage. A middle-aged couple with adult children can pass on pediatric coverage. A teetotaler won’t want alcohol-rehab insurance. But all are forced to purchase this insurance they neither want nor need. That’s like making Coloradans purchase hurricane insurance.   

United recognized that not all its passengers want the benefits that go along with the higher-standard economy fare. Instead, they offer travelers the option of a lower cost fare with fewer perks. For example, standard fares earn miles toward premier status on United, whereas basic fares do not. For frequent flyers looking to achieve higher premier status, this may be important. Not so for infrequent travelers or those who typically fly another airline. Why make them pay for it?

Another difference is that the basic fare doesn’t allow passengers to choose their seats or sit with their travel companions, unlike the standard fare. For a short flight, if you don’t care where you sit and are OK with your travel companion sitting in a different row, why not save your money?

The idea is that United is giving passengers a choice, offering an alternative to their more expensive fares, the airline equivalent of “essential benefits.” If passengers don’t want or need expensive perks, why not let them opt out and pay less?

An amendment along these lines was proposed by Sen. Ted Cruz during the recent Senate debate on Obamacare repeal and replace. His idea was that insurance companies could sell pared-down, less expensive plans, as long as they also sold at least one plan that provided all the benefits.

For United, that would mean they could sell basic economy fares if they still sold standard economy, economy-plus and first-class tickets. Common sense.

How absurd that the government should tell a business what it can and cannot sell, forcing consumers to purchase what the government commands. United, instead, is offering a discounted fare with fewer benefits that is better able to meet the needs and pocketbooks of many of its travelers.

This could be a stand-alone piece of legislation. Perhaps along with a law requiring Congress and their staffs to purchase Obamacare plans. A simple way to ameliorate one of the more bothersome aspects of Obamacare. Not the repeal and replace we were promised, but at least some relief for Americans struggling to afford ever more costly Obamacare insurance.

By ROBERT McNUTT, MD

Is coffee good for you?

A recent headline suggested that people who drink coffee live longer. Sounds great to me. I drink a lot of coffee, so maybe I will be immortal. But, wait, another report links coffee to cancer. Dang.
​
Estrogens were once touted as a life saving elixir for women of elegant ages, until these hormone supplements were linked to increased cancer risk. Wine will either add to your life expectancy or increase chances of breast cancer. If you are married and have cancer, your outcome is better; you live longer (and can drink more wine). Eggs either kill you (dropping the value of egg futures) or do not hurt you at all, (prompting a financial rebound in chicken-by-product).

Each study and report alluded to above is erroneous.

Indeed, these claims are what I call “fake” medical news. My definition: if a medical report is either wrong or not provable, it is fake.

When Is Medical News Fake?

Fake news is a hotly debated topic regarding national political reporting. There is a reason I am extending this concept to reports of wrong or not provable medical information: it is imperative that you begin to look askance at most of the medical information presented to you in news reports.

If you Google “how to tell fake news” you will find enough reading material for the rest of your life and will also find, likely, that some of those articles are fake. Some say fake news is defined by intent to deceive; but this is not sufficient in my view. Some industry folks will tout a study on coffee or wine, for example, to boost sales of each; their intent is no less reprehensible than bald, bare, bold-face lying. Time to call a spade a spade.

But, how do we know what medical news is fake? That is a crucial question. Those worried about fake political news have offered suggestions for identifying “fakeness.” Most of this advice focuses on validating sources, verifying claims, determining if the information actually comes from expert sources, discerning if quotes are legitimate or lifted out of context, and researching origins of any visual images to see if they’ve been doctored.

These “rules” from the political news world are not helpful, however, if you are reading medical news. Some of the most faulty and not provable information comes from legitimate medical journal sources or academic centers, include quotes from those excited about their wrong and not provable “research” findings, and provide distinctive, original pictures of their data.

Three Rules For Uncovering Fake Medical News

To uncover fake medical news, we need better rules. Here are three:

1. Is the item being reported measurable? (Measurable means that the item is quantifiable and will be measured the same by all, and that the finding is reproducible).
2. What additional human traits or actions may cloud or confound the relationship between the item being studied and the outcome being touted?
3. How was the study done?

Let’s try out these rules on the issue of whether coffee is good for us or not:

1. Is the item and outcome measurable?

What is “coffee drinking”? Is it drinking coffee black, or with cream and sugar? How is coffee imbibed; at one sitting, over the entire day, gulped or sipped? Is it Folgers in a Can or Starbucks? How much is a lot of drinking? Was the amount of coffee consumed observed by researchers or self-reported?

Science is about measurement, and if you can’t define a measure, you don’t have science.

2. What additional human traits or actions may cloud or confound the relationship between coffee consumption and life expectancy?

Who is rich enough to drink coffee these days? Is coffee part of a better diet? Was the entire diet/drinking history of each person known, besides their coffee consumption, and recorded? Did the imbibers ride their bikes to the coffee shop, or drink it at home? Are they new to drinking coffee, or have they been drinking all their life?

People vary in many ways; a report isolating one thing from many things about an individual is sure-fire fake medical news.

3.  How was the study done?

Coffee consumption was not randomized to users. The study was an observational comparison (people who drank or did not drink were observed and not assigned to being a coffee drinker or not).

Observational comparison studies, rather than randomized studies, are nearly always fake, as observational studies cannot prove an independent contribution of the item being studied to the outcome of interest. In other words, if they happen to be true, we can’t prove it. Hence, they are fake.

You can repeat these three steps every time you hear a medical report. Estrogens appeared helpful, for example, because the women who took them were healthier than average (confounded; second rule). The same is true about being married and cancer survival; married people are healthier and in better social-economic conditions. There is no proof that wine or eggs do anything to improve or harm our health, as all information on wine and egg consumption and their health benefits comes from observational comparison studies, not randomized scientific experiments (third rule).

Bottom line: if any of the three rules identifies a problem, you are reading fake medical news. I find that the first rule—is it measurable—busts many medical news reports.

I am being tough on medical news. I don’t apologize. Your care is too important to be left to the chance of un-measurable, confounded and poorly studied information (Rules 1, 2 and 3).

If I were forced to offer a recommendation for your medical reading, it would be that you should not read or watch any medical news. Instead, you should partner with your physician when you are ill and focus on knowing the best information for your specific medical choices. That is how you will learn and how you will more likely get the best medical advice.

By LYGEIA RICCIARDI

It was an invitation too intriguing to refuse: fly to LA to participate in a “top-secret mission” related to digital health. Instructions? Bring workout clothes. Don’t disclose your location. “We can’t say much. Just enough for you to quickly pack your bags, fly to California and participate in an exclusive Apple Watch from Aetna event – all expenses paid.” Generally, I’d file this type of message in the junk mail folder, but knowing that Apple takes secrecy seriously, I did some background sleuthing and decided it looked legit.

The mystery unfolded last week as I stepped into a black car at LAX with a secretive driver who joked that I and his other two passengers (who had received similar invites) would have to cover our faces as we drove through town. (Yikes!) When we arrived at a hip “concept” hotel I felt more at ease, and relaxed into enjoying the so-called mission with a glass of wine and some discussion of trends in the digital health industry. Over the course of a couple of days I was fortunate to join a group of new (and some old) friends to exchange ideas, take a challenging hike to the peak of Runyon Canyon Park, interact with Apple and Aetna execs, try out some new technologies, and get a glimpse of what both Aetna and Apple are envisioning for the future of digital health. I was assigned to one of several teams named after famous movies (in keeping with the Tinseltown theme) a personalized agenda, and some critical tools for the modern adventurer, including a bandana, water bottles, a phone charger, and, naturally, a selfie stick.

For about a year Aetna has used the Apple watch as part of an integrated wellness program available to its 50 thousand employees and those of several partner organizations it insures, such as Hartford HealthCare, which was represented among the participants in the mystery mission. Both companies are poised to expand the program.

Why all the secrecy? For Apple, it’s par for the course (and mission participants still can’t disclose all the details of what Apple shared), but this event was primarily arranged by Aetna for its own employees and a few key partners. Most of the 25 or so participants were staff from divisions throughout Aetna who had contributed to its partnership with Apple to date—some by inspiring others. For example, an Aetna employee named Nora lost more than 100 pounds in a year with support from the program. A handful of Aetna outsiders/digital health insiders were also included in the mission order to provide diverse perspectives and help generate new ideas.

In my opinion (though truthfully it remains a bit of a mystery) the top-secret approach was intended to enhance the fun factor for participants—and it worked. The experience was exciting, playful, and edgy, with a generous sprinkle of Hollywood glitter. If Aetna and Apple can harness that kind of energy to motivate people toward better health, more power to them. While I don’t imagine Aetna and its partners will be rewarding large numbers of people with glitzy Californian adventures comparable to this one, the tone and content of the so-called mission shows that they are thinking outside of the proverbial box. Just as the Apple watch takes health and healthcare outside of the hospital and onto your wrist, Aetna is taking traditional workplace wellness programs well beyond the walls of the office.

Stay tuned for further thoughts on the Aetna Apple partnership and its implications for digital health.

Lygeia Ricciardi is President of Clear Voice Consulting, LLC. www.lygeia.com @Lygeia

Author’s statement of conflict of interest:  I am not employed by Aetna or Apple. While my participation in the event described was paid for by Aetna, I was not required or asked to write about her experience.

• Provider Symposium: Exchange of ideas between the best minds from leading health care systems in an effort to change the face of health care as we know it.
• The Evolution of Care Delivery Session: Top innovators from care delivery platforms address how they’re innovating for diabetes, oncology and more.
• The New Consumer World of Tools and Health Models Session: From the fast-evolving world of consumer genomics to the latest in wearables, we’ll feature exciting new technologies.

• MarketConnect: A live matchmaking event designed to accelerate the health tech buying and selling process by curating meetings between pre-qualified healthcare executives and innovators.
• Exhibit Hall: Gain access to 90+ exhibitors, including Startup Alley, is the premier gathering of innovative companies and individuals. The exhibit floor is also home to MarketConnect Live.
• Developer Day: Expect your day to be filled with strong technical sessions in relation to interoperability and user testing as well as opportunities to network from others in the industry.
• 2 CEOs and a President Session: Three top health tech executives sit down for separate intimate interviews with a journalist. They will be dishing on both their personal and company journeys.

• Investor Breakfast: Bringing together leaders in the Health 2.0 investment community and our innovative startup network for an exclusive breakfast meeting.
• Investing in Health 2.0 Technologies: Panel experts will address what’s in store for the rest of the year and predict the next big bets in Silicon Valley and beyond.
• Launch!: Ten brand new companies unveil their products for the very first time and the audience votes on the winner!
• Traction!: Annual startup pitch competition that recruits companies ready for Series A in the $2-12M range. Teams will compete in two tracks, consumer-facing, and professional facing technologies.

Click here to register for the Annual Fall Conference! Prices increase after September 4th!

By ADRIAN GROPPER, MD

On July 24, the new administration kicked off their version of interoperability work with a public meeting of the incumbent trust brokers. They invited the usual suspects Carequality, CARIN Alliance, CommonWell, Digital Bridge, DirectTrust, eHealth Exchange, NATE, and SHIEC with the goal of driving for an understanding of how these groups will work with each other to solve information blocking and longitudinal health records as mandated by the 21st Century Cures Act.

Of the 8 would-be trust brokers, some go back to 2008 but only one is contemporary to the 21stCC act: The CARIN Alliance. The growing list of trust brokers over our decade of digital health tracks with the growing frustration of physicians, patients, and Congress over information blocking, but is there causation beyond just correlation?

A recent talk by ONC’s Don Rucker reports:

One way to get data to move is open APIs, which the 21st Century Cures Act mandates by tasking EHR vendors to open up patient data “without special effort, through the use of application programming interfaces.”

Rucker emphasized the distinction—without quite naming what it is—between open APIs for vendors and open APIs for providers. “We’re hard at work at defining those,” he said. One difference is how the APIs are implemented: Vendors must allow for the APIs technologically, in their products, and providers must actually take advantage of the APIs.

Trust brokers on the health information highway are like the checkpoints of militias in a war zone. What gets through is limited in scope to the lowest common denominator and limited in distance to the path that crosses the fewest boundaries.

The 8 trust brokers did not arise by popular demand of the physicians and patients. Before the era of big EHR vendors for big hospitals, information flowed among physicians and patients over mail, fax, and phone using open and public interfaces and without the “added value” of trust brokers. Faxes are free, universal, and there’s no blocking on the basis of “trust”. When faxes fail, it’s typically obvious, and coupled with a phone call, reliability is high. The current situation is worse for patients as the new digital alternatives add confusion because they vary greatly from provider to provider and add frustration by being unpredictable and unreliable.

It’s hard to put a toll booth in a forest. But as the health information highway became paved (with massive taxpayer subsidy), a growing list of rent-seeking intermediaries have seized the opportunity to put a checkpoint and associated toll booth where none existed before. Hindsight is always 20/20 but the massively bipartisan 21stCC (the Act passed with 392 votes in the House and 95 votes in the Senate) gives the new administration’s ONC the opportunity to begin to take down the checkpoints.

One way to take down the trust broker’s checkpoints is called patient-directed exchange. (The word patient is preferable to consumer because patients have significant legal rights beyond mere consumers and because clinicians have a relationship with us as patients, not as consumers.) Under HIPAA, Meaningful Use Stage 3, and ONC’s API Task Force recommendations, patients get a free pass down the paved health information highway. The pass is literally free in that patients, unlike providers, cannot be charged for sending information down the new digital highway to anyone they specify. It’s as if the toll booths apply only to trucks and private cars are free. Could patient-directed exchange spell doom for trust brokers by giving patients a pass on the highway we already paid-for with taxes?

Here’s where CARIN comes in. An unaccountable and unpublished list of members gets together as an “alliance” to develop yet another set of trust rules as new potholes in the information highway. These rules don’t directly create a checkpoint but they damage the road enough to add costly maintenance to patient-directed exchange. Part of this maintenance cost is to have alliance process closed to non-members. This practice distinguishes CARIN from standards groups and other private industry collaborations that are allowed to coordinate without running afoul of antitrust law.

As the API Task Force concluded, the law is clear that “trust” and “trust framework” do not apply to patient-directed exchange. Epic, holder of medical records for 54% of the US population, provides a leading example of this under their Open.Epic API initiative. More than 30 hospitals using their most recent software are already listed on the Open.Epic website. One of them happens to have records for my 91 y/o mom and, as her proxy, I had a password to that major hospital’s patient portal for many years. After a 30-second online verification of my own name, I was able to use that portal password to access the hospital’s FHIR API and send live EHR information to a new app without any trust framework or other information blocking interference. This is not a fluke. I checked with the hospital’s CIO after the fact.

CARIN’s claim to “Consumer-Directed Exchange” is just the latest attempt to slow-walk and confuse interoperability. Trust frameworks do not apply to patient-directed exchange. Elimination of the trust framework by Open.Epic is only the critical first step in implementing the “without special effort” clause in 21stCC. The HEART workgroup, co-chaired by ONC, recently issued the first specifications for how to improve the patient experience of interoperability, including standards for automated app registration and a refresh capability to allow the patient to determine how long it is before they are asked for their portal password again. ONC should hail the Open.Epic demonstration as an example of making patients first-class citizens in control of our own data and a first step toward a new approach to interoperability based on patient rights.

The public comment period for the Trusted Exchange Framework and Common Agreement will end on ­­­­­­­­­August 25, 2017. A version of this post will introduce the specific comments of Patient Privacy Rights. If you care about the promise of digital health and would like make longitudinal health records a reality, please consider submitting your comments as well.