Earlier this month, I returned from a weekend of hiking in the White Mountains, just beyond the boundaries of cell reception and Wi-Fi availability, to learn that Jess Jacobs passed away. She was only 29.
Jess suffered from two rare conditions – postural orthostatic tachycardia syndrome, an autonomic disorder, and Ehlers-Danlos Syndrome, a hereditary disease of connective tissue. Given that combination of conditions, she’d been dubbed a unicorn, a rare and beautiful animal.
Like everyone with multiple chronic conditions, Jess was more than just a patient. In particular, she was an accomplished healthcare professional. Jess worked for Aetna’s Innovation Lab and, before that, HHS. According to MedCity News, she led the marketing campaign for Text4Baby, arguably healthcare’s gold standard for patient engagement success.
Many in the healthcare IT community knew Jess better than I did and have honored her appropriately. Close friends Ted Eytan, Carly Medosch, and Whitney Zatzkin penned the most heartfelt remembrances, while the #UnicornJess Twitter hashtag captures her spirit and promises to improve the patient experience on her behalf.
The saddest part is that, based on Jess’ experience as a patient, that won’t take much work. Even as an insider – as someone who knew both personally and professionally the inner workings of arguably the most bloated, bureaucratic, inefficient, and wasteful system of any kind in the world – Jess was often treated like garbage. (I’d use a stronger word but would prefer to not get caught in spam filters.)
Jess frequently documented her struggles, whether it was inaccessible bathrooms, unsanitary hospital conditions, over-reactive security personnel, unsympathetic staff or, above all, wasted time. In 2014, she had 56 outpatient doctor visits and 20 ED visits. Applying the Lean principle of Value Added Time, of the 65-plus days’ worth of care she received in 2014, she reckoned that only 1.13 days was actually valuable. That waste output exceeds 98 percent.
This clearly reflects an industry that does not design for people feeling their worst and, therefore, appears to care little for its customers. (Ironic, really, when one considers that “care” is part of its name.) As Jess herself wrote, “There’s no reason that only 4.75 percent of outpatient visits and 0.08 percent of my hospitalizations [were] spent actively treating my condition. There’s no reason that I spent two solid months…of  waiting instead of healing.”
If that’s not enough, there’s plenty more recent evidence that healthcare doesn’t think very highly of patients.
- Health insurers exiting the Affordable Care Act insurance exchanges expect us to believe that their actuaries somehow did not realize the pool of hitherto uninsured Americans would be less healthy, and therefore more costly, than those already covered by employer-sponsored health insurance – especially given that the healthiest chunk of that uninsured group, young adults under the age of 26, was allowed to remain on its parents’ insurance plans.
- Both Aetna and Anthem have hinted that their future participation in the ACA exchanges is contingent upon the federal government approving their mergers with Humana and Cigna, respectively. Otherwise, patients in many rural counties – you know, the ones that suffer from a dearth of hospitals, specialists, and accessible care options – may suffer from a dearth of ACA plans as well. Sure, they’re acting like the for-profit businesses that they are, but something still smells funny.
- Mylan, the makers of the Epipen, have increased the price of its devices, sold in a pair, from $100 to $600 without improving a fundamentally flawed design that places the cap at the opposite end of the needle and results in unintentional injections of people trying to administer epinephrine to someone who actually needs it. Epipen has no competitors, so it can pretty much do whatever the hell it wants. Meanwhile, EMTs in Washington state have built DIY pens using $1 syringes and a $4 vial of epinephrine and – get this – the cap and needle are on the same end.
- A whopping 5 percent of healthcare professionals believe that patients take “complete responsibility” for their care, according to a Xerox Research survey, compared to half of patients. Ninety percent of payers and providers say patients need encouragement to lead a healthy lifestyle, compared to 55 percent of patients. Researchers suggest this is a lack of communication, but it sounds like a lack of respect to me.
- The New England Journal of Medicine has doubled down on its resistance to sharing research data, reiterating a claim made earlier this year that open data hurts scientific progress and, in turn, patients. Dave deBronkart – who probably would not have survived metastatic kidney cancer without open access to an experimental trial – told Stat News that the NEJM editorial, signed by 280 researchers in 30 countries, is “moribund.” He’s right.
- If it sounds like the latest scientific study proving that (insert food or beverage here) does (or does not) cause (insert alarming condition here) was plucked from the air almost at random, you’re on to something. Poorly designed research, studies that can’t be reproduced, and millions of variables all lead to a high noise-to-signal ratio, to the point that one researcher told The Upshot, “I can get you any result you want in any observational data set.” In other words: The results are useless.
Yes, there are plenty of outstanding doctors, nurses, technicians, caregivers, and administrators in healthcare – staffers who go to work every day with the sole purpose of doing what’s best for their patients.
Unfortunately, amid a cacophony of rules, regulations, restrictions, mandates, denied claims, mergers, acquisitions, consolidations, lawsuits, fraudsters, incentive checklists, overdoses, Zika outbreaks, ever-rising prices, greedy executives, grandstanding politicians, burned-out providers, quality scores, rating lists, failed innovations, immature business models, complex billing codes, data breaches, and PR nightmares, the industry has grown even more risk-averse, skeptical, and judgmental.
Patients like Jess receive textbook, CYA medicine that puts the needs of the institution before the needs of the patient. They are shuffled from provider to provider until someone is finally brave enough to listen, learn, and diagnose. They don’t benefit from digital health nearly as much as that those fortunate enough to be healthy. They deserve better.
The news of Jess’ death hit me hard. She was an acquaintance at best, someone I knew entirely through social media, but those interactions were enough to earn my deepest admiration and sympathy.
Jess leaves an incredible legacy. The most valuable component of that legacy, as Mandi Bishop points out, is her data trail. Amid so much pain and frustration, Jess maintained the strength to document everything that happened to her – and, on occasion, to smile. (Would that I could possess even a fraction of that strength.)
We may never fully understand the why of Jess’ passing, but her tireless effort leaves us with the what – the hours, days, weeks, and months she waited for care, for answers, for compassion, for respect. If that awful patient experience – laid bare in spreadsheets, Tweets, and photographs, for all the world to see – doesn’t provide an imperative to change the way we deliver healthcare in the United States, then I’m afraid nothing will.
I actually did know Jess quite well. She was an indomitable spirit with a ready smile and joyous laugh. Her passing hit me hard. The unnecessary suffering she went through during these last few years of her life are a particularly sad commentary, as Brian as laid-out, on the U.S. healthcare system. The legacy that Jess has left us in her writings, her personal documentary of trying to manage two serious and ultimately life-limiting conditions, is one that I truly hope will not be wasted.
It is stories such as Jess’s that inspire me, inspire all of us at Chilmark Research.
Every single one of us has a healthcare story and too often, these are not pleasant ones to tell. I founded Chilmark Research on a simple premise: Through in-depth research, help organizations adopt, deploy and use IT to improve the patient experience. As in Jess’s case, the long-term outcome for her was unlikely to be a good one. But that outcome should not hinder any of us from ensuring that her healthcare journey is not a tortuous one.
Jess and I shared the vision that IT can truly help improve this horribly disjointed and overly complex system of healthcare delivery that we currently have today and improve the patient experience. In her memory, we at Chilmark Research will double down on our efforts to better understand how technology can help all of us move beyond where we are today in the hopes that the future stories of patients will be ones of hope rather than despair.
– John Moore
Founder, Chilmark Research