On a train to New York City, I found myself sitting next to a doctor from Johns Hopkins. Mid-career. Confident. As it turned out, he was also from a family of doctors.
In his career, he said he’d alternated between research and seeing patients and I asked him if he was getting what he’d hoped out of it. He said he had at the beginning, when he could practice more the way his dad had, like taking the time he needed to treat his patients. But more recently, demands from the government and insurance providers were requiring him to spend more and more patient time gathering information and creating medical records about their visits.
It gave him “an awful choice,” he said. “I can either spend much of my patient time looking down at my pad or tablet and taking notes or I can look them in the eye. I went into medicine to establish healing relationships, it’s how I saw my dad practice, but now this beast has to be fed every day.”
“What beast,” I asked. “Because I’ve chosen to keep talking to my patients,” he responded, “I still have to record all their medical information before I forget what we talked about, so almost every night I spend between 9 p.m. and midnight ‘feeding the data beast’ because, of course, my wife and kids get to see me for an hour or so once I get home.” “The volume of it is grinding me down,” he continued, “but our insurance system requires it. What I looked forward to as a doctor every day is getting harder to come by.”
I’ve noticed this from the other side too. When I go to a specialist or for my regular check-ups I’m faced by my doctor as well as “a record keeper” with a touch screen. I’m always asked whether “I mind” having record keepers there and can always ask them to leave if I want to talk “one-on-one,” but it changes the entire dynamic in the room. Is this visit about me or my medical information?
It’s not whether electronic record keeping is working as intended, or is actually helping to manage medical costs that caught my eye this week. Instead, it’s how the generation and use of patient data is placing more obligations (with fairly profound ethical implications) on the so-called healing arts, and how far those obligations extend beyond data privacy and confidentiality. Among other things, it got me wondering whether even our best doctors and medical caregivers are treating us as collections of data points instead of “as whole patients” in the grind of it all.
For centuries, a doctor’s ethical obligations have been set forth in the Hippocratic Oath, with its standards being tailored to current understandings about health and healing. For example, to reflect our growing environmental awareness, a current version of the Oath widens the focus of care from the individual patient to the health of the community and the planet itself:
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.
My responsibility [also] includes these related problems, if I am to care adequately for the sick:
I will prevent disease whenever I can, for prevention is preferable to cure.
I will protect the environment which sustains us, in the knowledge that the continuing health of ourselves and our societies is dependent on a healthy planet.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those [who are] sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
In the light of today’s Hippocratic Oath, it was easy to find several of its shadows.
Can our doctors provide “warmth, sympathy and understanding” while they are also filling in the blanks in their paperwork during the few minutes they are allotted to spend with us?
When it comes to my data, how is it being used, who is using it, and how exactly is “my privacy” being protected?
Is this data collection primarily designed to make “the business of medicine’” more cost effective and efficient, or does it also promote my health and healing?
What is my responsibility as a patient, not only as a collaborator in my medical outcomes but also regarding “the multiple lives” of the data I’m providing?
In these regards, some food for thought this week came in the form of a new Hippocratic Oath that has been proposed by West Coast doctor Jordan Shlain. I think you’ll agree that in some ways his proposed Oath makes our jobs as patients and our doctors’ (and other medical professionals’) jobs as healers even more fraught than they were already.
Here’s Dr. Shlain’s proposed Oath, with my initial impressions [in brackets] following each of its statements.
1. I shall endeavor to understand what matters to the patient and actively engage them in shared decision making. I do not ‘own’ the patient nor their data. I am a trusted custodian.
[Instead of doctors doing and patients receiving, the emphasis on joint decision-making shares the health and healing burden more equitably. Unanswered is whether patients should own their medical data.]
2. I shall focus on good patient care and experience to make my profits. If I can’t do well by doing good and prove it, I don’t belong in the field of the healing arts.
3. I shall be transparent and interoperable. I shall allow my outcomes to be peer-reviewed.
[Both 2 and 3 confront “the business of medicine” squarely in the Oath, acknowledging that care should be delivered with greater transparency around a doctor’s outcomes for patients, which the data now allows. As the business of medicine publically proves its worth, patients will become more like shoppers in a marketplace. What this new reality means in terms of accessibility or quality of care is, of course, uncertain.]
4. I shall enable my patients the opportunity to opt in and opt out of all data sharing with non-essential medical providers at every instance.
[Recognizing a patient’s interest in his/her data, information will need to be disclosed about essential and non-essential users of that data and about each patient’s ability to limit how it is shared.]
5. I shall endeavor to change the language I use to make healthcare more understandable; less Latin, less paternal language; I shall cease using acronyms.
6. I shall make all decisions as though the patient was in the room with me and I had to justify my decision to them.
7. I shall make technology, including artificial intelligence algorithms that assist clinicians in medical decision-making, peer-reviewable.
[As AI and augmented intelligence programs become more common in medicine, protecting proprietary business information should not inhibit validation of the tools a doctor is using to treat us by his or her professional peers.]
8. I believe that health is affected by social determinants. I shall incorporate them into my strategy.
[This one goes further into the community behind the patient. As Dr. Shlain argues: “Someone’s zip code can tell you more about their health than their genetic code.”]
9. I shall deputize everyone in my organization to surface any violations of this oath without penalty. I shall use open-source artificial intelligence as the transparency tool to monitor this oath.
[With doctors working until midnight to feed the data beast and stressed about market competition from other practice groups, their willingness to open themselves to these kinds of ethical challenges from within their organizations seems almost utopian, but at the same time, this part of the proposed Oath acknowledges that patient/consumers alone won’t be able to police this rapidly evolving profession.]
Increasing reliance on data collection and algorithm-driven automation is changing the medical profession into a business. It also changes our jobs as patients, Where once we were passive recipients of “the healing arts,” we are now being called upon to become more engaged consumers, with rights to more information about our care and additional options in the marketplace. Moreover, we should be as concerned about the uses of our medical information as we are about how our other personal data is being used (or misused) by Google, Facebook or governmental bodies like the police and IRS.
At the same time that doctors should be anticipating more changes to the Hippocratic Oath, the job of being a patient and the responsibilities that come with it are also becoming more burdensome. It’s not doctor “up here” (with all the responsibility) and patient “down there” (with almost none of it) any more. We’re confronting an uncertain future together now.
This post was adapted from my November 10, 2019 newsletter. When you subscribe, a new newsletter/post will be delivered to your inbox every Sunday morning.