Why amateurs won’t solve healthcare

By Ezra Butler on June 7th, 2012

Amateurs have a long history of solving problems. Any undergraduate enrolled in an Introduction to Psychology course will learn the creation myth behind Seasonal Affective Disorder (SAD), a disorder that results in higher levels of depression in some individuals during the winter months. In it, the protagonist is an engineer, Herb Kern, who took meticulous notes for thirteen years about his mood, meetings, phone calls, weight, sex life, appetite and more. After surveying his many filled notebooks, he identified a pattern in his mood between mid-June and mid-January. While light was previously connected to the production of melatonin, the connection between the sun and mood was only made after a plagued amateur made a plea for his own well-being.

Such narratives are the spiritual inspiration for the current flock of health and psychology start-ups. One must not be schooled in medicine, spending tens of thousands of hours learning the intricacies of biology and chemistry. To start a company based on nutrition, one does not need to study a degree in dietetics. Exercise technology need not originate with an individual who can name all the tendons in the human body. A psychology start-up need not employ anyone who has actually worked in the field. All a company needs is a unique way to journal – and, obviously, share – data.

The educated amateur-protagonist realises that more good can be achieved by approaching professionals. Thus it was that Mr Kern approached scientists at NIMH (the National Institute of Mental Health), who in turn created a lightbox to help test his hypothesis. He worked with his psychiatrists who, in turn, created a new diagnosis. The amateur was able to bring something important to the table, but the professionals tempered that and discovered something important. Mr Kern was mentioned as a co-author on the publication of SAD out of gratitude and recognition for his hard work.

Anecdotal evidence suggests many academics are being lured to join start-ups with money and impressive titles, to give the appearance of a scientific basis to justify a higher valuation for the company. “I was asked to join the advisory board of a start-up,” an accomplished and well-published PhD candidate told me, “which ostensibly focused on a field very relevant to my research.” When asked what he really thought about the product, he appeared incredulous. “Oh, they don’t actually want to pay me or ask me advice, they only want to parlay my name when approaching potential investors.”

In the spirit of Mr Kern, the Quantified Self movement has arisen, in which the participants constantly record whatever they are possibly able to measure. Many share the information publicly. According to its Wikipedia page, participants are aided by technologies like Fitbit, Nike+, the Zephyr Bioharness, Lark, and Withings. But it seems many of the proponents of this movement are lay people, not scientifically or medically trained.

Quantified Self Labs was founded by two WIRED editors, Gary Wolf and Kevin Kelly. Mr Kelly is a high school drop-out who suffered an episode akin to the Jerusalem Syndrome at the age of 27 while employed as a freelance photojournalist. He subsequently wrote a canon of books, including the somewhat incomprehensible Out of Control. Mr Wolf studied Literature and History for his Bachelor’s Degree and took a Master’s in Political Science. Three years after launching, they recruited a Director, Alexandra Carmichael, whose undergraduate studies were in Molecular Genetics and Molecular Biology. Subsequently, she worked as a researcher focusing on an enzyme focused on by cancer researchers.

Fitbit was founded by Eric Friedman and James Park, who, prior to Fitbit had created a large peer-to-peer photo sharing application. They both studied Computer Science, the former holding two degrees and the latter holding none. Currently, there are no job openings for any science or research based positions in the company, nor does a search on LinkedIn surface any employees whose job titles indicate any medical or nutritional research history.

A former Mozilla user experience head, Aza Raskin, recently created Massive Health, with the mission of giving medicine a “design renaissance”. His founding team includes alumni from Apple TV, Second Life and LinkedIn. The Chief Strategy Officer, Andrew Rosenthal, has a BA in Health and Society (Bioethics) from the Department of the History and Sociology of Science at University of Pennsylvania and is completing a MBA from Harvard Business School focusing on Consumer Health. It is important to point out, though, that the Department of the History and Sociology of Science does not require any more biology or anatomy courses than a typical liberal arts major.

The claim on Massive Health’s website is that they have fielded over 750 applications, with over half from doctors and health professionals, because everyone knows that “change is necessary”. They don’t say how many doctors and health professionals they actually hired, nor do they have any job openings for individuals with those qualifications. A search on LinkedIn doesn’t reveal any jobs filled by such candidates.

A more recently launched start-up, Talktala, has created a platform for group therapy. Its chief executive and co-founder Oren Frank used to be the Chairman and CEO of advertising giant McCann Erickson and McCann Digital in Israel. The CMO, Ori Carmel, used to be an Advertiser Portfolio Manager at Commission Junction, a well-known affiliate marketing platform. Roni Frank, “Head of Clinical Relations” and co-founder is currently studying for her Master’s degree in Psychoanalysis and Psychotherapy. She will complete the degree in 2013. Her bachelor’s degree was in Computer Science, and she had previously worked as a programmer for Amdocs, a large international software company.

The marketing copy on the Talktala website includes such phrases like “Freud would have loved this” and refers to articles about Skype-based therapy to provide a basis for their science. However, they admit in the Frequently Asked Questions that Talktala is not a substitute for online therapy.

In 2010, Buster Benson created Health Month, an online game which combined gamification and better health practices. He has a Bachelor’s degree in English and Creative Writing. Subsequently, he founded Habit Labs last year, which subsumed Health Month and which also launched Bud.ge. Upon creating the new company, he hired Amelia Greenhall who does have an MA in Public Health (though a Bachelor’s degree in Studio Art and Electrical Engineering) as a product manager.

The entire blogosphere and tech industry whipped itself into a frenzy when activist investor Daniel Loeb “outed” former Yahoo! CEO Scott Thompson and his sexed-up CV. Mr Loeb discovered and published in a letter to the Yahoo! board that the former PayPal president Mr Thompson had written on his CV that he had a degree in Computer Science, when in reality, he had one in Accounting. Any intelligent observer could see that Mr Loeb used “résumégate” as an excuse to grind a pre-existing axe. None of the many full time investigative journalists previously “uncovered” the lie, because one’s qualifications are largely irrelevant. Instead, the exposé was used post-facto as an indicator of a pattern of perfidy and cause for dismissal and a coup d’etat.

A similar argument could be made about these health-related start-ups, which aggregate personal data by the terabyte. The founding team’s credentials are only questioned when egregious errors occur. Although, when it was discovered Fitbit shared private sex information on the web, outside of a few blog posts, no one was overly shocked. As a start-up, privacy snafus are a rite of passage and almost to be expected. For a medical provider, though, they would be a public scandal.

Does it matter that no member of these health related start-ups seems ever to have taken the Hippocratic Oath? In each case, the benefit the product gives is apparently clear. Using sensors, Fitbit allows people to track their sleep patterns, their weight and BMI, their exercise patterns and more. By connecting them with licenced therapists, Talktala enables people to get cheap group therapy on the Internet. Health Month and Bud.ge use gamification to achieve a healthy lifestyle. What could be dangerous about that?

Recently, a North Carolinian blogger was threatened with jail for “practising dietetics or nutrition” whilst unlicenced. While he had a disclaimer indicating he lacked all credentials, by sharing his personal experiences and acquiring a following, he became a de facto expert in the field of the Paleo diet and diabetes. Moreover, once becoming an expert, he began to charge a fee for private dieting advice.

Should a company like Fitbit be similarly liable for the implied fitness advice its product provides? Does Fitbit identify unhealthy practices and warn the user? Or does it simply inundate the customer with data, who, in turn, must decide how important or relevant it is?

Fitbit, for example, does not suggest to people that they should use their product in co-ordination with a licenced professional. Their credo is to promote quasi-informed autonomy. For instance, the food plan tracker focuses on calories. A conversation with a registered dietitian would reveal a difference in calorifically dense foods which, while containing a certain amount of calories, also contain more sodium, fat and other potentially disastrous contents. I spoke to one: she informed me that creating a diet solely on the caloric count was more than simply stupid, but also potentially dangerous.

Fitbit offers is “Fitbit Trainer”, which algorithmically creates a fitness plan tailored for premium users. Outside of that, the words “dietitian”, “doctor” and “nutritionist” are absent from the site.

This is not accidental. By not mentioning healthcare professionals, Fitbit does not require HIPAA compliance. It can excuse itself from national standards for the security of protected electronic health information. By informing potential clients that Talktala is not a substitute for online therapy, the relationship between accredited therapist and paying customer is non-binding in any privileged way. What might be touted as the “future of nutrition” and the “future of therapy” really has very little to do with either.

Massive Health’s new application “Eatery” identified the inherent caloric problem with Fitbit, and decided to go the “lifestyle” route. The application asks the user to take a picture of every meal and runs analytics on the user’s eating patterns based on location, time and healthy nature of some of the user’s meals.

The unfortunate truth is, according to a recent study, most people do not actually know how healthy the food is that they order in restaurants. As the Eatery app freely admits, it has little to do with food and everything to do with psychoanalysing the user. The company, therefore, cannot be held to any sort of risk, because it is simply a new-fangled journalling application. It is no wonder the company does not boast about having an in-house nutritionist: that would be taking the job away from a picture-snapping world-travelling “mad scientist”.

It seems the consensus of Computer Science geeks, Creative Writing majors, amateur photographers and advertising executives is that all health problems can be solved by increasing self-knowledge, autonomy and education, without the need for professional interference. Why are both macro- and micro-epidemiology now the domain of the cult of the amateur? Perhaps actual health professionals should be involved in the health renaissance. That really would be revolutionary.

Editor’s Note: Ezra Butler’s first (unsuccessful) start-up was a psychometric application intended to simplify the practice of journaling for the clientele of cognitive behavioural therapists.