Among the most frustrating dilemmas facing patients – and physicians – is when doctors are unable to assign a specific diagnosis. Just having a name for a condition can be remarkably reassuring to patients (and families), providing at least a basic framework, a set of expectations, and perhaps most importantly, an explanation for what the patient is experiencing.
Sara Wheeler, writing in the New York Times in 1999, poignantly described the experience of traveling through “the land of no diagnosis.” Ten years later, the NYT featured a story called “What’s Wrong with Summer Stiers,” about another patient without a diagnosis – and about a fascinating initiative at the NIH, the “Undiagnosed Disease Program” – specifically created to meet this need.
Investors just ponied up well over $100 billion for a piece of the social media giant Facebook. While Mr. Zuckerberg and his co-founders deserve a hearty congratulations, I find some eerie parallels between Facebook and accountable care organizations. The similarity does not bode well for either business model.
1. The users are not the customers: Facebook sells its users to marketeers. ACOs sells its patients’ health care utilization to insurers.
2. It’s the data and it’s not yours: Facebook’s targeted ads are constructed off of prior usage patterns. ACO’s shared savings calculations are built off off actuarially determined health care utilization patterns.
3. Sovereign hostility: Washington DC views information technology and health care as distractions from the true task at hand: restoring the U.S. manufacturing base.
4. Do you care, really? Now that the wunderkids in charge of Facebook have made their millions, it remains to be seen if they’ll work as hard in delivering value to its users. Ditto for all the salaried docs working for ACOs, who no longer have to arrive early, skip lunch and stay late.
5. The long term: Yahoo once was the darling of internet investors. Even if ACOs have initial success, is a better care model being developed as you are reading this?
As an ever increasing amount of money seems determined to chase an ever greater number of questionable ideas, it’s perhaps not surprising that inquiring minds want to know: (1) Are we really in a tech bubble? (2) If so, when will it pop? (3) What should I do in the meantime?
I’m not sure about Question 1: I’ve heard some distinguished valley wags insist we’re not in a tech bubble, and that current valuations are justified, but I also know many technology journalists feel certain the end is neigh, and view the bubble as an established fact of life – see here and here. The surge of newly-minted MBAs streaming to start-ups has been called out as a likely warning sign of the upcoming apocalypse as well.
I have the humility to avoid Question 2: as Gregory Zuckerman reviews in The Greatest Trade Ever, even if you’re convinced you’re in a bubble, and you’re right, the real challenge is figuring out when to get out. Isaac Newton discovered this the hard way in the South Sea Bubble, leading him to declare, “I can calculate the motions of heavenly bodies but not the madness of people.”
I do have a thought about Question 3, however – what to do: reconsider digital health — serious digital health.
Here’s why: Instagram and similar apps are delightful, but hardly essential; most imitators and start-ups inspired by their success are neither. It doesn’t strain credulity to imagine investors in these sorts of companies waking up one day and experiencing their own Seinfeld moment, as it occurs to them they’ve created a portfolio built around nothing.
When most of us think about Facebook, the first phrase that comes to mind probably isn’t “good Samaritan.” Facebook is an easy way to keep in touch with friends, and it can be a gigantic time-suck, for sure, but last week the site did something that could truly benefit a lot of people. On May 1, Facebook launched an initiative to encourage users to become organ donors, and within 24 hours there had been a spike in the number of people volunteering their body parts for the good of others.
California’s registry saw almost two months’ worth of people sign up within the first day after the Facebook put up the feature.
Organ transplantation is one of the miracles of modern medicine, but there simply aren’t enough organs to go around for all the patients who need them. According to the United Network for Organ Sharing (UNOS), there are 72,900 people on active lists waiting for an organ. Compare that number to the 2,263 transplants that took place between January 2011 – 2012. Last year, more than 6,000 people died waiting for an organ.Obviously, increasing the number of organ donors could have a huge impact on the number of transplants – and on the lives of thousands of people.
Why don’t more people become donors? Some object on religious grounds, but the biggest obstacle is inertia. Most of us who sign up to be organ donors (I’m one of them) do so when we renew our driver’s license, by checking a box on a form saying we want to donate our organs. If you don’t mark the form, it’s assumed you don’t want to donate. Most people only encounter this choice every few years, when their driver’s license is up for renewal, and it’s hard to think about such a decision while standing at a Department of Motor Vehicles counter.
Some countries, such as Spain, Australia and Germany, have opt-out systems. It’s assumed that you are willing to donate unless you’ve said you prefer not to. Rates of donation in those countries are sometimes higher than in the US, although some presumed-consent countries have much lower rates. (Factors other than the number of donors, like the availability of surgical facilities and transplant surgeons, can affect the number of actual transplants in different countries.)
When I first entered the venture capital business 10 years ago after being an entrepereneur, my partners warned me that “my bar” for new investments would get higher over time. In other words, the criteria to make a new investment – clearing “the bar” – would get more strict with time as I developed more experience and saw more things. I found this to be very true, and the notion that investors get wiser and more selective over time has become common wisdom in the industry.
But there’s something very new going on in the last few years – something very striking. Simply put, the collective bar of the investment community to fund young companies has recently gotten higher – much higher.
The entrepreneurs I speak to are feeling it every day. When they pitch their new idea to investors, they are told to build a prototype first. When they build the prototype, they go get customers. When they get customers, they are told to show engagement metrics. When they show engagement metrics, they are told to run some monetization experiments. When they run monetization experiments, they are challenged to prove scalability. Maybe I have Passover on the brain this week, but it’s like investors are putting entrepreneurs through a nightmarish version of Dayeinu, where no matter what they achieve, it’s never enough (speaking of Passover, if you haven’t seen this Jon Stewart clip of Passover vs. Easter, it’s a must. I’ll wait.).
Why is the new investment bar so high today? Isn’t there plenty of euphoria and “animal spirits” to go around with the IPO market returning, marquee acquisitions (e.g., Instagram at $1 billion) and the impending, earth-shattering Facebook IPO?
At the end of January, the European Commissioner for Justice, Fundamental Rights, and Citizenship, Viviane Reding, announced the European Commission’s proposal to create a sweeping new privacy right—the “right to be forgotten.” The right, which has been hotly debated in Europe for the past few years, has finally been codified as part of a broad new proposed data protection regulation. Although Reding depicted the new right as a modest expansion of existing data privacy rights, in fact it represents the biggest threat to free speech on the Internet in the coming decade. The right to be forgotten could make Facebook and Google, for example, liable for up to two percent of their global income if they fail to remove photos that people post about themselves and later regret, even if the photos have been widely distributed already. Unless the right is defined more precisely when it is promulgated over the next year or so, it could precipitate a dramatic clash between European and American conceptions of the proper balance between privacy and free speech, leading to a far less open Internet.
In theory, the right to be forgotten addresses an urgent problem in the digital age: it is very hard to escape your past on the Internet now that every photo, status update, and tweet lives forever in the cloud. But Europeans and Americans have diametrically opposed approaches to the problem. In Europe, the intellectual roots of the right to be forgotten can be found in French law, which recognizes le droit à l’oubli—or the “right of oblivion”—a right that allows a convicted criminal who has served his time and been rehabilitated to object to the publication of the facts of his conviction and incarceration. In America, by contrast, publication of someone’s criminal history is protected by the First Amendment, leading Wikipedia to resist the efforts by two Germans convicted of murdering a famous actor to remove their criminal history from the actor’s Wikipedia page.
By the numbers, pharma’s usage of the social media to drive corporate, brand and disease management objectives has never been greater. But how robust are pharma’s channels and programs on Facebook, YouTube, Twitter and other networks?
Consider a few table stakes for digital communication generally:
Tell the whole truth and nothing but
If applicable, open comments but police spam and abuse (a concept FB now enforces for all unbranded health pages).
Support the brand you have while you build the one you want.
Stratify messages, channels and audiences to support that strategy.
Develop and monitor KPIs, some qualitative. It’s not just about the money.
Now consider a few typical characteristics of pharma social media content these days:
It’s understandable that a healthcare delivery system would have a mindset and business objective to keep referrals within its network of care providers. Businesses have a right and an obligation to try to hang on to their customers.
It’s a different issue whether closed or walled garden HIT is an acceptable means toward that end.
Outside of healthcare, we understand and can accept that businesses used closed, proprietary IT as part of their business model. Apple has designed their iPod with an eye toward incompatibility and high hassle factor in not being plug-and-play with other music players and systems.
IMHO, however, healthcare is different. Keep your proprietary business model away from my body and gimme my damn data.
Google+ v. Facebook on Data Portability
We are witnessing an important dynamic begin to play out between FB and Google+. I note a significantdifference in mindset and policies toward data portability.
FB seems to have a mindset to maintain customer data within its walled garden as much as possible. For example, when G+ first opened, I remember seeing an early article about how easily to import some of your FB data into G+; hours later I read an article how FB had plugged this leak. Deleting your FB account is difficult — there are articles walking you through the 634 steps you need to go through.
G+ seems to be built on a diametrically opposing mindset. You can download your data. You can export your data and import it into another social networking site. You can easily delete your G+ account and wipe out your data.Continue reading…
Like everybody else, physicians are expanding their online personal identities. At the same time, they are trying to comply with codes of conduct that help consumers trust them and their profession.
There’s no problem so long as the personal online activities of physicians don’t jeopardize their obligations as professionals, which means that there is a problem, unfortunately.
In a recent study for example, 17% of all blogs authored by health professionals were found to include personally identifiable information about patients. Scores of physicians have been reprimanded for posting similar information on Twitter and Facebook, posting lewd pictures of themselves online, tweeting about late night escapades which ended hours before they performed surgery, and other unsavory behaviors.
As I mentioned Monday, medical students and younger physicians who grew up with the Internet have to be particularly careful, since they had established personal online identities before accepting the professional responsibilities that came with their medical degree.
Medical schools, residency programs and teaching hospitals can help young professionals manage their dual lives online. Some have implemented curricula and policies that foster appropriate use of social media, but surprisingly these programs are not widespread. In a recent study of medical schools that had experienced at least one incident in which a student used social media inappropriately, only 38% had adopted formal policies to handle future incidents. An additional 11% reported they were developing such policies. We can do better than this.
Non-teaching hospitals, CME providers and professional organizations like the American Medical Association can also help providers navigate the online world. The AMA’s recent guide to Professionalism in the Use of Social Media provides helpful guidance in this regard.