The long tail of rare medical conditions has mostly been an unexplored market. Office of Rare Disease Research at NIH defines a disease or disorder as rare when it affects fewer than 200,000 people in America. Another non-profit organization, the National Organization for Rare Disorders‘s database lists more than 6,000 rare disorders that cumulatively affect approximately 25 million Americans. No wonder that “Orphan Diseases” is a synonym for the list, aptly describing the lack of attention from commercial organizations.
There are exceptions though, perhaps due to changes like Orphan Drug Act of 1983. Take Genzyme‘s wonder drug cerezyme for example. It’s target population (worldwide) are the roughly 10,000 patients affected with Gaucher’s Disease. For each patient, the drug treatment costs $200,000 annually and is needed for life. No wonder that even with that small target market, cerezyme accounts for about 30% of Genzyme’s revenues, netting close to a billion dollars every year ($1.24B in 2008, for example).
Such exceptional, near-magical stories are not limited to pharma wonderland. Patients with some rare conditions have found exceptional support through dedicated online communities started by inspired individuals who are often patients themselves. PatiensLikeMe was started for ALS, for example. Ben’s Friends was started by Ben Munoz in 2006 for AVM. There are many more niche online destinations for rare conditions, and that fact is hardly surprising.
The really interesting trend, though, is the emergence of companies/organizations that offer something at a higher level; beyond just a focused online destination for an uncommon disease. CureTogether is a good example. By aggregating self-reported data from patients, it aims to create an open-source research database for uncommon conditions. Similarly, Bens’s Friends acts as an incubator and clearinghouse of online communities focused on the long tail of rare medical conditions. They claim to have around 25 networks and over 7,000 patients in their family of ad-supported communities. The sites don’t have huge number of visitors, but that is perhaps due to the implicit rarity of target audience. See the quantcast chart below, for example, where I compare couple of their communities that are supposedly the most popular.
Regardless of visitor numbers, Ben’s Friends points to an interesting evolution phenomenon for healthcare information online. Building communities is now old-school. The new set of ideas are at a higher level of abstraction.
Twitter seems to have legitimized the value behind aggregating real-time conversations from a large group of participants. Ironically though, even as twitter continues to find it’s own business model, startups like TruthOnCall are applying the same fundamental concept to healthcare.
Pharma, Media, Government organizations sometimes find themselves in dire need for a quick survey of licensed physicians. They are happy to pay honorariums for a response, but how does one quickly assemble a large enough group of physicians based on a specific criteria (like specialty, location, etc.)? TruthOnCall aims to serve that need. Physicians, verified through their provider ID (NPI), sign-up on TruthOnCall to receive text questions through SMS. If they respond within 24 hours, they earn $10 per question. Once the amount reaches $100 or above, TruthOnCall mails a check to the physician.
Granted that there is a need here. Big companies often find it hard to get any objective granular data on strategic issues- surprise move by a competitor, drug recall in same class, end-of-the-year justification for a marketing campaign, etc. The usual source are industry analyst firms like Frost or Gartner, but the facts in those reports are often too generalized. So getting feedback from a thousand physicians in a few hours can be worth a lot.
But all that depends on the critical assumption of consistent demand and supply. There needs to be enough supply of physicians (in a given specialty) signed up, and there needs to be a demand from an organization willing to pay. Getting the former is the hardest. Metcalfe’s Law from telecom applies here. It’s clear that the value of such a network grows exponentially with the number of connected users in the network. But niche social networks don’t crystallize by themselves overnight. To reach that critical mass (where networks start having “value”), they need significant money or marketing or both. No good way to tell how TruthOnCall is doing with respect to incoming demand and supply.
Some side-notes: There are a few physician twitter celebrities- (@KevinMD, @DeanOrnishMD, @jhalamka, @tedeytan…). Maybe a viable alternative for rapid physician feedback is getting these guys to tweet the question. Generic networks aside, Epocrates is one good example of a viable physician network. Incidentally, this sort of honorarium service is a good fit for Doximity, which is another physician networking startup by the co-founder of Epocrates.
Doximity is a mobile-based social network for physicians. It brings back memories of Sermo, which was my first review, written more than two years ago. DoximityÂ was started by Jeff Tangney who was also one of the co-founders of Epocrates- an extremely popular physician information tools vendor that recently filed for an IPO in July 2010.
The free app is currently only available for iPhone platform. It offers a staple of standard social networking functionality- creating profile pages, looking up colleagues based on certain criteria, finding med-school classmates, sharing private contact info, sending messages etc. Being mobile-focused gives it some amount of differentiation from other online physician networking sites, I guess. Users can also look up phone numbers and location maps of healthcare facilities like pharmacies but I dont quite see what is the unique selling point in that. Below is a short video demo of some of the functionality.
On to more important things.
Their about page hints at their possible revenue models – “We have a number of fee-based products in the works, including a service for hospitals and clinics to better manage their scheduling and on-call lists“. In an online interview with iMedicalApps, their CEO gave more details. First, they plan to sell a premium version (base version will always be free) to hospitals as a real-time ‘enhanced communication tool’ for physicians so they can get quick consults, updates etc. from each other. That may work, but only if the hospitals or physician groups foot the complete bill for such an ‘enhancement’ tool. I doubt individuals would pay anything for it- enlightened physicians may already have effective substitutes through enterprise EMR messaging functionality or Linkedin/Twitter.
Second one was honorariums given for occasional survey participation. Hmm…don’t think practicing physicians would find that lucrative enough to join, since the time spent on doing such things is almost never worth the money that can be offered in return.
Third one was mediation fee for physician recruiting. Now that may work, but it depends on how they structure the job-exchange functionality. Because there is a real risk of physician recruiters short-circuiting Doximity and approach the candidate physicians directly if they can identify them for free on the network.
Irrespective of the vague details on the revenue model, I’m a supporter of niche social networks. I think the Facebooks and Linkedins of the world are eventually going to be victims of their own success. Beyond a certain size, generic networks risk imploding under their own weight. Just like MySpace did. Professional networks (especially for highly paid professions like doctors, lawyers) need to serve very specific purpose and be fine-tuned to that. One specific aspect that may be served well by a real-time physician social network is scheduling. Enterprise-wide, rules-based smart scheduling that enables physicians to manage their availability in a group setting is a tough problem to solve. There is some analogy to be found in the nurse scheduling space- a startup called YourNurseIsOn. This page explains what they do. That kind of service, I think, is something that large healthcare establishments can find convincing enough to pay for.
By the way, those who know Joomla (the popular open-source content management system) would notice the uncanny resemblance of Doximity logo to Joomla’s logo. Hopefully they will realize it at some point and get a new logo made.
MeYou Health is a ‘well-being company’, in their own words. Their offerings help users engage in a healthy lifestyle, using their social network support. If you are like me, that doesn’t really tell you what they do. So I decided to find out more.
MeYou Health started in 2009, and is funded by Healthways, Inc. Healthways is a 30-year old, publicly traded health services company based in Franklin, TN. They main business is to provide disease management and wellness programs to managed care companies, self-insured employers, governments, and hospitals. MeYou Health seems to be a good extension to what they do.
The current ‘products’ being offered are all aimed at fostering behavior change and provide social support. The available lineup is:
Daily Challenge: Released September 2010. Sign up through a Facebook account, and you get daily emails encouraging one small ‘positive’ action like eat an apple, rearrange your desk. Points, badges and levels are achieved as actions are completed. There is added social functionality of peer-to-peer competition, benchmarking etc.
Community Clash: A web-based game that allows players to discover their communitiesâ€™ health to other U.S. cities by choosing â€œcardsâ€ that represent health indicators such as obesity, smoking, diabetes, etc. The goal of this poker-like game is to bet on which city is more healthy. Underlying data for it is sourced from several databases that were promoted by the HHS led challenge, the Community Health Data Initiative (CHDI). This page lists those databases, and I found it to be a good bookmark of what open-databases are available around certain health-related topics like diabetes, uninsured etc.
Change Reaction: Another Facebook app that lets you record a small ‘positive action’ and pass it on to your friends. The idea is to create a growing chain of people who do it, and hopefully create a big trend.
EveryDRINK: A slick Adobe AIR desktop widget that lets you set a daily goal of drinking water, and then subtly reminds you to get a drink periodically.
They have some other under development, listed here. There is no doubt that behavior is a critical factor for healthy lifestyle. And changing behavior is about influencing the micro-choices we make hundreds of times every day (like taking the stairs instead of elevator or skipping soda for water). So there is a role for services that guide and encourage individuals making the right healthy micro-choice.
But such guidance source needs to be omnipresent in order to be effective. What if I end up ignoring my email or desktop alert after the first few times? Or don’t really care about Facebook? Intelligent mobile platforms, ubiquitous connectivity and sticky networks are promising trends that will eventually pave the way for viable solutions. Ones that consumers may even be willing to pay for.
In their own words ‘Psych Central is the Internet’s largest and oldest independent mental health social network’. From what I can find, it seems to be true. They have been online since 1995, and last year got close to half a million unique visitors.
So consider it as the social network that started before the age of social networking. It now offers blogs, forums, reviews, news, feeds, tweets and other community features to people interested in mental health. Seems like they are making a decent revenue with it too.
Always good to see focused, pragmatic and simple solutions being successful. Proves the point that social networking has more potential when done in a niche way.