BY Kate Rockwood -  Web de www.fastcompany.com

1. Melinda Gates, cochair and trustee, Bill & Melinda Gates Foundation
Nimbly throwing the foundation’s bucks behind both big-picture, tech-oriented, long-term solutions and modest, immediate action plans, Melinda Gates is a formidable force in the fight for health care in developing nations.

2. Anthony Atala, director, Wake Forest Institute for Regenerative Medicine
The first doctor to bioengineer a human bladder and successfully implant it in a human, Anthony Atala and his staff are now busy growing 22 different tissues–from heart valves to fingers–planting them at the forefront of this (ahem) growing field.

3. Jay Parkinson, founder, Hello Health
Mixing non-conventional payment structure (monthly subscription fee, PayPal but no insurance) and eyebrow-raising communications (e-mail, instant messaging, even house visits), Jay Parkinson’s Hello Health offers a wildly popular alternative to the current model of high insurance costs and eight-minute office visits.

4. James Heywood, cofounder and chairman, PatientsLikeMe
Following his brother’s diagnosis with ALS, Heywood launched PatientsLikeMe–think of it as a social-networking health site on massive steroids. People with like diseases input clinically validated data, helping them empathize and learn from others’ experiences, while physicians and researchers can tap into the rich info to further treatments.

5. Thomas Frieden, director, Center for Disease Control & Prevention
Picked by Obama to head the Center for Disease Control & Prevention, Frieden earned his stripes first by fighting tuberculosis in India and then as the vocal force behind many of NYC’s most aggressive public health initiatives in recent years–from posting calories on menus and banning trans fat, to reducing public smoking–proving that sometimes the most creative way to tackle a problem is head on.

6. Peter Neupert, vice president of Health Solutions Group, Microsoft
A multi-trillion-dollar industry still limping along on handwritten notes? Not for much longer, if Neupert and his HealthVault team, part of Microsoft’s electronic health record initiative, have anything to say about it.

7. Steve Case, founder and CEO, Revolution Health Group
First he cofounded AOL, then Steve Case turned his attention to health care. Now everyday users of the extensive online portal can create profiles, answer each other’s queries, rate their doctors, and deploy an army of widgets–all aimed at democratizing health information.

8. Hans Rosling, professor of global health, Karolinska Institute in Sweden
We’ll admit it: Rarely do we think of statistics as a particularly creative field. But Hans Rosling’s trend-revealing software–which first garnered major attention when it helped identify a new paralytic disease in Africa–is dramatically reshaping views of global health and poverty trends.

9. Douglas Melton, codirector, Harvard Stem Cell Institute
Douglas Melton’s pioneering work to create new stem-cell lines that could replace malfunctioning cells in the pancreas that are linked to diabetes would earn him praise enough. But it’s his creative solution to use adult skin cells–thereby sidestepping the embryonic stem cell debate entirely–that will smartly keep Melton and his work clipping along, sans controversy.

10. Anne Wojcicki, cofounder, 23andMe
Others may have figured out how to crack the DNA code, but it’s Anne Wojcicki who’s lured the masses (and Silicon Valley celebs) to offer up their saliva for private genetic testing during swank “spit parties.” She and her partner, Linda Avey, are now compiling customers’ privacy-protected data into a research-ready database.

An example of people questioning “Place” in their development comes from the November issue of the Harvard Business Review.  Their article “Community Relations 2.0” discusses the utilization of social media to create online communities that deepen relationships, organize people, synthesize knowledge, and filter information.   When discussing the ability of online communities to gather information from disparate sources into meaningful data, the article focuses on the growing ALS population and their usage of the site: PatientsLikeMe.

Medical knowledge tends to progress slowly, acknowledges authors Gerald C. Kane, Robert G. Fichman, John Gallaugher, and John Glaser.  They conduct studies that take years.  They publish their results in white papers.  Results are refuted by other doctors conducting other year-long studies.  For the patient, this process can seem like swimming through Jell-o — full of sugary hope, but tough to slog through.

PatientsLikeMe asks:  ”Do you have a life-changing condition?”  (There’s that word: life-changing.)  ”Learn from the real-world experiences of people just like you.”  Their philosophy? All about openness.  ”We believe sharing your healthcare experiences and outcomes is good.”

This is quite different from hospitals where privacy laws ensure that each interaction is focused on the patient, and from research facilities where proprietary tactics shut the door on open discussion.  There, the focus is insular.  For PatientsLikeMe, the focus is broad, sweeping.  There is no focus — there are open minds and open eyes.

The concept is simple.  The patients share their stories, their insights, their feelings. They document their health, their symptoms, their moods.  They create a community for anyone wishing to analyze his/her place to do so.  And they, in turn, learn from others just like them.

It’s an empowering site.  There’s the man who reviewed research that supported his belief that he was not getting enough medication to treat his condition.  He shared it with his doctor, who reviewed the data, concurred, and upped the man’s dosage, thereby improving his quality of life.

There’s the community of ALS patients who shortened the length of a study from years to months. From the article Community Relations 2.0: “The site has aggregated patient-reported data heretofore inaccessible to the general public.  Community members even band together for sophisticated research efforts.  Inspired by a report suggesting that lithium may benefit ALS sufferers, members recently launched what PatientsLikeMe cofounder Jamie Heywood describes as ‘the first real-time, real-world open  and non-blinded, patient driven trial.’ “

Say it with me.  Wow.

These people believe that it’s not enough to stoically know how only their lives are going.  In order to move out of the place that they’re in, they actively seek to learn what’s going on in the medical industry and the community of people just like them.  They’ve identified not only their Place, but also where they’re going.

Online medical websites are now more advanced, allowing patients to interact with one another, share experiences and hopefully make better decisions about health issues. Hospitals marketers should follow these. The benefits are that we learn what issues are important to the patient, how to speak their language, and how to better communicate our brand to them.

In a recent issue of the Washington Post, was an article about the many online health sites that have a presence in the Washington, DC area.  A new one, WiserTogether, began when  a couple got some troublesome news in the 12^th week of her pregnancy-that there was a strong possibility she would deliver a baby with Down’s Syndrome.  The husband, Shub Debgupta, started WiserTogether after they faced the decision of undergoing an invasive but highly accurate procedure that could spur a miscarriage or wait for an ultrasound that would not be risky but much less conclusive.  WiserTogether addresses expectant parents’ issues that are pregnancy related.

Earlier sites, like WebMD, are more encyclopedic but newer ones like Inspire, PatientsLikeMe and CureTogether are more interactive and case-study oriented.  Some, like Inspire, partner with associations that advocate for patients with various diseases. Sites generate revenue by selling research (without the personal information) to healthcare companies, by recruiting members for clinical trials conducted by pharmaceutical companies, custom searches and subscriptions with premium features.

In the end, the patient is involved in a dialogue….not with the physician…but with other patients facing a similar diagnosis. Hospital marketers should consider following the dialogue on these sites in order to better communicate with potential patients or better yet consider hosting a similar service in their market.

I do believe there is a place for online patient research in our health care system, despite my privacy phobia. I understand the concern of relying on patient-reported data, since we as a species love to present our “best selves” instead of the real ones, but I think the benefit to the group of afflicted is a great one.

These communities could also aim education programs at their members, training them to be better researchers of themselves, to thus, encourage the creation and collection of the cleanest data possible. Let us not forget that gentlemen scribbling down observations in notebooks about their immediate world was the method of many hallowed Great Scientists. You can find the full article I referenced below here.

Amy Farber quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs, after she learned she had the rare and fatal disease.

To her dismay, she says, she encountered a cumbersome research system fraught with obstacles to collaboration and progress — one that failed to focus on patient needs.

She took her frustrations to Dr. George Demetri, a member of her organization’s advisory board (and a professor and cancer researcher at Harvard Medical School) and Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory.

The output of the collaboration between her group and the Media Lab: LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Advocates like Dr. Farber say that online communities have the potential to transform medical research — especially into rare diseases like hers that lack the number of patients needed for large-scale studies and rarely attract research financing from the drug industry. Also, she said, it empowers patients to contribute, ask questions and help lead the way to discoveries.

“Patients have been a tremendously underutilized resource,” she said.

Supporters of this model — sometimes called crowd-sourcing or open-source research — call it democratization of research and say they are pioneering new models that put patients in control of their data and build bridges between researchers, patients and their doctors. They say these methods are far cheaper and faster than traditional research, which has high start-up costs and relies heavily on clinicians.

Still, some experts are skeptical. Questions abound about how these sites will guarantee patient privacy; whether patients fully understand what it means to share their medical information online; whether private businesses should have to follow the same strict patient protection rules that govern most researchers; and the quality problems of user-generated data.

In June, the Belgian pharmaceutical company UCB announced a partnership to build an online epilepsy community with PatientsLikeMe, among the first private companies to develop a platform for data sharing by patients. PatientsLikeMe, based in Cambridge, has as members tens of thousands of patients who contribute detailed information about their diseases, drugs, doses and side effects.

Genetic companies have also taken up patient-driven research. The Silicon Valley company 23andMe, for example, started a program this summer called “Research Revolution.” People can buy a stripped-down version of 23andMe’s genetic service, which gives people DNA information on ancestry and risk for certain diseases, for $99 and then contribute their genetic data toward research into the disease of their choice.

The company plans to store the genetic profiles of thousands of people to use for research internally and in partnerships with other companies. “We call it research 2.0,” said Linda Avey, a founder of 23andMe. “It’s the Wikipedia approach versus Encyclopaedia Britannica approach.”

Private companies like 23andMe and PatientsLikeMe are not bound by the same patient protection rules that govern traditional medical researchers who receive federal financing. Company leaders say they have detailed patient privacy statements and ethics policies.

I know that many pharma brand marketers are constrained by their own regulatory people who will not let them participate in social media programs or even monitor the conversation happening all around them. Well here is an example of one company doing just the opposite.

UCB, headquartered in Brussels with a U.S. presence in Georgia, just announced a partnership with PatientsLikeMe (PLM) to create an online epilepsy community that enables patients to track the daily issues they confront living with the disease such as controlling their seizures and achieving treatment goals. The social community aspect should encourage patients, caregivers and researchers to share information with each other and help industry learn more about the disease and treatment experiences.

According to Medical Marketing & Media, UCB and PLM are working cooperatively to create a pharmacovigilance platform that will monitor the site for adverse events (only those associated with UCB products), which will then be reported directly to the FDA. No personal or identifiable information will be sent to either the FDA or UCB without the permission of the patient.

UCB is the first pharma company to partner with PatientsLikeMe to launch a patient community; the epilepsy community is expected to launch in early 2010

I have often said that it is only when those in the C-suite take social media seriously that things will happen. Kudos to UCB’s CEO who championed this initiative. In the press release announcing the initiative he said, “UCB has a longstanding commitment to improving the lives of people living with severe conditions. This partnership is exciting because for the first time, patients will be able to contribute their experiences and real-world data to ongoing epilepsy research.”

PatientsLikeMe, réseau social de patients, annonce le lancement d’un partenariat avec 23andMe, société de génétique personnelle en ligne, dans le domaine de la Maladie de Parkinson.

Ce rapprochement n’est pas une surprise au vu des orientations récentes prises par les deux sociétés.

D’un côté, 23andMe, qui commercialise des kits de profilage génétique, a annoncé en mars 2009 la création d’une communauté autour de la Maladie de Parkinson.
L’objectif est de réunir une cohorte de 10.000 personnes atteintes de cette maladie neurologique afin d’explorer les bases génétiques de la maladie. 2000 personnes avaient rejoint la cohorte un mois après.

De l’autre côté, PatientsLikeMe est le réseau social de patients de référence nord-américain, rassemblant des patients souffrant de divers affections neurologiques et psychiatriques. En avril 2009, PatientsLikeMe annonçait la possibilité d’inclure des données de génétique dans les profils membres dans la communauté SLA.

Cette annonce est à mon sens révélatrice de l’impact du web social (“AndMe et “LikeMe”) sur les approches de recherche médicale en seulement quelques années (PatientsLikeMe créé en 2004, 23andMe en 2006).
C’est le patient qui devient de l’initiateur de la recherche en prenant la décision d’intégrer un réseau en ligne, d’y partager des informations sur sa maladie, et d’accéder à ses informations génétiques.
L’adhésion des patients étant un point clé de la réussite d’un tel projet de recherche.

Il faut bien sur poser la question de la pertinence scientifique de l’approche, en particulier celle des tests génétiques en accès libre, je renverrai ici aux conclusions, réservées, de l’Inserm dans son analyse collective de janvier 2009.

[23andMe sur biogeekblog] [PatientsLikeMe sur biogeekblog]

Apparently proven by science! A study from Taiwan that administered a self-reporting tool to about 600 college students found they felt “better social connections”

• sense of greater social integration
• an increase in social bonding
• social bridging

Not all that surprising as this is just another variation on well worn advice of sharing of problems and worries :a problem shared is a problem halved. There is historical research that supports this base don personal writings (the diary for instance) and even when the content is made more public

when people share their innermost thoughts of their moods or feelings with others through writing, they may gain greater social support and improve their social relationships and feelings of connectedness

Especially important when people blog on personal challenges and int he case of a friend of mine ePatientDave (his blog and twitter feed) he described his blogging and ability to share the experiences efficiently as a big benefit to the his healing process as well as the therapeutic effect of sharing knowledge learned with others and learning from others in similar circumstances. It has clearly been so inspiring for him that he’s started up another work related blog – No Lines, No Waiting that offer advice on getting the most out of your time including age advice for employment in the downturn. There are many other support networks and infinitely more available than they used to be in the days of visiting your local hospital in search of the photocopied list of support groups!

Patient’s Like Me is a great Place to Start assuming it has a group for your area of interest but if not as in all cases these days – Google is Your friend to finding a relevant support group to join

Do you know any others that are helpful starting points – if so please post comments and links

El otro día hacía referencia a la utilidad de Internet -grupos de apoyo en forma de chats y foros- para los pacientes de psoriasis. Un ejemplo más de cómo las llamadas herramientas de la Web 2.0 provocan en los flujos tradicionales de comunicación.

Las mejoras en la comunicación pueden hacer referencia a los profesionales de la salud o, como hemos visto, a los pacientes. En esta entrada haré referencia de nuevo a este último grupo.

El pasado día 4 de diciembre BusinessWeek publicó el artículo Health 2.0: Patients as Partners,  en el que se decía que Internet se ha convertido en una gran sala de consulta médica. Una encuesta del Pew Research Center encontró que el 80 % de los adultos que usan internet en EEUU (113 millones de personas) buscó información relacionada con la salud en 2006 en este medio. Desde hace años los enfermos, sus familiares o amigos, han buscado información y consejo en blogs, en los foros u otros medios digitales. Ahora se ha dado un paso más, lo que llaman Salud 2.0. Se añade, además, una novedad: hay grupos dispuestos a invertir capital.

Por lo general, antes de la aparición de Internet la información fluía de arriba abajo. Los profesionales, los investigadores, las empresas farmacéuticas decidían lo que los pacientes y su entorno debían saber. Hoy esto ha cambiado.

Una de las experiencias más interesantes es la de PatientsLikeMe. Se trata de una comunidad en línea que surgió cuando en 1998 a Stephen Heywood, hijo de John B. Heywood, profesor de ingeniería mecánica del MIT, le diagnosticaron esclerosis lateral amiotrófica (ELA). La primera reacción de la familia fue informarse a través de Internet. Encontraron abundante información sobre la enfermedad, pero casi nada procedía de personas afectadas, y la poca que hallaron estaba muy dispersa.

El hermano de Stephen, James Heywood, abandonó sus estudios en el Instituto de Neurociencias para crear una fundación contra la ELA. Los dos hermanos crearon en 1999 la “ALS Therapy Development Foundation”, compañía de biotecnología sin ánimo de lucro. La lucha de la familia contra este tipo de esclerosis se recogió en el libro His Brother’s Keeper, y por el documental So Much So Fast.

Más tarde, en 2004, James Heywood, otro hermano, y Jeff Cole, se unieron para crear una página web para los afectados de esta enfermedad con el objetivo de que pudieran monitorizar sus progresos a la vez que contaban sus historias personales. Este fue el origen de PatientsLikeMe.

La idea significaba un nuevo enfoque distinto del habitual: información médica de pacientes para pacientes. La página pronto tuvo éxito y se abrió a otras enfermedades de carácter crónico (esclerosis múltiple, parkinson y VIH/Sida. Los enfermos introducen su “historia clínica”, sus síntomas y sus tratamientos, y una aplicación les permite hacer un seguimiento de la evolución. También pueden seleccionar a pacientes de perfil similar, ver qué tratamientos siguen y los resultados que han obtenido con los mismos.

Otro detalle que hace diferente la iniciativa es que se ha buscado un modelo de negocio. De ahí el interés de BussinessWeek. Cuando se habla de datos médicos personales siempre se asocia a la confidencialidad y secreto.  En este caso es todo lo contrario. Hay privacidad, pero hasta cierto punto. Las historias de cada paciente incluyen multitud de datos que pueden ser de gran interés para varios grupos: investigadores, instituciones científicas, empresas farmacéuticas, aseguradoras, etc. El negocio consiste en vender esta valiosa información tras un proceso en el que se suprimen los datos personales de cada enfermo. Es decir, los interesados pagan por disponer de un enorme repositorio de datos difíciles de conseguir por otros procedimientos. Una de las primeras consecuencias es la aceleración de  los tiempos de investigación; por ejemplo, reunir datos de pacientes reales mediante cuestionarios distribuidos por todo el país, sería un proceso costoso en lo que a tiempo se refiere. El sitio también media entre los enfermos interesados en someterse a ensayos clínicos y los laboratorios que los ofrecen.

El grupo ha recibido apoyo financiero. Al principio fueron CommerceNet y Omidyar Network (el fundador de eBay). Después ha sido Collaborative Growth & Seed LLC e Invus, LP.

Esteven Heywood, en principio el origen de todo esto, falleció en septiembre de 2006. En estos momentos el número de comunidades ha crecido hasta la cifra de dieciséis, agrupadas en: Neurological Conditions, Neuroendocrine Condictions, Mod Conditions e Inmune Conditions, es decir, problemas de tipo neurológico, neuroendocrino, de inmunidad y de estado de ánimo. El número de participantes era hace unos meses de 23.000.

Se trata, pues, de una experiencia novedosa desde muchos puntos de vista, que ha nacido gracias a las nuevas posibilidades tecnológicas. Los resultados parecen contentar a todos los que intervienen. En pocos años se ha dado un salto cuantitativo y cualitativo importante. De foros, chats y grupos, se pasa a una comunidad totalmente organizada. Vale la pena seguir con interés su evolución, máxime cuando puede haber aspectos negativos, que no he encontrado mencionados.

Captura parcial de pantalla del sitio web

Technorati Tags: Patientslikeme, Salud 2.0, Redes sociales, Pacientes, Historia de la medicina

When our drugs, medical devices and wellness tools become smart, and when the resulting personal health information is linked to mobile and internet-based systems, who or what is going to control all that?  We conducted a poll to find out what people think the use and control of such personal information will look like ten years from now.

The poll was done on the LinkedIn business social network. First, a few major caveats. LinkedIn provided a very quick and easy way to poll (e.g., posting to completion was done in just a few hours), but the tool has some big limitations. The poll is small (54 responses) and not statistically significant because they place payment requirements on larger polls.  In addition, the wording length, and therefore the ability to convey the full meaning of an answer, is severely constrained by the LinkedIn tool.  Still, it was fun to obtain such fast results, and they are interesting. You can find the complete results here, including analysis by respondent title, company size, job function, age and gender (a LinkedIn membership is required).

Our goal was to contrast the current use of personal health data (controlled by providers like the Mayo Clinic) with three possible futures–control by consumer and health services-focused companies (like Visa does today for similarly sensitive financial information), control by the individual (like LinkedIn and Facebook allow us to do today for our personal relationships), and a bleak, out of control situation (like FEMA during Katrina).  55% of those polled think they will be in control of their personal health information in 10 years.  Another flaw in this poll is that we are asking the opinion of people who have self-selected themselves into an individual control-based social networking site…and so the results in this population are perhaps not so surprising.  But even this endorsement of the future health-empowered individual was tempered by 40% who thought the situation would look either similar to today (like Mayo Clinic) or worse (like FEMA).  Only 3% thought the future of our health information looked like Visa.

There are some interesting nuggets in the demographics behind the poll results.  People from medium sized companies had the most mixed responses: 44% Mayo, 22% Visa, 22% LinkedIn, and 11% FEMA.  Do these companies struggle the most with our current healthcare system and appreciate complexities that will shape and limit the future that others do not?  In the age demographic, the older the respondent, the less likely their answer was for a future that looked like the provider control of information we see today: 33% of age 18-24 bracket, 20% of age 25-34, 16% of age 35-54, 0% of age 55+. As we get older and increasingly confront disease and health challenges, do we recognize the need to control our health information more and not rely on institutions?  In the gender demographic, 36% of women vs. 15% of men thought our health information future looked like FEMA!  Do women see our healthcare system in ways men do not because they have a different window on their own care and that of their children and elderly parents?  If so, isn’t it critical that women have an increased voice in the development of health policy and new health innovations, services and products?

Interesting questions that this little poll can only prompt but not answer.   If it is true that the future of our personal health information is around individual control, this will require significant changes in legal protections for information privacy and use, new products for storing, manipulating and sharing this information, portability between provider-based electronic medical records and personal health records, and numerous other new and improved things.  The first generation of many of these tools exist today and are exciting. 

With the proliferation of sites where people discuss all aspects of their diseases and conditions, it was inevitable that patients would talk about and even rate their medications and therapies. In the recently released CyberCitizen Health™ v8.0, Manhattan Research reported finding almost 9,000 reviews of Zoloft and over 5,500 of Seroquel on DailyStrength. Other sites mentioned in the study were iGuard and PatientsLikeMe.

I went to iGuard. If you manage or work on a pharma brand, you should take a look. The site features information, discussion and ratings for brand name and generic drugs. It was founded in 2007 by a former executive of Quintiles to “change the way that doctors, pharmacists, researchers and patients communicate about drug safety.” As a test, I looked at Plavix. Besides the basic information you would find on most drug info sites, there was many iGuard-user generated statistics. According to the site, there are over 13,000 patients tracking Plavix who, on average, have provided a Plavix satisfaction score of 7.9 (out of 10) and effectiveness score of 7.7 (out of 10). Other data:

• 28% of patients experience side-effects on Plavix
• <1% of patients experience SIGNIFICANT side-effects on Plavix
• 94% of patients are confident that the good things about Plavix outweigh the bad things
• 16% wish they were told more about this product before they started it

This is followed by pages and pages of comments and questions. I was impressed by the sheer quantity of postings.

Another site I found is called Medications.com. They claim to have tens of thousands of reviews on nearly 15,000 drugs. Here, though, I was a bit suspect because they do not disclose who runs the site. I searched the “About Us” section and found no specific people associated with Medications.com. That strikes me as odd. Still it is a worth a look to see what people taking your meds are saying.

BusinessWeek published an article on December 4th called “Health 2.0: Patients as Partners” which looks at patient engagement in health. The story focuses almost exclusively on PatientsLikeMe which has garnered a great deal of press already.

More interesting was a slide show they compiled profiling 23 other “patient power” sites ranging from big names like GoogleHealth and Microsoft HealthVault to start-up patient networks like CureTogether (focused on helping patients and researchers connect) and Disaboom (for people with disabilities). Also listed were established, high powered healthcare institutions providing quality online resources like Mayo Clinic and MD Anderson Cancer Center.

There is nothing in the article that will be new to those who read this blog. However, its inclusion in a mainstream media outlet like Business Week signals that the movement is gaining momentum and possibly wider acceptance.

In a previous article, Web 2.No More, I wrote about how the current economic conditions are moving us into a new web life cycle. Away from Web 2.0 and into Web 3.0 where the leading web applications will focus more on solving critical problems rather than creating love connections.  In that post I wrote:

Health 2.0 applications like Sermo, infoMedMD & PatientsLikeMe are in their infancy but they’re quickly providing patients all over the world with medical research, information and patient outreach – services that previously were only available via costly doctor visits. Online medical applications were definitely slow to adapt Web 2.0 technologies, but I think they’re some of the first players in Web 3.0. Interactive medical data applications used not for online enjoyment (or making friends) but rather to educate people in an attempt to make their lives better and healthier. 

Health 2.0 is the commencement of this new web cycle and over time we might discover that there was years of overlap between Web 2.0 and Web 3.0. Technology and ideas evolve. Some still adapt the old ways while others are pushing ahead. The current economic conditions calls for the immediate change in definition, valuation, focus and efficiency. Some will make the jump from 2.0 to 3.0, others won’t make it out and many more are just being born.

The recent market fiasco has everyone wondering whether Web 2.0 is alive or dead? The technology is indeed still alive (and advancing) but the focus is changing towards Web 3.0.

When the internet bubble burst in the early 2000s it acted as the dividing line between Web 1.0 (the original web) and Web 2.0. Web 2.0 didn’t commence the day after the bubble burst but rather it evolved over time with the rise of search, social networking, blogs, online videos and user generated content. Whereas Web 1.0 was about putting offline information (books, news, brochures) online, Web 2.0 is about sharing that information via social networks, blogs, online video, social messaging, etc. Web 3.0 will evolve with the integration of all this information into deeper analytical studies of online (and human) interaction, consumption behaviors & consumer data. A move more towards the semantic web.

Not only do I think that Web 3.0 will be about the quantifying of Web 2.0’s user generated data but I believe the focus (of web applications) will change.

In business, they’ll take a more active role in utilizing social networks and messaging platforms to communication with clients. This online interaction is efficient, effective and measurable, which provides corporations with analytical interaction to quantify and measure customer feedback like never before. The web has been evolving in this direction but the recent economic mess will force firms to embrace this technology now. The need to cut costs and be more accountable will propel the web towards Web 3.0 much faster than anticipated. 

The second main change from Web 2.0 to 3.0 will be about focus. This past month has seen two monumental events. The financial collapse of the world economy and a historical election that broke centuries of racial inequality in the United States. Obama’s message was all about change and not only will there be change at home but also a movement towards changing the world’s perception of us. This means instead of meaningless applications that rate whether you’re hot or not there will be a movement towards uniting the online industrial western world with developing nations. Online video has already opened up our eyes to injustice around the world but it’s only the start. The tools of Web 2.0 will evolve to help all nations be self sufficient, energy independent (via new energy technology) and environmentally friendly.

Web 2.0 gave us the technology to test the effectiveness, success and power of online interaction. Global information, worldwide interaction & third world participation opens up a world of possibilities to both developing and industrialized nations. I already see the global need for western medical information with infoMedMD. Many of our visitors come from developing nations that likely don’t have access to quality medical care. With infoMeds, developing nations (with online access) can receive Western medical advice almost as if they specifically asked a doctor for a diagnosis.

Health 2.0 applications like Sermo, infoMedMD & PatientsLikeMe are in their infancy but they’re quickly providing patients all over the world with medical research, information and patient outreach – services that previously were only available via costly doctor visits. Online medical applications were definitely slow to adapt Web 2.0 technologies, but I think they’re some of the first players in Web 3.0. Interactive medical data applications used not for online enjoyment (or making friends) but rather to educate people in an attempt to make their lives better and healthier. 

Whatever the third phase of the web is called it’s very likely that it has just begun. The current economic conditions have forced technology companies (and the venture capitalists funding them) to rethink their business models, focus their ideas and think of the next big thing. The third phase of the web will take everything that we’ve learned during Web 1.0 & 2.0 and make it better.

Ben Heywood, co-founder and President of PatientsLikeMe, recently participated in live chat session (see transcript) hosted by the World Health Care Congress. I was particularly interested in his several comments related to the value of his site to disease management programs now sponsored by health plans and other health care organizations.

I think one of the areas we have expanded into earlier then we thought was in the payer/health plan space. Payers are looking at PatientsLikeMe as a lighter-weight disease management platform. A peer-based DM, sort of like an online version of AA (the most successful peer-based DM program around) . . .

The discussions we are having is around offering PatientsLikeMe as a service to their (health plan) members – we have seen some strong anecdotal evidence that patients are using healthcare more efficiently by learning from other patients experiences and data.

We think that using our site makes patients more compliant – we are working on several pilots to prove this out. . .

Our business model is really about engaging industry into these communities – so one consideration as we look at new diseases is for whom this will help make better products. First and foremost, we need to make communities that help patients – so that is always our first consideration. . .

We get a lot of amazing feedback from out users from… depression patients who say using the site keeps them out of the hospital to a patient in MS that said that the site saved her life as her doc over-prescribed one of her medication. . .

This morning’s Wall Street Journal has an article, first page – Section B, highlighting the growing impact of the financial crisis on the IT industry. The enterprise software powerhouse, SAP, shocked investors earlier this week when it warned that it would not meet its 3rd Qtr target, citing slowness in the mid-market. Another tech company, RightNow Technologies (provides an SaaS CRM solution) also announced that they are seeing delays on invoice payments. And getting back to the WSJ article, VC firms are having a tough time raising capital and are have begun telling start-ups to batten-down-the-hatches for a long slow period. Some have even gone on to say to their start-ups that if you have a bank credit line, draw it down now as it may not be there tomorrow.

Impact on Healthcare IT (HIT) Spending

Adding to the tight money situation for businesses of all sizes, regardless of market sector, decreasing consumer spending and the increasing burden of healthcare costs shouldered by consumers will directly impact healthcare. Small to mid-size physician practices will be particularly hard hit as consumers forgo visits. This will, in-turn, slow technology adoption for the foreseeable future and result in drastic consolidation among HIT vendors.

And for those of you holding out for one of the presidential candidates to drop a boat-load of money into HIT, don’t hold your breath. During a debate last week at Harvard, two noted healthcare economists each representing one of the candidates (they were both senior advisors to teh candidates) were quite clear in stating that any promises of large investments in HIT will have to wait while other priorities take precedent.

Despite all the doom and gloom, occasionally one sees a glimmer of brightness. IBM this week pre-announced earnings (to quell market concerns) that were positive. And this morning, I received a similar announcement from WebMD, wherein they state that advertising revenue for the third quarter is up substantially, year over year. Like IBM, clearly WebMD wants to get out in front with positive news to quell investor fears rather than wait till their scheduled 3rd Qtr conference call on Oct. 30th.

Quick Assessment:

• Mid-market HIT vendors targeting physician practices will suffer. Expect consolidation, bankruptcy filings and even shuttered doors. Vendors targeting large practices and hospitals will rely heavily on maintenance and service revenues as customers look to control spend by canceling or delaying large projects.
  
• There are far to many integration platform vendors targeting the RHIO/HIE market. Most of these will fail. Those that succeed will have a strong, existing client-base (not heavily reliant on RHIOs) with a clear annuity stream to carry them through what will be a tight market for the next 2-4 years. Those with a clear technological advantage will likely be acquired.
  
• The consumer-facing HIT vendors will have little success going directly to the end consumer. Thus, their go to market strategy must migrate to a B2B2C (business>business>consumer) model. In pursuing such a strategy, they must show clear and demonstrable savings to the business sponsor. Creative financing and cost sharing approaches will increase to fund such deployments.
  
• Internet-based, consumer-facing health solutions, particularly anyone claiming to be “Health 2.0″ company must go beyond the hype and focus on delivering some real value that they can monetize. PatientsLikeMe appears to be on the road to success, far too many others to list do not. A real shake-out will occur here as these start-ups struggle to raise cash.
• Whether one likes it or not, clearly, there is money in advertising but tapping that source will require a company to show that they have the visitors and are growing in number of impressions. That growth should exceed overall growth in health-related search. WebMD is one clear example, Waterfront Media another and eMarketer lists a few more.

Quick Note:  Just found this article over on CNET that takes  hard look at Web 2.0 companies with the potential to blow-up.  Hmmm, if one were to make a similar one for the Health 2.0 apps sector, who would You put on the list?

Following is an excerpt from a story I wrote that has just been published in Australian Doctor:

It’s not just doctors who are sharing stories on the Internet. In the US, a plethora of sites lets patients post observations on their disease progress and management, and search for similar people and post comments, ask questions, form relationships, etc. Sites in this area include Daily Strength (www.dailystrength.org), Caring.com (www.caring.com) and Trusera (www.trusera.com).

The one getting the most publicity at the moment is PatientsLikeMe (www.patientslikeme.com), which boasts as members thousands of people with diseases such as mood disorders, Parkinson’s disease, multiple sclerosis and amyotrophic lateral sclerosis. Founder David S Williams III says patients get more value from recording their health information when they share results with each another.

Williams says one of the most unexpected things that has happened on the site is the interaction springing from the comments members leave on each others’ profiles. “In many ways comments are not central to the site — forum and private messaging support more in-depth conversations.”But PatientsLikeMe has found that members read other people’s profiles to help them reach an informed person to ask advice and offer personally acquired knowledge to people who will benefit from it.

For patients who want to add a bit of expert advice to the mix, Organized Wisdom (www.organizedwisdom.com) offers a medical search service hand-crafted by ‘guides’ appointed by the site owners. The guides are a mixture of physicians and experienced web users. Sites such as DoublecheckMD (www.doublecheckmd.com) operate like consumer medicine information on steroids — they provide every possible adverse reaction, using natural language recognition to allow consumers to search medical texts and match symptoms with the drugs they’re on.

And of course no description of patient-centred Health 2.0 sites would be complete without mentioning doctor rating sites. One of the newest sites, Vitals.com (www.vitals.com), includes an algorithm extracted from physician peer reviews, while Xoova.com (www.xoova.com) offers a directory, ratings and online appointment bookings.

Un exemple concret de contribution d’un réseau social de patients à un projet de recherche clinique : PatientsLikeMe.com, réseau constitué autour de maladies neurologiques (voir mon post précédent à ce sujet), met en avant sur sa page recherche clinique l’essai FREEDOMS II sponsorisé par Novartis dans la sclérose en plaque dans sa forme récurrente-rémittente.

Les visiteurs sont dirigées vers un site web spécialement mis en place leur proposant un “prérecrutement” en ligne et indiquant les centres ouverts, ici exclusivement sur le territoire US.

L’essai FREEDOMS II sur clinicaltrials.gov

PatientsLikeMe dans le NY Times : suite

http://epidemix.org/blog/?p=243

Repéré aujourd’hui via epidemix.org, un long et intéressant article sur PatientsLikeMe.com dans l’édition du 23 mars du New York Times Magazine.
L’auteur en est Thomas Goezt de Wired Magazine.

PatientsLikeMe.com est un réseau social crée en 2006, développé à l’origine autour de personnes atteintes de SLA (dont le frère du fondateur était atteint) qui s’est depuis étendu à d’autres affections neurologiques, maladie de Parkinson et sclérose en plaques, et plus récemment au VIH et aux troubles de l’humeur.

représentation graphique de la communauté de PatientsLikeMe.com
Copyright 2008, The New York Times Company

PatientsLikeMe.com compte aujourd’hui plus de 9.000 membres, essentiellement aux USA et au Canada. Outre un format classique de forum de discussion, les participants peuvent partager des données telles qu’évolution des symptômes, traitements et prendre une part active à des recherches sur leur maladie.

Thomas Goezt passe en revue dans son article les aspects de risques pour les patients (modifications de traitement sans avis médical) et de confidentialité des données personnelles (voir le positionnement du site par rapport à la législation HIPAA).
Il met aussi en avant plusieurs aspects particulièrement intéressants dans le positionnement du site : son rôle d’outil de communication entre patients mais aussi entre le patient et le médecin, et aussi le rôle que peut jouer une telle communauté pour faire avancer la recherche.

Est aussi évoqué le business model et donc le financement du site et notamment les liens qui peuvent se développer entre ce type de réseau social et l’industrie pharmaceutique, là encore décrite comme frileuse à collaborer.

(Ce post complète le compte rendu de la session Médecine2.0 du Médec, Denise Silber ayant fait référence a PatientsLikeMe.com dans sa présentation, ce que je n’avais pas signalé dans mon compte rendu !).

I recently came across an online community that reminded me of Tokoni (where people connect through experiences) – the social network that we talked about in Clarke’s class. This social network – PatientsLikeMe – is based on a similar concept of connecting through shared experiences, but is more niche and has a clearer purpose, something that we talked about with the ladies from Tokoni. With PatientsLikeMe, you can share your experience about a certain medical condition that you have, connect with others who have the same medical condition, and learn from each other. I can see how this social network can become a great resource for people – both as an information aggregator and as a source of emotional support.

……….Rachelle Goh

In another interesting example of how individuals can collectively produce a useful social good (much like ideas of monitoring bird flows, wikipedia, appearances or constructing an urban rain catchment area with cisterns on people’s houses), and developing patient data on rare diseases (PatientsLikeMe), Project BudBurst is aiming to chart climate change by the dates on which various leaves and flowers bud in your area.

They are targeting native U.S. tree and flower species and then putting the results into the BudBurst database. Since budding is a phenological event it is sensitive to climate change and can help track the dispersed impact of such. Through this effort “scientists can use it to learn about the responses of individual plant species to climatic variation locally, regionally, and nationally, and to detect longer-term impacts of climate change by comparing with historical data.”

(Project BudBurst is operated by the University Corporation for Atmospheric Research (UCAR) and a team of partners.)