YouTube funny videos can seem miles away from physicians blogs or patients communities. However the concept of patients/scientists-generated content emerges and develops on Facebook, YouTube and Twitter as well, with contributions spreading from breast cancer storytellings to amyotrophic lateral sclerosis symptoms or chronic headache conditions. This phenomenon depicts the concept of Health 2.0.
Health 2.0 derivates from the term Web 2.0 coined by Dale Dougherty (vice president of O'Reilly Media) and chronicled by Tim O'Reilly who described the concept in the essay, What is Web 2.0: Design Patterns and Business Models for the Next Generation of Software, published in September 2005.
So what are the main aspects described and how can we apply them to healthcare environment?
First of all, when we use the 2.0 extension, service provided has to operate on the web in order to get the bi-directional dimension so that a large community can use it and participate in the debate.
Thanks to this participation, people can enhance the content fed by their opinions and experiences, which drives us to what we call "the wisdom of crowds" or “collective intelligence". This last aspect is key as the user generated contents give value to this 2.0 service, demultiplying sources and strengthening data accuracy.
When it comes the health 2.0, relations take place between patients-to-patients or physicians-to-physicians keeping in mind the quest for transparency, science improvement and benefits for both parts in compliance with healthcare values. And surveys show that the desire to interact is massive, with more than 80% of U.S. adults browsing Internet for health information, and more than 60% French adults according to 2010 Bupa Health Pulse survey.
Beginning with BrainTalk, an online neurology patients community created in 1993 or PsychCentral a mental health website and social network created in 1995, the path is rapidly accelerating with sites such as OrganizedWisdom which could be assimilated as a healthcare Wikipedia or other such segmented social networks designed for Patient Communities, Healthcare Professional Communities and Blogs.
Patient Communities sites (see entire directory) :
Health social networking site gathering communities suffering from amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, and mood disorders. PatientsLikeMe was created in 2004 and privately owned by its founders.
Mix of social networking and genetics supported by community, helping consumers to understand their own genetic information. 23andMe is owned by Google and New Enterprise Associates
Health social networking site gathering communities disseminated worldwide and suffering from Chronic myeloid leukemia. CML Earth was created by Novartis Oncology
Healthcare Professional Communities (see entire directory) :
Online Doctors of Medicine community gathering more than 18 000 members, helping doctors to network with other doctors on a professional and social level. Doc2Doc was created by the publishers of The British Medical Journal.
Online Doctors of Medicine and Doctors of Osteopathic Medicine community, helping professionals to connect and develop opportunities. With a rapidly growing membership of physicians nationwide and more than 300 physician advisors, medical directors, and investors, iMedExchange is driven at all levels to support and promote the interests of physicians. iMedExchange is privately owned.
Online French Doctors of Dentistry community gathering more than 20 000 members, created in 2003 and allowing dentists to manage their network, broadcast surgery cases’ videos, vote for or advise products, exchange about day-to-day matters. Eugenol is privately owned by its founders and associates.
If first patients communities were non profit, the newest created are seeking to be commercial and financed by venture capitalists or pharmaceutical companies, resulting in a wide choice of patients social networks and continuously enhanced functionalities.
The power of user generated content
Is the top to bottom approach of Medicine over? Would Doctors and regulators lose their defender role of information kept secret concerning patient health records? Would Doctors lose credibility on their best expertise as well? Would they be considered less efficient, less reactive, less available, less comforting, less involved in the long and ongoing process induced by living with illness?
Doctors, scientists, pharmaceutical companies or regulators used to let patients know what seemed relevant to their experts (accommodated) point of view. But nowadays, with the overflow of patients increased interactions made immediate and simple, things are dramatically changing, allowing patients to narrate in detail the whole world the life story of their pains, fears, illness experiences documented with photos and protagonists true names.
o Why do patients operate so?
Three reasons can be highlighted:
1- Never be alone with illness again
Whatever the illness whether it’s chronic conditions such as diabetes or orphan diseases such as ribose-5-phosphate isomerase deficiency (the rarest), the need for patients to remain connected is crucial. Why so? Because what better solace and empathy brought to patients than other patients in similar conditions seeking to share their own experiences?
2 – The range of medical knowledge is so wide for one sole Doctor…
…for him to pretend to be expert in all domains or sub-domains, and especially, when it comes to orphan diseases…Besides patients feel it highly useful getting feed-backs from other patients in the same conditions, which may know more about their living disease than their doctors. It’s real life and shared concerns. And this web collective wisdom may demonstrate its superiority compared to an isolated medical school or pharmaceutical R&D department.
3 – Social patients networks will never let you down
Web is a 365/7/24 world, where patients don’t have to wait alone in between doctor's appointments. Patients have daily insights from other patients suffering from the same disease sharing experiences, symptom histories, treatment data relating adverse drug interactions or dosing strategies, new drug trials….and get these information whenever they need them, in the long run and even after they are cured from it.
o What are the benefits for science?
As patients reports spreading on the global web and as social network subjects volunteers for clinical trials, the material for research is greatly growing, leaving commercial interests or barriers far behind. How unpredictable, isn’t it? Talking about health-related matters is not the easiest topic to talk about. But against all odds patients are well inclined to talk about these issues and giving up related privacy, because they benefit from it and what’s more, this flow doesn’t suffer from misinformation. Indeed, as Wikipedia information are almost corrected instantaneously; it goes the same way with health social networks and Association of Cancer Online Resources (ACOR) reported corrections proceeded within two hours.
These aspects encourage a bottom to top approach in medicine and collaboration between patients and researchers, may help to tackle ageing populations health challenges and may be the booster for laws uniformization among countries and reforms as well. Indeed, Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104-191) [HIPAA] address the issue of security and privacy of health data, prohibiting the transmission of patient records to companies and insurance companies but also allowing patients to communicate freely if they want do so.
PatientLikeMe business model relies on this regulatory escape clause, reselling patients data to third parties. And the stunning part is that patients are ready to give this confidentiality up in return for the benefits of networking.
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