Social Networks for Health
CRM can learn from Health 2.0
Ms. Mei Lin Fung
G-CEM Global Adviosr
This article is exclusively written for G-CEM and published in the Nov 09 newsletter. It can be viewed in full with graphics here
Diabetes is an epidemic in India and China. In 2006 and 2007 I was in discussion with Johnson and Johnson's CRM strategists for their medical devices for diabetes patients in these countries, each with over 1 billion people, of whom an estimated 10-15% would suffer from diabetes - a number that is larger than the entire populations of most countries. Through those discussions, we began to perceive the opportunity for technology to really make a difference - in saving many lives and improving the health and quality of life of millions by augmenting and enhancing personal and social relationships.
In San Francisco in September 2009, the first Health 2.0 conference was held in the same month as the Medicine 2.0 conference was held in Canada. I found many advances since 2007 and will summarize them in a overview "helicopter survey" of the Health and Medicine 2.0 arena. Completely separately and independently of the world of CRM practitioners, medical and health practitioners are coming up with surprisingly similar findings to what we have been discovering over 20 years of experience in CRM.
Health 2.0 and Medicine 2.0 can be visualized as a series of interlocking circles as shown above. Michael Yuan1 defines it as "putting consumers back in the driver's seat of their own care and giving tools to doctors and providers to make this happen". These tools are made available through the use of web technologies that bring patients, providers and researchers together online to achieve improved communication and better results.
Health 2.0 - a compact definition: Health 2.0 = (Me + MD)raised to the power of Us
created by Mark Scrimshire. Note: MD signifies a Doctor of Medicine
Wikipedia's entry for Health 2.0 includes a useful analysis of who is involved and Health 2.0 and how they are using the information, including references to examples of each in the academic press.
We can examine one of the Health 2.0 websites to understand what this means to a man, woman or child in China. "CureTogether is an English language, US-based site that helps patients share their symptoms, treatments, and triggers for over 300 different medical conditions, with the aggregate data being pooled for research into finding cures. For an individual family, health 2.0 means better information, support for a child with a rare disease, medication reminders for a busy family, integration with hospital records so you have better access to all your medical information." explained Alex Carmichael, founder of Cure Together in an exclusive Interview for G-CEM readers.
This diagram showing CureTogether's offerings makes clear that YOU, the health consumer are at the core of Health 2.0, placing more responsibility on YOU to be proactive. Google found that Health was the most requested search. I heard anecdotally, about 10-20% of ALL searches on Google related to health. Adam Bosworth, formerly in charge of Google Health left Google to start Keas, an action-oriented site that gets you to take charge of your health tracking better data, saving money by staying healthy.
In considering cost effective diabetes management, I have been recommending that CRM architects examine the methods of US-based Weight Watchers a model for a social network for diet and exercise. Over the last 6 months, I participated in a weight loss study as one of the study participants. Within a group of people that met weekly, each of us tracked a wide variety of data every day: how many steps we walked, our weight, what exercise we took, and every piece of food or drink we consumed. It was not easy. We tracked on the Internet, on paper and reported in each week face to face, in ways that reminded me of the Weight Watchers methods. Over 6 months, all of us lost weight together, weight which we had not managed to lose individually for years. Our weekly meetings were full of laughter and camaraderie, facilitated by the gentle encouragement of our session leader who firmly but kindly checked in with us as a group each week and encouraged us to keep up with the tracking and reminding us to set our goals each week. Above all, she had faith that we would achieve the weight loss. The face to face social network I was part of, made a big difference in helping me lose 10 pounds of the weight which I had put on after the birth of my daughter.
With Health 2.0, the communities are more online than face to face. It must be a human survival instinct, as people know they need to get together to increase their chances of survival, especially if they are in serious health situations. Diabetes has a social network built around a blog: DiabetesMine which as you can see below has interesting articles, supported by advertising.
The other section of Diabetes Mine is a simple list of discussion groups. These discussion groups allow social networks to develop in discussion of topics from the point of view of Diabetes patients, where they share experiences and what they have learned with one another.
Why is there such an uprising of consumers in the Health field? Why is Health 2.0 making such an impact? There are lessons for China and the rest of the world to learn from the cautionary tale of how western medicine and the existing models of scientific research, publication and academic standing, have resulted in the emergence of Health 2.0. In this fundamental arena of human well being, where patients have trusted doctors to give objective unbiased care, that trust has been broken by the conflicts of interest that are now receiving painful publicity in the field of medicine.
There is a blog by a patient with cancer, called Dave. The blog has proved so popular, because people want to find out about their diseases from an authentic point of view2. Dave made a presentation in October at the ePatient Connection on "Authentic Value: Being Known in e-Patient Communities". You can watch a 4 minute video narrated by Dave (in English) which can be seen on his blog for October 27, 2009 at http://patientdave.blogspot.com/
Earlier in the blog, Dave quotes from an article in ZDNet by journalist Dana Blankenhorn who writes "Drug money has completely corrupted the process by which we treat disease." in his year end 2008 article titled "Is Medical Research a Madoff Fraud?". The New England Journal of Medicine is one of the most prestigious medical publications in the world, its editor is Marcia Angell who wrote a devastating critique of the pharmaceutical industry in the New York Times Review of Books in July 2004 and again in the same publication in a book review in January 2009 she wrote
"The problems I've discussed are not limited to psychiatry, although they reach their most florid form there. Similar conflicts of interest and biases exist in virtually every field of medicine, particularly those that rely heavily on drugs or devices. It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of TheNew England Journal of Medicine." Marcia Angell
Going back to our diagram, we can now introduce the final component of the picture, the new science that is emerging from this chaos: an Open Transparent Participatory discipline of Medicine, called Medicine 2.0
Dr. Michael Yuan says3 "Healthcare spending in the US is $2.5 trillion dollars in 2008, accounting for 17.6% of the GDP and still growing at a rate 150% of GDP growth. For individuals and employers in the US, healthcare cost has become a crushing burden, and yet the system delivers mediocre care for most people. Real healthcare reform that both reduces cost and improves service is a pressing priority."
Let's turn to a definition of Medicine 2.0:
"Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation4, collaboration, and openness within and between these user groups. Gunther Eysenbach's random research rants
This definition is cited from the website of the first Medicine 2.0 congress and there are two relevant presentations from there which I would like to highlight for a Chinese audience:
A recent study examined Use of the Internet for health-related information in Japan by Takahashi Yoshimitsu In Japan, cell phones are also widely used to access the Internet. But how Japanese people use cell phones for health information seeking practice on the Internet is unknown. 1200 people were surveyed with the following demographics:
-- Mean age 46.3, approximately equal numbers of males and females
-- 19% obtained at least a college education
-- 41% had at least US $66,500 as household income
-- 24% used PC for health information
--6% used cell phone for health information
Japanese people use cell phone for the purpose of communicating with their family and friends rather than for collecting health information. While this may also be the case in China today, the widespread use of the cell phone compared to the availability of the PC, may make the cell phone the best target device for companies who wish to bring Health 2.0 applications to China.
Twitter an instant micro-blogging service accessible from PC or cell phone that allows people to post, read, and exchange information was in widespread use in the current H1N1 outbreak. A scientific study was made of the Twitter posts or "tweets" exchanged during the H1N1 outbreak to see if useful or harmful information was being spread. The researchers used a system called Infovigil system to identify and archive over 300,000 over a 2 week period spanning April/May 2009. The breakdown of a random selection of English language tweets indicates responsible use in over 98% of those analyzed.
- 46% news posts overall
- 37% of all posts quoted news articles verbatim and provided URLs to the source.
-19% public health education
-18% H1N1-related humor
- under 2% could be identified as possible sources of misinformation.
Concluding remarks on Health 2.0 and Medicine 2.0
Patients and families are reconsidering their trust in doctors now they have access to direct sources of information. They are starting to pool together their health data records and are beginning to use techniques developed in our field of CRM like datamining. The fields of Health 2.0 and Medicine 2.0 are moving quickly due to the health reform movement underway in the US as costs have exploded. I am glad to end this paper with the concept that is the central critical key to success in CRM, Health 2.0 and Medicine 2.0 - human relationships.
Alex Carmichael of CureTogether says "I think a major key to healthcare will always be conversation and relationships. Health 2.0 adds a new dimension to this conversation, bringing people together who might not easily come together otherwise. Tracking is another key to healthcare, because by having a greater understanding about our bodies, we can more quickly decide what needs to be done. Whether it is done in a compassionate way depends on the individuals involved, but I see tracking as a wonderful complement to the doctor-patient relationship."
"The beauty of Health 2.0 is that it combines precision with relevance, statistics with collaboration. People are tracking themselves, but also sharing their data, and people are deciding what is important for researchers to study, in addition to committees locked in ivory towers." says Carmichael, adding
"I think certain aspects of health cross cultures more fluidly than others. Policy decisions will be dependent on culture, but human bodies are essentially the same. The way people respond to treatments, the symptoms for a given disease, the genes responsible for different predispositions, this is all information that can be shared across cultures for the benefit of overall global health and research. I'm a big believer in the power of self-tracking to positively impact the future of health, by individually bringing awareness to our bodies and by the collective intelligence that emerges when this information is shared."
Thinking back to my discussions with the China and India CRM strategists for diabetes management, there are so many more tools that they now have than were available just two years ago, thanks to Health 2.0 and Medicine 2.0. The diabetes epidemics in their countries no longer have to be solved by just a few people working very hard on new tools and devices, but by many people pooling their resources in new ways .
Now, isn't that the history of our human civilization summed up in a few words?
1Dr. Michael Yuan is the CEO of Ringful, a personal healthcare startup focused on mobile applications and connections to backend PHR/EHR systems. He is a well-known mobile technologist, enterprise data integration expert, and the author of 5 books from Addison-Wesley, Prentice Hall, and O'Reilly. He has previously worked in various product and technical roles for JBoss, Red Hat, and Nokia
2See Dave's presentation in October at the ePatient Connection "Authentic Value: Being Knowne in e-Patient Communities" The presentation may be accessed at http://www.slideboom.com/player/player.swf?id_resource=106731" id="slideboomPlayer. You can watch a 4 minute video narrated by Dave (in English) which can be seen on his blog for October 27, 2009 at http://patientdave.blogspot.com/
3Venture Beat, October 7, 2009
"Apomediation is a neologism created by introducing the Latin term for "separate, detached, away from." This is the mediation you experience when you read user reviews on Amazon.com or at a movie site, when you notice a number of people you trust using an iPhone, or when the wisdom of the crowd affects your decision-making. Apomediation is guidance generated and available from peripheral mediators who have no or limited power to affect the ultimate decision or access to the service, resource, or information. The current, highly saturated information environment makes apomediation relatively painless, endlessly accessible, and competitive with intermediation for value and attention. Physicians have been moved to a more apomediated role by the preponderance of online information resources. Patients can choose the level of intermediation they prefer, and findings suggest that many patients move from a higher need for intermediation to a desire for apomediation once they have some key facts and have developed competency themselves."
About the Author
Mei Lin Fung works with Oklahoma State University's Spears Business School to offer certificate and performance management programs in business-customer relations. She recently assisted communications firm Avaya in developing an innovative public and private customer relations partnership, honored with the American Society of Competitiveness' Phillip B. Crosby Golden Medallion. Fung was an early pioneer in CRM, having worked with both Tom Siebel, founder of Siebel Systems, and Marc Benioff, founder of salesforce.com in 1988 at Oracle at the very beginning of the CRM industry. Blog: Professionals Earn Customer Trust
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