Moire from Health 2.0..... in real time
Dr. Jeff Livingston from Irving Texas was featured in a film. It showed how they use Twitter and Facebook to reach out to their patients.
They are using social media to connect with their patients. Their audience of Teen women want to be online. Check out Macarthur Obgyn on Facebook.
The practice found that patients were more comfortable to come to the practice when they could discover their doctor online. They are also referring their friends. The practice found that the more information they put out the more informed their patients are. Better choices result. They have created educated and engaged consumers in a group that is not typically so engaged.
Now for the first part of online communities.:
Part 1. - Data Mining and Discovery Platforms.
Part 2 - Integration with the delivery system
Part 3 - Everyday life platforms.
Part 1 -
Ben Haywood CEO Patients Like Me
Gilles Frydman, founder , ACOR
Gideon Mantel,, Co-Founder and Chairman of First Life Research
Gilles is well known to HealthCamp. ACOR has a rich set of narratives that originated in the world of listservs. Narratives is another form of data. ACOR has 70,000 members living with cancer. Narratives are just the hardest form of data to analyze. Narratives need to come together with other data streams.
Genomics will have a profound effect on the treatment of cancer.
Patients Like Me has grown alongside Health 2.0. Patients Like Me has become a platform. Ben Hayward talked about the 80,00 strong network of members. It is representing the Patients voice to the Health Care industry. The experience of members describes their journey in dealing with a critical disease.
Ben Hayward gave a preview of the Patients Like Me Dashboard. The demo looked at Fibromyalgia. 18,831 patients. 1600 patients taking a Cymbalta.
PatientsLikeMe Landscape - allows analysis of the patient experience.
They are able to compare clinical trial results against actual patient results.
Further drill down is available that allows correlation between different feedback. e.g Body Mass v Fatigue.
NIH and other groups spent $10M to prove the same results that the PatientsLikeMe ALS community discovered through their own ad hoc trial.
Gideon Mantel - First Life Research
10Billion user generated posts on medical related issues on the Internet. Growing at 40% per year.
First Life mines user generated content on English language sites around the Internet.
Converting narrative in to medical insights.
600Million postes from 15M patients. 9,000 medications.
The example has 25,000 posts on Singulair.
These posts can be analyzed from the perspective of Drug interactions, Drug Switching, Drug Effectiveness and Drug comparisons.
This search tool provides the ability to dig in to side effects and provide percentage incidence for comparison FDA approvals don't do comparisons to other drugs. First Life Research through user generated content and self reporting provide that comparison capability.
First Life Research doesn't mine everything.
PatientsLikeMe is excluded from the search because they are balancing privacy. Their site is blocked from scrapers and robots. It is also part of their business model where the data can be sold to companies that want access.
As Gilles pointed out: only 5% of the Internet is visible on the Internet. Many of the rare diseases are discussed in private.
A big question - How do Communities share with each other - not just inside their community.
Part 2: Integration with the delivery system
MArgaret Rukstalis, Clinician Investigator, Geisinger Health System
Howard Steinberg, CEO dLife
Neil Bacon, Managing Director, iWantGreatCare
First Geisinger and dLife talked about Integration.
dLife is focused on Diabetes. One in every $5 spent on Diabetes
The proposition: Online engagement can improve self management of Type II diabetes.
The population in the study. Over 65, primarily men with High School education.
In the study patients were invited to a control group or to dLifeG.com
They found that 115 got involved in dLifeG against 53 in the control group.
dLife comes at Diabetes from a consumer perspective.
dLife TV has 0.5M weekly viewers.
- Personalized web site.
- Weekly newsletters.
- IVR outbound calling - linked to themes.
Despite low education levels and low levels of PC Literacy they still had more than 52% moderately to hyper engaged in the program.
The dLife group after 3 months were more motivated with fewer drop outs and still continue to attend appointments.
Neil Bacon - iWantGreatCare
A UK-based service that aggregates information about measuring the outcomes of treatment:
iWantGreatCare harness real time information to evaluate quality of care.
The site provides encouragement to doctors that support transparency
Health Care Providers get reporting tools to compare the same information in real time.
Part 3: Everyday life platforms.
Manny Hernandez, President, Diabetes Hands Foundation
Chris Cartter - General Manager, MeYou Health
Josh Elman, Product Manager, Twitter
Alex Ressi, Founder, TweetWhatYouEat
The simplest food diary that you ever keep.
Post a message: Direct message: d twye Turkey Sandwich, oatmeal cookie, potato salad:300
Why Twitter. Because it was already integrated in to my daily life.
Open Food diaries . See what others are eating
Forums - eg. to find help in losing weight.
A Personal diary
The platform will reference what you have eaten before. OTherwise it uses a crowd source calorie value database.
A subsidiary of HealthWays.,
A facebook App : Change Reaction
Get people to pledge to doing one healthy behavior each week. Then invite friends to join in.
Yet another Facebook App. Because that is where the people are. Social Games are a huge fast growing segment.
A social Game:
players choose lifestyle goals. Choose a goal and take on missions.
The idea is to get people to carry out real life missions. e.g. reorganize your kitchen to move unhealthy food out of sight. Your facebook friends become your support team.
Reactions from Josh Elman, Product Manager, Twitter
It is great that people are using Twitter and Facebook to integrate with their daily life. The community you share with provide support and purpose.
It is more public when making a commitment.
Twitter provides a way to generate user contributed databases.
Chriss Cartter: most People Know What to Do. The trick is getting you to do it.