The State of Health 2.0 and Participatory Health -- Patients Get Smart About Managing Health Jane Sarasohn-Kahn, MA, MHSA THINK-Health and Health Populi blog Matthew Holt, MS, MA Conference and The Health Care Blog Tuesday, March 2, 2010 1:00 – 2:00 pm HIMSS10 Annual Conference & Exhibition Georgia World Conference Center, Georgia Ballroom 1 Atlanta, GA THINK-Health
Conflict of Interest Disclosure Jane Sarasohn-Kahn, MA, MHSA Matthew Holt, MS, MA
Americans’ Use of the Internet and Social Networks for Health Pew and Manhattan Research Confirm the Trend Source: Social Life of Health Information, Pew Internet & American Life Project, June 2009; Health 2.0 on the Rise – 35% of U.S. Adults Use Social Media for Medical Information, Manhattan Research, October 2009 - 35% of U.S. adults used social media for health and medical purposes in 2009, according to Manhattan Research - These 80 million consumers create or consume content on health blogs, message boards, chat rooms, health social networks and health communities, and patient testimonials. Pew: Percentage of Internet Users and Adults Who Have Looked Online for Information About a Specific Disease or Medical Problem, 2002-2008 Manhattan Research: Health 2.0 Use is Growing Among American Health Consumers
eThis, That & The other vs. Web 2.0 Adapted/stolen from Jane Sarasohn-Kahn
WWW, born 1994-5
Integrated from data sources
“ Webmaster” regulated
Institutional publishing standards
e, later i
Web 2.0, nee. 2003-5
Forums, Groups, Discussions
Microblogging (Tweet, Tweet)
r, z, x, 2.0
Periods, but no vowels allowed
“ ...Social software and lightweight tools that promote collaboration between... stakeholders ” - Matthew Holt and Jane Sarasohn-Kahn “ ... all the constituents focus on health value…improving safety, efficiency and quality of healthcare” - Scott Shreeve "health 2.0 is participatory healthcare... we the patients can be effective partners in healthcare .” - Ted Eytan
What is “Health 2.0” Matthew Holt’s best guess at the constituent parts
Personalized search that looks into the long tail, and cares about the user experience
Communities that capture the accumulated knowledge of patients and caregivers – and explain it to the world
Intelligent tools for content delivery -- and transactions
Better integration of data with content
And not just a maybe….
Technologies fusing as patients increasingly guide their own care
Now, let’s focus on Participatory Health… User-generated health care Users connect to providers Partnerships to reform delivery Data drives decisions and discovery
Total U.S. Health Spending in 2007 = $2.2 trillion Source: Centers for Medicare and Medicaid Services
The New Health Care Consumer November 2004 THINK-Health
“ In our country, patients are the most under- utilized resource , and they have the most at stake. They want to be involved and they can be involved. Their participation will lead to better medical outcomes at lower costs with dramatically higher patient/customer satisfaction.” Charles Safran, MD, President, American Medical Informatics Association From his testimony before the Subcommittee on Health of the House Committee on Ways and Means
Participatory Health The U.S. Health Environment
75% of $2.2 trillion spent on health in U.S. is for chronic disease = $1.7 trillion
1/3 of chronically ill people leave docs’ office feeling confused about next steps
Kleinke’s Oxymoron: the U.S. “system” is fragmented
Patients, too, don’t adhere to treatment regimens
Limited data liquidity ( EHR adoption will improve).
The search for transparency, value and empowerment in health
> “DIY” care (esp. in recession – KFF tracking poll data).
The Ideal Connection: Continuous, Tailored, Actionable
Support for full range of patient’s health activities
Regular monitoring of patient status
Ongoing adjustment of regimen by providers-to-patients based on status
Interpretation of patient data vis-à-vis both (1) clinical and (2) personal goals
Support for ongoing learning
Timely communication to patient of tailored advice
Health companies’ Web sites TV News coverage Articles in magazines Web sites for specific brands of medication Films or documentaries Online message boards, forums or newsgroups Articles in newspapers Radio news coverage Personal blogs Social networking websites Corporate and product advertising Web-based video sharing sites Net becoming more important Net becoming less important Source: Edelman Health Engagement Barometer, October 2008 Engaged Patients See Conversations with Docs Will Become More Important Along with Personal and Health Expert Channels
Leverage technology platforms consumers already like using in other aspects of their lives (go mobile!)
HIPAA, 2010-style (the new opt-in)
New metrics to measure ROI – a Whole New Mind-set (see Pink)
How connected do you really want to be with your health citizen-consumers?
In2009, Health Citizens Got More Engaged About Health Data
Regina Holliday paints mural dedicated to her husband’s death from cancer and denial of medical records: “73 cents a page and a 21-day wait)
Founding of HealthDataRights.org: health data as a human right
“ We the people have the right to our own health data…have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost…have the right to share our health data with others as we see fit…”
e-Patient Dave reveals Google Health’s data glitches in his own case of kidney cancer.
Participatory Health Projects Emerging Areas and Examples
Diabetes care: Center for Connected Health, Partners, Boston
Heart disease: Cleveland Clinic and Microsoft HealthVault
Crohn’s Disease: WellApps’ GI Monitor
Cancer: ACOR clinical trials registry and community
Wellness, weight management: Sparkpeople, TheCarrot, Keas, among many others.
Q: How Interested Would You Be in Using an In-Home Medical Device That Could Help You Know What You Needed to Do, and When, to Improve Your Health or Treat a Health Condition?
2 in 3 Americans Are Interested in Home Monitoring Technologies to Improve Health or Manage a Condition 64 % Extremely interested Not at all interested Interest ranges from 51% in the youngest generation (Gen Y) to 76% in the oldest generation (Seniors); 71% of consumers who sought care for a chronic condition in the past year are interested Source: Deloitte’s 2009 Survey of Health Care Customers
Will GE, Intel and Mayo Clinic Bring Good Things to Participatory Health?
3 consumer-facing brands come together to pilot home monitoring
200 Mayo Clinic patients: high-risk, over 60 years of age, managing chronic conditions
Utilizing Intel’s Health Guide enabling upload of measurements and videoconferencing between clinicians and patients
Goal: to assess efficacy of patient-provider connectivity for home monitoring among a high-risk patient group.
For an in-depth look into Health 2.0, read… The Past and Future of Health 2.0 Published January 2010 Download the exec sum at http://www.health2con.com/health-2-0-advisors/report-the-past-and-future-of-health-2-0/
For an in-depth look into this phenomenon, read… Participatory Health: Online and Mobile Tools Help Chronically Ill Manage Their Care Health Care Meets Online Social Media Download white paper published in September 2009 by California HealthCare Foundation at http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=134063
Are you ready to participate in participatory health? Questions? For further information, please contact: Jane Sarasohn-Kahn [email_address] @healthythinker on Twitter www.think-health.com Matthew Holt [email_address] @boltyboy @health2con on Twitter thehealthcareblog.com THINK-Health