Health 20 And Participatory Health

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 Have no real or apparent conflicts of interest to report.

Objectives Describe the current state-of-the-art of Health 2.0: definitions, tools, continuum Illustrate how web-based tools are helping support patients and providers in managing chronic conditions Define the emerging Participatory Health movement and how it will impact health providers Identify challenges and opportunities for HIMSS attendees in patient-centered care that's enabled through web 2.0 technologies.

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

Source: Globescan/BBC/Reuters 2006

eThis, That & The other vs. Web 2.0 Adapted/stolen from Jane Sarasohn-Kahn WWW, born 1994-5 publishing, searching, reading Content Management Syndicated Subscribed Internally created Integrated from data sources “ Webmaster” regulated Institutional publishing standards Prescribed branding Dominant letters e, later i Dash optional Web 2.0, nee. 2003-5 uploading, sharing, collaborating, searching Social networks Blogs Wikis Forums, Groups, Discussions Video/content sharing Microblogging (Tweet, Tweet) Sharing Tools Community policing Posting guidelines Dominant letters 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

SEARCH: Gets deeper and more personalized Presentation Deep Search Real Time Answers

Doctors Hospitals, Procedures Clinical Trials SEARCH: Answers. one example is Matching, Rating & Recommendation

COMMUNITIES: Providing support, answering questions, aggregating data & tracking outcomes

Emergence of Consumer-Focused Tools Personalized Analytical Supporting Decisions Enabling Transactions

TOOLS: Unlocking databases with new interfaces and analytics

Social Networks Tools Search Transaction Data Content

Health 2.0: What’s coming next? Integration of the three constituent parts (search, communities, tools—all mash up) The data utility layer allows easy inclusion of same data between different services (liquidity) ( You may have heard of HealthVault, Google Health ) Greater diversity in data types The emergence of new “unplatforms”

Unplatforms For Applications Over channels Intermingling of Applications Integration of Data

Intermingling of applications sharing Unplatforms

Integration of data across Unplatforms

A Continuum of Health 2.0? User-generated health care Users connect to providers Partnerships to reform delivery Data drives decisions and discovery

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).

“ Participatory Health is the New Woodstock” Breaking the traditional mode of doctor-patient relationship relying on patient passivity Patients actively engage in their own health care partnering with providers and trusted experts Continuous, cooperative, coordinated.

What’s Driving the Health Citizen Toward Participatory Health? An online, 24x7 world for more and more people People DIY and project-manage travel, financial services, entertainment online > social networking online overall; health has followed other consumer verticals > consumer-directed care: >OOP costs drive engagement 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 Rinse, repeat!

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

Health 20 And Participatory Health

Participatory Health – Opportunities to/Barriers for Providers Opportunities Engage, collaborate with consumers Greater tailoring improves engagement, outcomes, trust Compete more effectively vs. other providers Leverage technology platforms consumers already like using in other aspects of their lives (go mobile!) Barriers Aligning incentives Engaging clinicians Clarifying regulations 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.

Positive Prospects for Participatory Health Consumer demand for more control given >OOP costs, trust issues, access to information Mobile and telehealth: phones as health tools, iTunes health apps fast-growing category, bullish 2010 Consumer Electronics Show and Barcelona Mobile World Congress Reimbursement Growth of patient-centered medical home Medicare payment models for care episodes/bundles Health reform: paying for value-based, quality care Employers seek value-based health plan benefit designs Look outside of traditional health care for disruptive innovations.

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

Health 20 And Participatory Health

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