The State of Health 2.0 and Participatory Health -- Patients Get Smart About Managing Health

Jane Sarasohn-Kahn, MA, MHSATHINK-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 & ExhibitionGeorgia 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 HealthPew 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

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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

“...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

“... 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

"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

SEARCH: Presentation

SEARCH: Deep Search

SEARCH: RealTime

Doctors Hospitals, Procedures Clinical Trials

SEARCH: Answers.one example is

Matching, Rating & Recommendation

COMMUNITIES:Providing support, answering questions,

aggregating data & tracking outcomes

Search & Online Communities

+

Emergence of Consumer-Focused Tools

1. Personalized

2. Analytical

3. Supporting Decisions

4. Enabling Transactions

TOOLS:Unlocking databases with

new interfaces and analytics

Social Networks

Tools

Search

TransactionData

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

Unplatforms for applications

Unplatforms over channels

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

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“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

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Participatory HealthThe 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).

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• “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).

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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 coverageArticles in magazines

Web sites for specific brands of medicationFilms 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

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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?

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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 ProjectsEmerging 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

1% 1% 1%2%

8% 8%

15%

22%

17%

25%

1 2 3 4 5 6 7 8 9 10

64%

Extremely interestedNot 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.

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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 athttp://www.health2con.com/health-2-0-advisors/report-the-past-and-future-of-health-2-0/

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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

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Are you ready to participate in participatory health?

Questions?

For further information, please contact:

Jane Sarasohn-Kahnjane@think-health.com

@healthythinker on Twitterwww.think-health.com

Matthew Holtmatthew@health2con.com

@boltyboy @health2con on Twitterthehealthcareblog.com

THINK-Health