Health Datapalooza IV: June 3rd-4th, 2013 Unlocking Clinical & Claims Data by Giving Consumers Access: Blue Button Plus For Data Holders Moderator: Ryan Panchadsaram, Senior Advisor, White House Office of Science and Technology Policy Speakers: Kym Martin, Three-time cancer survivor Jon R. Cohen, Chief Medical Officer, Quest Diagnostics Craig Lipset, Head of Clinical Innovation, Pfizer Mark Savage, Director of Health IT Policy and Programs, National Partnership for Women & Families Consumers can be engaged, active participants in their own health and partners in reducing health care costs. But first, they need access to their own personal health information, and they need tools and services that use this information to help them make better choices. The panel will bring together payers, providers, and other data holders who will discuss the value proposition for sharing data with consumers. They will demonstrate Blue Button Plus, which makes it easy for data holders to share personal health information with consumers and their applications in a standardized, automated format.

1. Unlocking Clinical & Claims Data by
Giving Consumers Access: Blue
Button Plus For Data Holders
Health Datapalooza IV
June 3, 2013

2. Agenda
Moderator:
• Ryan Panchadsaram, Senior Advisor, White House Office of
Science and Technology Policy
Speakers:
• Mark Savage, Director of Health IT Policy and
Programs, National Partnership for Women & Families
• Kym Martin, Three-time cancer survivor
• Jon R. Cohen, Chief Medical Officer, Quest Diagnostics
• Craig Lipset, Head of Clinical Innovation, Pfizer
• Q&A (15 minutes)
6/11/2013
Office of the National Coordinator for
Health Information Technology
1

3. 6/11/2013
Office of the National Coordinator for
Health Information Technology
2
Over 1 million people across the country
have downloaded their health record
In 2010, Department of Veterans Affairs
starts the Blue Button initiative
Now over 88 million Americans can download
their health record from a portal
(CMS, Dept. of Defense, Aetna, and United)

4. Worldof DataHolders
Providers: Hospitals and Practices
Health Plans
Labs and Diagnostics
Pharmacies and Pharmacy Benefit Managers
Devices and Apps

5. PainPointsforDataHolders
Undefined Structure: Simpler to keep data
unstructured or in custom formatsX
Inconsistent Asks: Historically access to this
data has been from one-off-asksX
No Secure Transport: No defined, widely
adopted way to securely transport dataX
Not Seamless: Current applications require
too much manual effort by consumersX

6. 6/11/2013
Office of the National Coordinator for
Health Information Technology
5
68 committed organizations
defined the next version of BB

7. 6/11/2013
Office of the National Coordinator for
Health Information Technology
6
Structure
1
Electronic EOB
C-CDA
Transport
2
Direct
Automation
3
Triggers

8. WhatBlueButton+looks like forDataholders
(HIEs,Providers,Payors,etc.)
ANY
Destination
of
Consumer’s
Choice

9. WhatBlueButton+looks like forDataHolders
Advantages:
Enables you to securely deliver a payload to
a destination of a consumer’s choosing.
Using patient bundles simplifies exchange.

10. WhatBlueButton+looks like forDevelopers
andPatients

11. MeaningfulUseStage 2 andBlueButton+
Blue Button+ gives specific guidance to EHR
companies in meeting the V/D/T requirements.
Structure Consolidated CDA (C-CDA)
Section & Fields Described in Meaningful Use 2
Transmit Direct Protocol (SMIME/SMTP)
Certificates Ability To Exchange Certificates “Ad Hoc”
Transmit Frequency Send once
Certificates Certificate Bundles
Transmit Context In message body
Transmit Frequency Send on change, automation
MU 2
regulations
requires these
for all certified
EHRs
Required for
Blue Button+

12. 6/11/2013
Office of the National Coordinator for
Health Information Technology
11
Implementation Guide
http://bluebuttonplus.org

13. 6/11/2013
Office of the National Coordinator for
Health Information Technology
12
Implementation Guide
http://bluebuttonplus.org
C-CDA Scorecard
http://ccda-scorecard.
smartplatforms.org
Direct Reference
Implementations
Patient Anchor Bundle
http://secure.bluebuttontrust.org
Training and Resources
http://healthit.gov

14. Organizations on the Path to Blue Button+ Today
CurrentAdoption

15. 6/11/2013
Office of the National Coordinator for
Health Information Technology
14

16. From HIPAA to Health Datapalooza:
A Consumer Perspective on Data Access
Mark Savage
Director of Health IT
Policy and Programs
Health Datapalooza IV
Washington, D.C.
June 3, 2013 15

17.  HIPAA Privacy Rule (2003): Patients have a right to
inspect and copy their health data (with limited
exceptions) within 30-90 days of the request
 HITECH Act of 2009: Patients have a right to obtain
their health data in an electronic format where
providers use or maintain the data in an EHR, and to
have providers transmit the data to designated third
parties
 Regulations in 2013 now require access within 30-60 days
HIPAA: Access in 30-90 Days
16

18.  Meaningful Use Stage 1, core requirements (2010):
 Electronic copy of health information (including diagnostics test
results, problem list, medication lists, medication allergies), within 3
business days
 Clinical summaries for each office visit, within 3 business days
 Electronic copy of discharge instructions, within 3 business days
 Meaningful Use Stage 2, core requirements (2012):
 Ability to view online, download, and transmit health information,
within 4 business days
 Clinical summaries for each office visit, within 1 business day
 Patient-specific educational resources
 Secure messaging to communicate on relevant health information
Meaningful Use Program:
Access in 1-4 Business Days
17

19.  Meaningful Use Stage 3, proposed core requirements in HIT
Policy Committee's request for comment:
 Ability to view online, download, and transmit health
information, within 24 hours of visit or 4 business days for
information not generated within a visit
 Clinical summaries for each office visit, within 1 business day
 Patient-specific education resources, with materials in at least
one of the top 5 non-English languages
Meaningful Use Program:
Access in 1-4 Business Days
18

20. HIPAA: Access in 30-90 days
Meaningful Use Program: Access in 1-4 Business
Days
Blue Button Plus: Access at the click of a button
Blue Button Plus:
Access in Real Time
19

21. In a major nationwide survey released last year by the
National Partnership for Women & Families:
Of respondents/patients with online access to doctors with
EHRs, 80 percent use it.
They were consistently more positive about the perceived
value of EHRs, and about trust in EHRs.
Of those whose doctors use paper medical-record systems,
nearly two thirds (65%) said online access is "very" or
"somewhat" important to them.
National Partnership for Women & Families, "Making IT Meaningful: How
Consumers Value and Trust Health IT" (Feb. 2012).
Do Patients Care? YES WE DO!
20

22.  Patient-generated health data: We must add U to V/D/T.
 Usability: Blue Button Plus improves upon Blue Button, but
we must accommodate wide ranges of literacy with health
information and literacy with health information technology.
 Access does not necessarily mean understanding and use.
 No barriers: Access in language and interoperability with
assistive devices are critical for over 58 million people who
speak languages other than English at home, and over 56
million people with a disability.
Where we need to go next
21

23. For more information
Find us:
www.NationalPartnership.org/HIT
Follow us:
www.facebook.com/nationalpartnership
www.twitter.com/npwf
www.twitter.com/CPeHealth
Contact me:
Mark Savage
Director of Health IT Policy and Programs
MSavage@nationalpartnership.org
(202) 986-2600
22

24. Kym Martin, MBA
I have Experience
I am Engaged
I seek Empowerment
“Knowing the Score”
by Regina Holliday

25. 1983 Summer Plans
• Fun with friends
• Beach trips w/ beau
• Softball pitching camps
• Work at McDonald’s
• Scouting out colleges
1983 Summer Reality
• Hodgkin’s Lymphoma IIB
• Multiple surgeries
• Barium cocktails
• CAT scans,
• Chest x-rays
• Lymph angiogram
• 40 rounds mantle radiation

26. Hodgkin’s
SurvivorDecember 1999
True Love
April 2000
Hodgkin’s
scare
December 2004
Melanoma
in situ
September 2012
Breast Cancer
Stage IIB
March 2001
BIG
Surprise!
June 2000
Kaua’i
Wedding

27. Healthier Patients
Healthier Planet

29. Kym Martin
kym@kymmartin.com
Thank You
“Trinity” by Regina Holliday
Please visit
www.thewalkinggallerydc.com
Help raise awareness of truly
patient-centric care
Please visit
www.ACMImimi.org
Help advance music & medicine

30. Unlocking Data to Transform the Role of Patients
From Subjects to Participants in Clinical Research
Craig H Lipset
Health Data Initiative IV, June 3 2013
The Pfizer
Blue Button®
Project

31. The Pfizer
Blue Button
Project

32. The Pfizer
Blue Button
Project
only 5% participate in clinical research
hundreds of pieces of data generated
data aggregated for research
very little given to patient in return
a subject of research
yesterday

33. The Pfizer
Blue Button
Project
first of its kind project
enable patient to download her
individual clinical data at study end
provide patient with lay language
summary of study results
improve her health & decision-making
share data with her treating clinicians
a participant in research
today

34. The Pfizer
Blue Button
Project
Role of the
patient and her
data in
radically
accelerating
the
development
of new
medical
breakthroughs

35. The Pfizer
Blue Button
Project
low participation a challenge to all research sponsors
(universities, government, and pharma)
less than 4% of US physicians participate
in clinical trials as an investigator
only 7% of Americans say their physician has talked
to them about research participation
lack of engagement and participation delays
the development of new medicines

36. The Pfizer
Blue Button
Project
Unlocking data
transforms the role
of the patient in research
When given access and control
over their health data,
91% of patients are willing to share
medical information for research

37. The Pfizer
Blue Button
Project
Earn Trust By Sharing First
Use Data and Information to Transform the
Role of the Patient in Clinical Research
Individual Study DataStudy Results

38. The Pfizer
Blue Button
Project
In 2012,
Pfizer Completed
over 100 clinical trials
with over 50,000
patients
including over
37,000,000
data points*
If Successful…
beyond U.S.
additional
cutting-edge
data types
(such as precision medicine)
*significant investment in clinical trial data to ensure
the highest quality for regulatory scrutiny

39. The Pfizer
Blue Button
Project
Partnering with
the Health Data
Community
Enable patient
use of existing
BB tools
Contribute new
data types for
BB developer
community
Explore
together how
to help patients
realize the
greatest impact

40. The Pfizer
Blue Button
Project
“…I, the patient, can share whatever health
information I want. It can be scrubbed or
not. I share this with you to help others
and aid in the aggregation of data. And all I
ask of you, is that you do the same for
me. I ask you to share the data and
conclusions that you have reached…
We are no longer subjects. We are
partners in care. Let patient’s help, that is
all we ask.”
Regina Holliday
“Subjects”
September 5, 2011
http://reginaholliday.blogspot.com/2011/09/subjects.html

41. The Pfizer
Blue Button
Project
Acknowledgments
Jennifer Wulff
Munther Baara

42. BlueButtonPlus– Co DesignChallenge
Are you a patient
or caregiver? Tell
us how you want
to use your data.
Share ideas
through June 11
http://ideas.healthtechhatch.com