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 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

2. The Pfizer
Blue Button
Project

3. 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

4. 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

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

6. 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

7. 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
When given access and control
over their health data,
91% of patients are willing to share
medical information for research

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

9. 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*
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)
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

10. The Pfizer
Blue Button
Project
Partnering with
the Health Data
Community

11. 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

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