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A Different Way of Thinking About Health Information

Monday, August 13, 2012

A consumer walks down the street using a smartphone – but rather than texting a friend, calling home or checking email, she is reporting data that will inform a clinician about the status of her asthma management. Is this scenario real or fantasy?

As Americans grow more and more comfortable with technology in daily life – at work, at home and at play – one wonders why personal technology isn’t more widely used in health care. Patients are frustrated that they can’t access many of their providers through email; that they have to fill out paper forms multiple times, even in the same office; and that they must endure an office visit to their provider to have their progress monitored when they can visit their relatives across the ocean through Skype.

The scenario with the smartphone mentioned above is in fact being tested. However, there are many policy considerations before we “get there” with consumer-generated health information, including the potential need for regulation of mobile apps that transfer health information; dealing with the complexities of integrating patient-generated information into the electronic health record; and melding these advances with “meaningful use” requirements to qualify for federal payments. In addition there are privacy and security issues, including HIPAA compliance concerns.

What other special issues need to be addressed to enable the transmission of patient-generated information to occur effectively? How do these issues align with the key components of meaningful use? Are there programs demonstrating the effective use of patient-generated information? Can they be replicated? What are the principal barriers to more rapid adoption of these types of interactions?

To address these questions and more, the Alliance for Health Reform, the Robert Wood Johnson Foundation (RWJF) and the Bipartisan Policy Center (BPC) sponsored an August 13 lriefing. Panelists were: Stephen Downs, RWJF; Stephen Rothemich, Virginia Commonwealth University; Deven McGraw, Center for Democracy and Technology; and Joy Pritts, Office of the National Coordinator. Janet Marchibroda of the BPC and Ed Howard of the Alliance co-moderated.


 Ed Howard , Alliance for Health Reform , Moderator
 Janet Marchibroda, Bipartisan Policy Center, Moderator
 Stephen Downs , Robert Wood Johnson Foundation, Speaker
 Stephen Rothemich , Virginia Commonwealth University, Speaker
 Deven McGraw, Center for Democracy and Technology , Speaker
 Joy Pritts, Office of the National Coordinator, Speaker
(Click on the camera icon to see a video of the speaker's presentation.)

Transcript, Event Summary and/or Webcast and Podcast

Transcript: Briefing Transcript (Adobe Acrobat PDF), 8/13/2012
Full Webcast/Podcast: A Different Way of Thinking about Health Information

The full webcast and podcast for this briefing, as well as videos of individual speakers' presentations, are provided by Kaiser Family Foundation.

Speaker Presentations

Project HealthDesign Overview (Adobe Acrobat PDF), 8/13/2012
Engaging Patients Using Technology: Legal & Policy Issues Faced by Project HealthDesign Grantees (Adobe Acrobat PDF), 8/13/2012
BreathEasy: A smartphone PHR for patients with asthma (Adobe Acrobat PDF), 8/13/2012
A Different Way of Thinking About Health Information: Patient Generated Data (Adobe Acrobat PDF), 8/13/2012
A Different Way of Thinking About Health Information: Patient Generated Data (PowerPoint), 8/13/2012

(If you want to download one or more slides from these presentations, contact us at info@allhealth or click here for instructions.)

Source Materials

Materials List (Adobe Acrobat PDF), , 8/13/2012
Agenda (Adobe Acrobat PDF), , 8/13/2012
Source List (Adobe Acrobat PDF), , 8/13/2012
Speaker Biographies (Adobe Acrobat PDF), , 8/13/2012

Offsite Materials (briefing documents saved on other websites)

Incorporating Patient-Generated Information to Manage Health (Adobe Acrobat PDF),Project HealthDesign, 6/8/2012
- Testimony of Patricia Brennan
A Brave New World: Regulations and Risks Inherent in the Use of Mobile Health Devices and Applications, Journal of Health Information Management, 8/1/2012
- Labban, Allyson and Clara Cottrell
Know thy health record, Healthcare IT News, 8/3/2012
- McCann, Erin
Lessons from Project HealthDesign, Journal of Health Information Management, 8/1/2012
- McGraw, Deven et al.
Analysis: App-happy Health Care Full of Optimism, Money, Kaiser Health News, 8/1/2012
- Millenson, Michael
First glimpse of meaningful use stage 3 measures, Government Health IT, 8/2/2012
- Mosquera, Mary
5 Ways Mobile Apps Will Transform Healthcare, Forbes CIO Network, 6/4/2012
- Newell, Derek
Q&A: Mostashari on IT and delivery system reform, Healthcare IT News, 6/20/2012
- Pizzi, Richard
Feds Raising Awareness of Patient Rights on Accessing Health Data, iHealthBeat, 8/9/2012
- Pfister, Helen and Susan Ingargiola
Digital Disparities: A Barrier to Health Equity, Kaiser Permanente Institute for Health Policy, 5/2/2012
- Raymond, Brian
Transforming Health Care: The Role of Health IT (Adobe Acrobat PDF),Bipartisan Policy Center, 1/1/2012
Massachusetts E-Health Project Increased Physicians’ Ability To Use Registries, And Signals Progress Toward Better Care, Health Affairs, 7/1/2011
- Fleurant, Marshall et al
Focus: Mobile Health, Journal of Healthcare Information Management, 8/1/2012
Summary of the HIPAA Privacy Rule (Adobe Acrobat PDF),US Department of Health and Human Services Office for Civil Rights, 5/1/2003


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