9:00 - 9:40 amSunday, September 7
LK 102
What patients and families want: Using technology to transform stories into change
LK 102
What patients and families want: Using technology to transform stories into change
Principal Communication Researcher and Evaluator, AIR
Director, Client-Facing Technology, American Institutes for Research
Mighty Mouth, Mighty Casey Media LLC
CEO and Founder, Clear Health Costs
Patient and family stories of their engagement in health and health care (or their lack of it) often fill online community sites, but rarely become used collectively to create the change that patients... Read more


Patient and family stories of their engagement in health and health care (or their lack of it) often fill online community sites, but rarely become used collectively to create the change that patients and families want. Three e-patients--Casey Quinlan, Jeanne Pinder, and Dave deBronkart—collected engagement stories from patients and family caregivers through the American Institutes for Research’s (AIR) virtual Center for Patient and Consumer Engagement, using the stories to present a compelling view of what patients and families want to a convening of policymakers, clinicians, administrators, professional and patient organizations, researchers and technology experts that gathered in Washington DC to advance patient and family engagement in health care. 

In this panel, two of the e-Patient authors, along with an expert in engagement technology for social change and the Managing Director of AIR’s Center for Patient and Consumer Engagement, discuss the opportunities for transforming patient and family caregiver stories of engagement into clear and actionable advances in patient and family engagement. They explore how technology can assist in collecting, synthesizing, and strategically disseminating stories of successful and unsuccessful achievement of health and health care goals by patients and families to change agents who, armed with a clear mandate, can lead to increased funding, transparent costs and procedures, improved quality and safety, and a health care system that accomplishes the goals and outcomes that matter most to patients and families. 

Panelists include e-patient co-investigators Casey Quinlan and Jeanne Pinder, Tom Workman, who manages the virtual Center for Patient and Consumer Engagement (www.aircpce.org) and Paul King.  Bio for Paul King is below.

Paul King is Head of Client Technology at American Institutes for Research. His experience includes founding, growing, and eventually selling a successful electronics and information technology company; holding roles as divisional CIO and Managing Director for 2 fortune 50 financial services organizations; and as the Director of Technology for the US Program at the Bill and Melinda Gates Foundation. Paul has been act8ively involved in creating engagement-based technologies such as Global Forest Watch (http://www.globalforestwatch.org/). Educated at Trinity College in Dublin, Harvard Business School, Carnegie Mellon, and American University he holds a BSc in Electronic Engineering, a BSc in Computer Science, and an MSc in Global IT management. 

Thomas Workman is the principal communication researcher and evaluator in AIR’s Health Program. His role is to develop, design, and conduct the formative and evaluative research for communication activities and campaigns and develop metrics and data collection methods to evaluate multichannel communications activities. He leads AIR’s Center for Patient and Consumer Engagement, and has worked on a variety of projects related to involving patients and consumers in health care research, service, and policy decisions for the Patient-Centered Outcomes Research Institute, the Agency for Healthcare Research and Quality (AHRQ), and others.

Dr. Workman has worked in the field of Communication Studies for the past 30 years as a consultant, trainer, college professor, researcher, and practitioner. Much of his work has focused on community and stakeholder engagement for health policy and health research. He served as the communication coordinator for a community-based alcohol prevention project funded by the Robert Wood Johnson Foundation at the University of Nebraska, and then as the translation/production section lead for the John M. Eisenberg Center for Clinical Decisions and Communications Science at Baylor College of Medicine for the Effective Health Care Program, funded by the Agency for Healthcare Research and Quality. As an assistant professor of Health Communication at the University of Houston-Downtown, he co-founded the Center for Public Deliberation, conducting community deliberations on health care reform.

Dr. Workman sits on several national boards and faculty panels in the area of college health and alcohol/drug abuse prevention, and is on the Editorial Board for Health Communication.

Paul King is a senior technology executive with over 25 years of experience as a global technology leader.

At the age of 24 he founded Microware, a technology company which developed the world’s first software based Electronic Point of Sale (EPOS) terminal.  After selling Microware, he spent several years working with teams at the University of Canterbury (Kent), Imperial College London, Carnegie Mellon, DARPA, and Intel in the fields of artificial intelligence, image processing, and parallel supercomputer design.   He has held roles  as a divisional Chief Information Officer at several global financial services organizations, including Marsh & McLennan Corporation and JP Morgan Chase; and as Head of Technology for the US Program at the Bill and Melinda Gates Foundation in Seattle. Current interests include technology innovations in the environmental, health, and education fields with a particular emphasis on community engagement through digital storytelling.

Mr. King has been published internationally and has been a regular speaker at global conferences.  He is a member of the Institute of Directors (UK), the IEEE, the ACM, the British Computer Society (UK), and is a Chartered Information Technology Professional. In addition to primary degrees in Computer Science and Electronic Engineering, he holds a Master of Science in Global Information Technology Management from Kogod Business School. He has also attended Harvard Business School and Carnegie Mellon University for postgraduate management studies and is a certified executive coach.

Casey Quinlan a storyteller, speaker, media strategist, and writer with an extensive background in broadcasting, theater, and stand-up comedy. She believes that it – business, and life – is all about the story.

Casey studied theater and performance at the University of San Francisco, American Conservatory Theater, HB Studios, and the American Comedy Institute.

From there, she launched a two-decade career in broadcast news and sports, covering stories for Dateline and Today, presidential campaigns, wars, presidential campaigns that turned into wars, NFL Playoff games, Stanley Cup hockey, and the NBA.

Just days before Christmas in 2007, Casey was diagnosed with breast cancer. She used the experience to write a book about managing medical care, Cancer for Christmas: Making the Most of a Daunting Gift, which became an Amazon Best Seller in October 2009.

Jeanne Pinder founded clearhealthcosts.com in 2011, to bring transparency to the health-care marketplace by telling people what stuff costs.
Clearhealthcosts recently launched a groundbreaking project crowdsourcing health-care prices in California with two public radio partners, KQED in San Francisco and KPCC/Southern California Public Radio in Los Angeles, with funding from the John S. and James L. Knight Foundation.
The company has also won support from The Tow-Knight Center for Entrepreneurial Journalism at the City University of New York Graduate School of Journalism; The Ford Foundation via the International Women's Media Foundation; and the McCormick Foundation via J-Lab at American University, as well as several angel investors. 
Pinder founded the company shortly after volunteering for a buyout from The New York Times after nearly 25 years there as a reporter, editor and H.R. exec. Before The Times, Pinder worked at The Des Moines Register, The Associated Press and her family's paper, The Grinnell (Ia.) Herald-Register. 
A Russian and Slavic linguistics major in college and graduate school, she  used to live in what was then the Soviet Union, a place almost as opaque as the heath-care marketplace. 
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