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Appendix C Workshop Speaker Biosketches Cindy Brach, M.P.P., is a senior health policy researcher at the Agency for Healthcare Research and Quality (AHRQ). She is AHRQâs lead on cultural competence and sits on a number of cultural competence advisory groups. In addition to her own cultural competence research, she has overseen the development of guides to assist health plans in implementing culturally and linguistically appropriate services and a research agenda for cultural competence in health care. Currently, Ms. Brach is spearheading AHRQâs health literacy activities, coordinating AHRQâs work in developing mea- sures and improving the evidence base, and integrating health literacy activities throughout AHRQâs portfolios. Charles P. Friedman, Ph.D., is deputy national coordinator for Health Information Technology in the Office of the Secretary for Health and Human Services. In this capacity, he serves as the chief operating officer of the Office of the National Coordinator (ONC), working to build collabora- tions in the public and private sectors, and maintain cohesion across the programs that ONC undertakes. In addition, Dr. Friedman is ONCâs lead for planning and communication activities, as well as the Officeâs initia- tives relating to clinical decision support. He also lends his informatics expertise as needed to support activities of the Office. Prior to joining the ONC, Dr. Friedman was institute associate direc- tor for Research Informatics and Information Technology at the National Heart, Lung, and Blood Institute of the National Institutes of Health. From 1996 to 2003, Dr. Friedman was professor and associate vice chancellor 105
106 HEALTH LITERACY, eHEALTH, AND COMMUNICATION for biomedical informatics at the University of Pittsburgh. He established a well-funded program of informatics research and directed the enter- prise-wide effort to develop and deploy integrated advanced information resources across the health sciences center. Dr. Friedmanâs research has focused on how to build information and knowledge resources that make clinicians, biomedical researchers, and health professional students better at what they doâand how to study the effects of these resources. He has also studied and written about how institutions can organize to make optimal use of their information and knowledge resources. Dr. Friedman has authored or co-authored over 150 articles in sci- entific journals. He is the author of a well-known textbook on evalua- tion methods for biomedical informatics. He is a past president of the American College of Medical Informatics and was the 2005 chair of the Annual Symposium of the American Medical Informatics Association. He currently serves as associate editor of the Journal of the American Medical Informatics Association. Dawn Gauthier, M.I.S., is a Web usability designer at PeaceHealth, a nonprofit six-hospital system based in Bellevue, Washington. From 2002 to 2006 she led the design and development of the Web-based Shared Care Plan personal health record (PHR), widely recognized for trailÂblazing many innovative and patient-centered PHR concepts. She also partici- pated in an AHRQ-funded study on how patient-owned PHRs could be used to help maintain accurate medication lists across a community. More recently she has led the introduction of user-centered design and user experience to PeaceHealthâs Web application development lifecycle. Ms. Gauthier holds a Master of Information Science degree, specializing in human-computer interaction, user-oriented information architecture, and interactive design, from Indiana University in Bloomington, Indiana. She currently resides in Bellingham, Washington, with her husband and passionately advocates for user-centered design in all health care pro- cesses, with an emphasis on patient needs and their privacy. Linda Harris, Ph.D., leads the Health Communication and ehealth Team in the U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion (ODPHP). In this role she supervises the management of the National Health Information Center, a congressio- nally mandated source of health information for the public (healthfinder. gov). Prior to her arrival at ODPHP, Dr. Harris was a senior health com- munication scientist at the National Cancer Institute, Division of Cancer Control and Population Sciences where she managed health communica- tion technology research projects, including health systems research in collaboration with the VA. She has over 20 years of experience manag-
APPENDIX C 107 ing information technology/communication research and development projects in public health and in the private health care sector. She has extensive experience architecting, designing, developing, and evaluat- ing information systems for consumers and health professionals. She is the editor of Health and the New Media: Technologies Transforming Personal and Public Health. Her Ph.D. is in communication from the University of Massachusetts. Rita Kukafka, Dr.P.H., M.A., is jointly appointed with the Department of Biomedical Informatics and the Mailman School of Pubic Health (Socio- medical Sciences). She holds a doctorate degree from the School of Public Health at Columbia University and two masterâs degrees, one in health education, and the second in biomedical informatics from Columbia Uni- versity, where she also completed a National Library of Medicine awarded postdoctoral fellowship in medical informatics. Dr. Kukafka maintains an active, funded program of research and publication in public health informatics while being engaged in major leadership roles in the field. Her research is at the crossroads of bio- medical informatics and public health including computer interventions for chronic disease self-management, health promotion and informed decision-making, patient focused electronic health records and personal health records, tailoring health communication, and interactive computer graphics for communicating health risk probabilities to patients. Another area of her research focuses on how theory from the behavioral sciences can be applied to advance our understanding and to improve our capacity to implement information technology systems into health care organiza- tions. She is a member of the American Medical Informatics Association Board of Directors and she is a past chair of that organizationâs Working Group on Consumer Health Informatics. She is on the editorial board of the Journal of Biomedical Informatics, and serves on the editorial boards for several other biomedical informatics publications. Dr. Kukafka has authored several key articles and books, and book chapters in the fields of public health informatics and consumer health informatics. Dr. Kukafka is an experienced mentor; notably in the area of public health informatics where she spearheaded the formation of the public health informatics program at the Department of Biomedical Informatics, Columbia University, one of four programs in the country, to build this specialization with training support from the Robert Wood Foundation and National Library of Medicine. Janet M. Marchibroda, M.B.A., is the chief executive officer of the eHealth Initiative and its Foundation, both Washington, DC-based inde- pendent, national nonprofit organizations whose missions are to improve
108 HEALTH LITERACY, eHEALTH, AND COMMUNICATION the Âquality, safety and efficiency of health care through information and information technology. The eHealth Initiative is a multi-stakeholder member organizationâ representing clinicians, employers, health plans, health care IT suppliers, hospitals and other health care providers, consumer groups, pharma- ceutical and medical device manufacturers, public health organizations, standards bodies, and academic institutionsâthat develops consensus among multiple and diverse stakeholders on strategies that will drive better health care for patients through the use of information technology. Through the eHealth Initiative Foundation, the organization provides financial and technical support to state, regional, and community-based multi-stakeholder collaboratives across the nation who are mobilizing health information electronically to support patient care. Ms. Marchibroda previously served as the executive director of Con- necting for Healthâa publicâprivate sector initiative funded and led by the Markle Foundation and supported by the Robert Wood Johnson Foun- dationâwhich is designed to catalyze actions on a national basis to drive electronic connectivity and create an interconnected, electronic health information infrastructure. In addition, she was recognized in 2005 as one of the Top 25 Women in Healthcare by Modern Healthcare magazine and in 2006 for the Federal Computer Week Top 100 Award. Prior to the eHealth Initiative, Ms. Marchibroda cofounded and served as chief operating officer for two health care information organi- zations, one which focuses on providing patient safety and compliance information to physicians and the otherâa Bertelsmann AG subsidiaryâ which focuses on providing electronic publishing services to the payer community to support member information needs. She also served as the interim chief operating officer for the National Coalition for Cancer Survivorship. Ms. Marchibroda also served as the chief operating officer of the National Committee for Quality Assurance, an organization devoted to evaluating and improving the quality of health care for Americansâ where she was responsible for accreditation of health care organizations, education programs, the national HEDIS database, electronic information products, strategic planning, human resources, finance, and administra- tion. She holds a B.S. in commerce from the University of Virginia and an M.B.A. with a concentration in organization development from George Washington University. Kim Nazi, F.A.C.H.E., is a management analyst for the Department of Veterans Affairs (VA), working in the Veterans/Consumer Health Infor- matics Office of the Veterans Health Administration (VHA). She is a Board-Certified Healthcare Executive and a fellow in the American Col-
APPENDIX C 109 lege of Healthcare Executives. She holds a masterâs degree in strategic communication from Seton Hall University, New Jersey and is currently a doctoral student in the joint sociology/communication program at the University of Albany. Ms. Naziâs research interests include technology and personal health records, health communication, and behavioral inter- ventions. Prior to taking on her current role in July 2006, she served as the director of eHealth for the VA Healthcare Network Upstate New York, focusing on the use of technology to improve and expand the delivery of health care services. Ms. Nazi is a graduate of the VAâs Executive Career Field Candidate program and a member of the American Health Informa- tion Community Consumer Empowerment Workgroup. Cameron D. Norman, Ph.D., is an assistant professor in the Department of Public Health Sciences at the University of Toronto, director of evaluation with the Peter A. Silverman Global eHealth Program, and the principal investigator of Youth Voices Research, the youth engagement unit of the Centre for Health Promotion. The focus of his research is on understand- ing how people work together to solve health problems and how informa- tion technologies can aid learning and collaboration across time, physical space, and culture to improve health and well-being. His current research is seeking to understand how youth and young adults are engaged in health promotion through virtual communities; exploring what skills are necessary to fully participate in health decisions using information technology (eHealth); and how social networks connect ideas together to translate knowledge into improved health practices with professionals and consumers alike. Dr. Norman has published and presented widely on the concept of eHealth literacy, which he developed (with Harvey Skinner at York University) as a means of framing the essential skills necessary to fully engage with electronic health tools. His eHealth Literacy Scale is cur- rently in use in nine countries and has been translated into five languages and applied to both consumer and health professional populations. Dr. Norman holds a Ph.D. in public health from the University of Toronto and completed a post-doctoral fellowship in systems thinking and complexity science jointly at the University of British Columbia and the Centre for Global eHealth Innovation in Toronto. He lives in Toronto. Anthony âTonyâ Rodgers has over 25 years of health care executive management experience in both hospital systems and health plans. He currently holds the position of director of the Arizona Medicaid Program, known as the Arizona Health Care Cost Containment System. As Director, Mr. Rodgers reports to the Governor and is responsible for providing health coverage for one million Arizonans. The agency administers multiple sources of funding and provides oversight and com-
110 HEALTH LITERACY, eHEALTH, AND COMMUNICATION pliance to health care providers that focus on quality of care and fiscal accountability. Mr. Rodgers currently holds visiting professor appointments at A Â rizona State University, at the W.P Carey School of Business, and at University of CaliforniaâLos Angeles, School of Public Health. Joshua Seidman, Ph.D., M.H.S., has been on a quest to improve health care quality for 17 yearsâfirst by influencing health plans and provider behavior, then shifting to a grassroots approach by activating consum- ers. In October 2001, Dr. Seidman saw the fusion of his two strategies to improve health care quality in information therapy. Information therapy (Ix) is the timely prescription and availability of evidence-based health information to meet individualsâ specific needs and support sound deci- sion making. Dr. Seidman leads the independent, not-for-profit IxCenter and pro- vides key leadership and direction, applying his extensive experience in strategic planning, product development, research, and education. Before launching the IxCenter, Dr. Seidman served as senior editor and director of quality initiatives for the Advisory Board Companyâs Consumer Health Initiative. In that capacity, he played a leading role in strategic planning and product development and provided leadership in the development of quality-of-care information for consumers. Dr. Seidman has worked for the National Committee for Quality Assurance as the director of measure development, overseeing analytical projects related to health-plan-performance measure testing and develop- ment for HEDISï. He has also worked at the Advisory Board Company as a consultant and at the American College of Cardiology as assistant director of Private Sector Relations, conducting extensive research and analysis in managed care, quality-of-care issues, and other aspects of the health care industry. In addition, Dr. Seidman has published several book chapters and articles in peer-reviewed journals on eHealth and quality- of-care-related issues. Dr. Seidman holds a Ph.D. in health services research and a master of health science degree in health policy and management, both from the Johns Hopkins School of Public Health. His doctoral research involved the development of a tool to evaluate the quality of health information on the Internet and an assessment of what website characteristics influenced health information quality. He earned a bachelor of arts in political science from Brown University. Due to his unique dissertation research and expertise, he has served as a consultant to independent oversight groups and government agen- cies in the assessment of electronic consumer health information, and has served as a peer reviewer for various scientific journals including The
APPENDIX C 111 Â ournal of Medical Internet Research. He also authored the California Health- J Care Foundation Issue Brief, âLost in Translation: Consumer Health Infor- mation in an Interoperable World,â which examines what could be done to better integrate consumer health information standards into PHRs and the national health information network framework. For 5 years, Dr. Seidman volunteered as president of the board of directors for Micah House, a transitional house in Washington, DC, for homeless women recovering from substance abuse. Seidman uses distance running as his own therapy of sorts, and has completed 27 marathons. Cynthia Solomon is CEO of Access Strategies Inc, a health care consulting firm located in Sonoma, California. Her company specializes in research, development and implementation of special projects which focus on sys- tems of care for at-risk populations including the indigent, chronically ill and uninsured. She has over 25 years experience as a health systems consultant in the private and public health sectors. Ms. Solomon is a co- founder of MiVia, an electronic personal health record for migrant and seasonal workers developed for a nonprofit coalition of health and ser- vice providers serving agricultural workers. In October 2005, MiVia was highlighted in the Presidential Commission Report on Systemic Interop- erability, submitted to Congress (www.endingthedocumentgame.gov). MiVia is currently being implemented in California, Oregon, and two rural migrant health networks in New York. Ms. Solomonâs company launched the FollowMeâ¢ PHR in 2000. The FollowMe platform has been recognized as a pioneer in the field of PHRs and has been featured in several national publications including The ÂEconomist, Washington Post, Wall Street Journal, L.A. Times, Â Medical Ethics, and For the Record. She is a member of the Markle Foundation Connecting for Health Workgroup and participated in developing the rec- ommendations and standards for interoperability between electronic health records (EHRs) and PHRs which was submitted to the Office of the National Coordinator for Health Information Technology (HHS) in July 2004. Ms. Solomon has presented testimony on PHR technology to the NCVHS NHII workgroup in April 2005. She has also presented testimony to the Consumer Empowerment WorkgroupâAmerican Health Informa- tion Community on the role of Government in PHR technology. As the mother of a child diagnosed with hydrocephalus she is an experienced and committed health advocate and cofounder of the Hydro- cephalus Association, a national support and advocacy organization for families and individuals living with hydrocephalus. Her son Alex has had multiple procedures and hospitalizations and it was her frustration with trying to manage and coordinate his complex medical information that led her to developing a Web-based PHR in 1999.