AMIA 2003 Spring Congress Summary

May 28-30, 2003, Philadelphia, Pa.

Bridging the Digital Divide: Informatics and Vulnerable Populations

George Kim, Claire Twose

June 10, 2003

The AMIA Spring Congress, unlike the Fall Symposium, focuses on a specific theme (as opposed to general themes), in this case, Informatics and Vulnerable Populations. Collectively termed the "Digital Divide", the barriers created by information and communication technologies have prevented underserved populations from receiving positive benefits of health information via dissemination applications such as the Internet. The stated purpose of the conference is to develop a framework for a national agenda in information and communication technology that will enhance the health care and thereby the health of underserved populations with the tangible goal of the creation of a series of white papers for publication in JAMIA.

Wednesday, May 28, 2003

The opening keynote speaker was Laura Landro, senior editor at the Wall Street Journal and a leading health consumer advocate, who is a survivor of chronic myelogenous leukemia (CML) with which she was diagnosed in 1992. As a patient, she was “dismayed by the brusque and condescending manner of her caregivers at a nationally-renown cancer treatment center” and used her skills and resources as a reporter to become an enlightened and empowered patient, somewhat to the dismay of her providers, and in doing so, became a leading advocate in the self-empowerment of patients in their own care. She has written a book: Survivor: Taking Control of Your Fight Against Cancer, acclaimed as a moving account of her experiences in the health system.

During her address, she gave an account of her experiences and of her particular orientation to electronic information resources (which were not publicly available at the time of her original diagnosis) as a reporter. Issues raised by the audience during the Q and A session afterward included the problems posed to vulnerable populations by inaccessibility to such information resources, and efforts to make them available via public libraries and other avenues. Her experience highlights by exception the issues facing vulnerable populations: she had health insurance, education and access to those who would help her understand the medical system. She used these advantages to obtain cutting edge care on the other side of the country, a solution not available to those whose needs the conference seeks to address.

Three speakers followed, focusing on Issues and Trends:

Holly Jimison, PhD, from Kaiser Permanente Center for Health Research spoke on Issues and Trends: the State of the Problem in which she listed vulnerable populations as: disadvantaged minorities, rural, those with language barriers, women (internationally), low income/low education, ethnic groups, elders, and people with disabilities. She presented comparative statistics on Internet use in these groups and concluded that there were major differences in groups of different ages and incomes, but not races; that reasons people do not go online differ by age: older users believe that the Internet is “dangerous” (54%) and don’t perceive benefits (51%), while younger users (under 30 years of age) cite cost as a major barrier. In addition, about 25% of those not online report a disability and 28% of those cited disability as a block to Internet use (Data cited is from the Pew Internet and the American Life Project Report (April 2003): The Ever-Shifting Internet Population: A new look at Internet access and the digital divide). She ended with a summary of research challenges and examples of projects and outreach by the government and universities.

Gary Kreps, PhD, Chief of Health Communication and Informatics Research Branch of the National Cancer Institute (NCI) then spoke about Ideals and Methods to Get to the Ideal. He gave a broad overview on strategies needed to address the “Digital Divide”: analyze the audience, develop the informatics infrastructure, and develop meaningful community partnerships. He concluded with specific projects implemented and/or supported by NCI that effectively disseminate information about different forms of cancer to underserved populations.

Marci Campbell PhD, MPH from UNC Chapel Hill concluded the session with How Do We Get to the Ideal Future? (No PowerPoint). She advocated for a framework of extensive formative research and expanded access to the Internet from many public spaces. She also presented an example of a project in which patients used computers to enter their own history on line rather than on paper. Despite requiring a substantially longer time to complete, the computer version was highly preferred by the low literacy group.

Four Breakout Sessions tracks formed the core of the Congress: Issues and Trends, Strategies, Evaluation and Dissemination. Each track met for four sessions, with each session focusing on articulating the different stages of reaching the Ideal (defining the ideal; identifying barriers and enablers to reaching the ideal; strategies; overall recommendations). Session Leaders successively guided the groups to develop explicit statements of ideals, barriers/enablers, goals and strategies to achieve the Ideal for final presentation at the end of the Congress.

The Dinner Speaker, Mark Williams, MD, Associate Professor of Medicine from Emory University, focused on Health Literacy (HL) with an overview of recent studies and from the American Medical Association HL Initiative to promote awareness of the problem (with a recent meeting in May 2003 in Washington DC). In addition, Dr. Williams’ talk featured videos of patients and their actual problems with HL as illustrated through their understanding (or misunderstanding) of the purpose and dosing of their medications.

Thursday, May 29, 2003

The second morning of the conference featured plenary presentations on Strategies showcasing projects implemented to address specific areas of consumer health information need, their successes and lessons learned. Projects presented were:

The session concluded with NLM's Strategic Framework for Bridging the Health Information Divide (No PowerPoint) by Eliot Siegel, PhD from NLM and a discussion of efforts that NLM has made to bridge the Health Divide using information dissemination via their Internet programs and their association with the NN/LM.

After the second Breakout Session, addressing barriers and enablers to developing the Ideals articulated in the first session, a plenary panel on Evaluation followed. The panel was structured around a hypothetical discussion of a project to produce a decision support and patient education system on AIDS medication. How the project evaluation should be designed and implemented was addressed in a point (by Peter Messeri, PhD from Columbia acting as “grantee” making a proposal) and counterpoint (No PowerPoint) (by Charles P. Friedman, PhD from Pittsburgh acting as “grant evaluator”), followed by an overall critique (by Bonnie Kaplan, PhD from Yale) of both sides from the perspective of the consumer.

Following the third Breakout Session, intended to articulate strategies for addressing the barriers discussed during the morning session, a plenary panel on Dissemination occurred with projects from:

The fourth and final Breakout Session wrapped up the discussion and developed overarching recommendations. The Session Moderators were left to formalize the discussions into final presentations for Friday morning.

Friday, May 30, 2003

During the first session of the final morning, each of the Session Moderators presented the results of the previous discussions. There was considerable overlap among recommendations, goals and strategies of the different Sessions. (Details of presentations are on separate file and on PowerPoint for Issues, Strategies, Evaluation and Dissemination). Many groups advocated the development of partnerships and participatory research methodologies with vulnerable populations, and for increase in funding and training in this area. The recommendations will be used to create one or more White Papers.

The Congress finished with a panel on Funding Opportunities. There are a lot of them, (even with the current budgeting issues, apparently) and some of these were presented from NLM (by Milton Corn, MD), RWJ (by Steve Downs, Senior Program Officer), AHRQ (by Eduardo Ortiz, MD, MPH) and NCI (by Gary Kreps, PhD). Steve Downs did indicate that with the drop in the market there would be less money overall to distribute at RWJ, and with the emphasis on large, multiyear projects, most funding is going into renewals rather than new projects. Eduardo Ortiz of AHRQ indicated that while the 2004 budget proposal is being touted as an increase over what was requested by the President, the amount currently under discussion represents over a 9% decrease from actual funding in 2003, and he anticipates that all new projects for 2004 will have to relate to the Agency’s theme of Patient Safety in order to be fundable.

The speakers gave their contact information for follow-up and most if not all put their presentations on the AMIA Web site for reference. We will be sent notices when the White Papers are nearing completion.