1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Plenary Session: "The Promise and Uncertainty of Networked Consumer Health Information"

Wednesday, April 16
8:30-9:30 AM

Moderator: Lisa Simpson, Acting Administrator, Agency for Health Care Policy and Research, U.S. Department of Health and Human Services

Speaker: Vicki S. Freimuth, Associate Director for Communication, The Centers for Disease Control and Prevention, U.S. Department of Health and Human Services

Speaker: Jeanne Gleason, Executive Producer, NMSU Video and Multimedia Studio

Speaker: Shoshanna Sofaer, Director, Center for Health Outcomes Improvement Research, George Washington University

Speaker: Holly Jimison, Director, Informed Patient Decisions Group, Oregon Health Sciences University

Simpson: Welcome. What promise can enhanced information bring to the future? It can improve the delivery of health care services as well as support individuals in their choices. We need to improve information at the clinical setting, and we need to improve the quality, outcome, and cost of interactive media in consumer health care. Well-planned goals must be set so we can make them a reality. We should go forward with all the effectiveness of the interactive media, instead of just going forward with particular information. The key is research in the area of health care services.

Freimuth: What have we learned from the evaluation of existing health communication efforts? We were interested in how interactive media can be used in the prevention of health care problems.

We looked at typical health care campaigns -- specifically mass media campaigns meant to reach large audiences with a message over a period of time, such as the importance of mammograms, the use of condoms, and seat belt use. How is this evaluation done? With a survey at the beginning and then a follow-up survey at the end. This will lead to findings on access exposure; knowledge gained; awareness and attitude; and behavior change, especially self-reported changes. To achieve optimal outcome from the program, set realistic expectations in four key areas: awareness, knowledge, attitude, and behavior.

Campaigns differ in what can be accomplished through them. The McGuire Hierarchy of Communication is a good tool. The outcomes do not have to come in any type of order. When the evaluation was performed, findings were: awareness 56 percent (able to recall the message); knowledge 22 percent (able to give back the information); attitude 8 percent (reported a change in attitude); and behavior 13 percent (reported actually changing their behavior). This particular campaign only produced modest results, but you can set higher expectations.

Establish control groups to get exposure and to be able to claim effects with regard to behavior change. Knowing does not equal doing; knowledge does not mean behavior change. Information alone is not enough to influence behavior change. We should use what we know about human behavior, such as theory-based programs for a better chance of success. Tailor the program and the message to the audience you are targeting. The question is: do these systems apply to consumer health care information?

Gleason: Formative evaluations can be very powerful. Working with the Navaho Nation, we helped design the programs that would be used by this population. The touch-screen system was used to communicate with the people to learn which processes would make the system work for them. Formative evaluations will facilitate use of the system by the people. Examples of results that the formative evaluations produced are icons on the information system -- the touch-screen system that was developed in English and Navaho. Use of no words on screen was most effective.

Formative evaluations will kill the black holes in research. Through them it is learned what an icon should look like and what the user actually sees. Formative evaluations of the target audience can solve these types of problems.

Sofaer: Our research involves finding a means to get and use information interventions to support decision making. How do you provide information to make decisions in the increasing clutter of health care choices? You have to make the information simple, and to do this, you must have both knowledge and understanding of the information you are trying to get across.

Some take-home points: When using interactive media, outcome is important. So define and measure your outcome clearly. Then, watch to see what information consumers select and how they access it; this will help determine outcome. Once they select and access information, the outcome shows what type of information they want and their knowledge of the material.

Make sure the intervention information can be measured. Make sure interactive media are used in a way that is appropriate to the audience targeted, and use the media fully. Assess the media itself -- determine if you have made the appropriate choice for the message you want to get across. Provide information and get feedback from consumers. There is a limited comfort level for consumers. Use information that is trustworthy -- this entails working with the audience and getting feedback from consumers on their assessment and use of the interactive media. This way we can respond to the impact of the interactive media on the American public.

Jimison: Things are evolving quickly in networked technology dealing with consumer health interventions. A question is, what are the particular problems with evaluating networked consumer health information systems? Technological changes and medical changes are evolving fast. What does this mean to evaluators? From a medical perspective, there are underlying changes in social trends. From a technological perspective, a challenge is evaluating a moving target, usually not an isolated intervention; and there is a need for more rapid turnaround. You need to find new ways to evaluate for a rapid turnaround. What is the impact of the intervention; what makes it work?

To determine the answers to these questions, we must employ a needs assessment, usability testing, control trials, testing in controlled settings, and testing in the community. The results will yield information on access, use, knowledge, attitudes, self-efficacy, etc.

There is a problem with interpretation biases: the system user may not be representative of the group you want to access. Consider characteristics of people like wealth, age, education, and computer literacy. The information may not necessarily be appropriately used. Just because there is a hit, that does not mean the information was understood, or that it was what the user wanted to find.

Issues to consider: stakeholders (who will be using information) and funding. The main issue for the future is to tailor the information to the individual user.

Questions and statements from the audience: When you make a needs assessment, also do strength and capacity assessments.

Audience comment: A good way to evaluate web site hits is to use "click throughs" with little or no cost to consumer.

Question: Why was an intern designer used to design icons instead of a native designer?

Gleason: The intern was on a special project, but eventually the native designer was used.

Question: How do you feel about using interactive media to create new opportunities on web sites?

Unanimous panel: We think it's a great opportunity.

Back to Summaries and Transcripts page.