1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Redefining Roles 6: "Making Informed Health Decisions"

Wednesday, April 16
2:00-3:30 PM

Moderator: Joseph Henderson, M.D., Director, Interactive Media Laboratory, Dartmouth Medical School, Hanover, NH

David S. McWaters, Pharm.D., J.D., Research Director, Direct Medical Knowledge, Mill Valley, CA

Elizabeth W. Hoy, Director of Health Systems Management, Institute for Health Policy Solutions, Washington, DC

James F. Fries, M.D., Professor of Medicine, Department of Medicine, Stanford University, Palo Alto, CA

Henderson: This session will be conducted by a panel who will address the topic of making informed health decisions. My name is Joe Henderson. About 8 years ago I was recruited to go and do some work pertaining to breast cancer -- as well as to work on another project on lower back pain. And then we went out of business. When I was invited to be a chairperson for this panel, I said that I am not very good at going about taking on a role like that. I am going to wear two hats today.

Being the chairman has allowed me to establish an agenda. The agenda is focused on health decisions made for the quality of survival and will also cover selection of certain strategies. We will also talk about the quality of interaction between care provider and patient. Among the questions I would raise for consideration is, who makes the decision? Does the provider? And how do these technologies affect the decision? Who participates in providing education? What kinds of information should be presented? What is the balance between them? What is the role of emotional support? Information and the way that it is presented can be therapeutic. The adviser is a woman with breast cancer, and she begins by talking about the emotional aspects of her treatment. Is that good? How do we assure that, if we develop these things, they will be used -- and how will they be used? I will stop now that I have raised those questions.

We are going to start with David McWaters, Research Director of Direct Medical Knowledge. He has dual degrees in pharmacy and law and practices neither. He has taught pharmacy in academia, and he is a former long-term volunteer consultant.

McWaters: I am not sure that I am allowed to do this because we are being taped. I need a mike. I am going to start off with a quote. I commute a lot to work. I was listening to National Public Radio, and I heard this great quote, "Data are not information; information is not knowledge; knowledge is not wisdom." I think that concept is very fundamental.

This is a slide that may be familiar to all of you (about a MEDLINE dump). I am going to try to describe information. It can either be technical or consumer friendly. It can be between knowledge and information. There are articles that are consumer friendly and books online that are not tailored to the individual. We need to provide information that is tailored and relevant to the consumer. We want to be able to customize it to be appropriate according to a person's age, gender, coexisting health conditions, and lifestyle issues. We want to be able to utilize it to provide foundational information to facilitate understanding. That could be a dictionary or encyclopedia, and we should present the relevant anatomy and physiology. I think that this is very helpful information. We should also provide information in a style that is comfortable for the consumer. That is to allow preferences for reading levels, personal stories, etc., and different writing styles. We should provide information in a format desired by the consumer, either on the web or in print. We should provide resources. No one can do all and know all. I am of the opinion that we should provide appropriate materials and exclude inappropriate materials. The criteria should vary, and it should be cast broadly. And whatever criteria you use, I think it needs ongoing clinical review.

This is an example of one of our web site pages (about a report checklist). Because users have told us they have angina, I am going to ask them certain questions such as, "Do you smoke?" And at the end of this process they will come up with a report tailored for them. It can be delivered to them on the web site, or we can Federal Express it. In order to make decisions on this information, you should start with the disease, condition, or health topic, and not the source of information. You should identify patient variables, then go out and get the information. How do you evaluate materials? Our standards are that it be accurate and scientifically valid. They should have objectivity, authority, immediacy, currency, coverage, and a clear writing style.

And that is the end of my discussion. Thank you.

Henderson: I would like to introduce Elizabeth Hoy. She is the Director of Health Systems Management at the Institute for Health Policy Solutions.

Hoy: My organization offers consumers a choice of health plans. Choosing your health plan really means choosing your doctor. I am going to tell you about the Consumer Assessment of Health Plans (CAHPS) program. This gets information to consumers so that they can make a better decision on what they would like to do.

We were told to collaborate and come up with a single set of survey items to feed back to people. We think that we have done a good job at that. We came up with a set of basic questionnaires. We have a set of core questions. There is one for adults and one for children. Then we have supplemental items. In addition to that, there is a users' network. We have developed an implementation handbook.

The thing that I want to talk about is the reporting kit. It makes the project really unique. We have a guide to assist in comparing health plans. One is a print guide, and the other is a computerized guide. The computerized one is currently under development. There are promotional and educational materials. Some of these materials are educational videos, posters, and brochures. I have already mentioned what makes this information so unique. We have gone out and done extensive debriefing. This tells you what is included in reports. It includes information from the survey; information about the plans (costs, services covered, and plan ground rules); definitions; self-assessment; worksheets; and scenarios. It asks you the following questions: What are the overall challenges in designing the reports? How do we sequence the data? How do we layer the information? How do we develop the products so that they can be mixed and matched? We do this by inserting the information in our templates; keeping user burden low; and accommodating newly available information.

A couple of more challenges in designing the reports are ensuring that data are displayed clearly and accurately; helping consumers interpret comparative data; and providing text and explanations, such as grouping data, showing composites, selecting benchmarks, and identifying comparisons. This is just a quick list in the design decisions (aim for easy comprehension; acknowledge cognitive complexity; navigational tools; layer products; simplify graphics to make comparisons easier; create composite measures; and try to make the product as flexible as possible for sponsors).

In terms of layer, we have come up with the big picture. This is a star chart that compresses the overall rating for this health plan. The data are broken down for adult and child care. After the star chart, we get into the graphic display of information. We looked at the composite in getting the care you need. Another thing we have found is that people do not read the text. The first page of the workshop has a section that tells you what the report covers and where to call when you need help or information. Then, at the bottom, there is a survey of this page. This survey is regarding certain topics. Then you have a tally that would tell you which plans are the best.

The last item is where to go for more information. You can go through the users’ network contractor called Survey Users' Network (SUN). They have a toll-free number, which is 1-800-492-4961. Also, there is a users' network that holds a meeting several times a year that tells you how this works. Thank you.

Henderson: Our final speaker is James Fries, Professor of Medicine in the Department of Medicine at Stanford University.

Fries: Thank you. I had to think about what I could do in about 20 minutes. I am going to give you real-life examples of what to do. I am going to tie together our prospective and conceptual advances as we enter the technology age. No matter how good your health service is, you cannot get what you want. There was a revolution beginning 10 or 15 years ago in which patient information shifted. We have tried to devote ourselves to meeting certain program demands. We started out in a great health care reform debate, but it was not about health care or reform. To me, health care reform has got to have a country come out healthier than it was before.

We try and make the distinction between need and demand. Need is the burden of illness of the country. It sums up all the heart disease, strokes, cancer, etc. Demand is a request for services. This is treatment of colds, prostate surgery, and tonsillectomies. There are generally things that have an unexpected outcome, such as when you get a cold. We will then define an unnecessary need as a personal lifestyle choice. Unnecessary demand is a failure of self-management, leading to unnecessary doctor visits, procedures, tests, and drugs.

Along with the activities of the health project, we came along with a large definition of health promotion. It came out of our section of attributes. The definition for health promotion is, "All activities that educate, guide, and motivate the individual to take personal actions that improve the likelihood of sustained good health and increase the appropriateness of requested services." It is an empowerment kind of statement.

We have a questionnaire, and there is a lot you could do with it. It is going to enable you to get the past history and will give your interventions to the right person. You could use it individually. It is good as a comparison. You could identify and intervene with high-risk individuals as well as channel to chronic disease modules. You could measure outcomes and provide health risk data to enrich clinical care. We are going to have computer-based medical records that should have outcome assessment, quality assurance, health risk factors, and health education.

The lifespan perspective is primary prevention, then self-management and professional disease management. The five lines of health defense are prevention, self-management, triage, medical management, and chronic disease management. This is all for today. Thank you for listening.

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