1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Tools and Toolboxes #2: "Tales From the Trenches"

Wednesday, April 15
9:30-11:00 AM

Moderator: Stephen J. Downs, Acting Director, Telecommunications and Information Infrastructure Assistance Program, National Telecommunications and Information Administration, U.S. Department of Commerce, Washington, DC

Jean Wooldridge, Regional Program Director, Fred Hutchinson Cancer Research Center, Seattle, WA

Linda R. Cooperstock, M.P.H., Senior Health Program Specialist, University of Missouri School of Medicine, Integrated Technology Services, The Missouri IAIMS Project, Columbia, MO

Barry Silverman, Ph.D., Director of the Institute for Artificial Intelligence, George Washington University, Washington, DC

Naomi Broering, M.L.S., President, Medical Library Association, Texas Medical Center Library, Houston Academy of Medicine, Houston, TX

Downs: We're going to get started. I'm with the National Telecommunications and Information Administration where I work in the Telecommunications Assistance Program. We just call the program TAP for short. This new technology and its possibilities in promoting health care are pretty exciting. There weren't a lot of tales from the trenches a few years ago, because ideas were first being kicked around. We've got four speakers here who can speak to that. With that, I'd like to introduce Jean Wooldridge, who is the Project Director for the Cancer Information Service for the Pacific Northwest Demonstration Project.

Wooldridge: [slide shows deer looking straight at camera] We are halfway through, but we are still in the trenches. I'm showing you this slide to demonstrate how we felt when we started to take on this project in public health promotion, a little like a deer caught in the headlights. It's exciting that we are embracing an opportunity to learn. For this project (Reaching Underserved Populations for Breast and Cervical Cancer), we have had a number of partners, including the Center for Disease Control (CDC), National Cancer Institute (NCI), and the Fred Hutchinson Cancer Research Center. This is a national partnership, between two programs and two agencies -- NCI and CDC. There are four projects across the State, blending case management style. We've been doing ground work with Western Washington tribes, and our next step will be an outreach program.

It's quite exciting, as computer grants are now being written to reach remote clinics in native areas. The evaluation survey research is being done at the University of Chicago. We are working around Washington State with various tribes, and we coordinate with the Olympia office.

Among the barriers that we've faced are the lack of culturally sensitive messages and the fact that breast cancer is not a priority for the tribe. The tribe is more concerned with issues such as suicide and alcoholism.

The priorities that we came out with were staying healthy and doing it for the community's sake -- and making sure that the professionals paid attention to traditional medicine. The goals are to get women in for screening and to better serve those women. We did a survey first for computer literacy. It's on our web site, so you can download it: http://weber.u.washington.edu/~nwcphp

The survey, which was conducted about 18 months ago, found Internet use equivalent to VCR tape rentals. The growth of technology is so fast that our innovations can't keep up with demand [slide of web site]. We have a number of different languages on here, and it's updated every 2 weeks. The bar on the left gets us to pamphlets on health care, and it includes audio for low-literacy users. One of the things that was requested was maps. We have three types of maps: one that shows regions of the State so outreach workers can e-mail clinics directly from the list, another map that shows where mammography sites and clinics are, and street maps. And, in response to requests we’ve received, we have bus maps and ferry routes now.

Here's an example of one of the street maps. People can get into the database and can get right to the newsletter. It's very rich and very full featured.

There have been a few surprises. A few of our partners are doing some of our training for us. You really need to look at business models. They have deep research and development pockets. Last, I invite you all to visit the Northwest.

Downs: Our next speaker is Linda Cooperstock. She is the Planning/Coordination Manager for Intergrated Technology Services of the University of Missouri-Columbia.

Cooperstock: We've just combined the information technology of hospitals and clinics and other groups, and this is like combining many foreign areas that have not worked together before, so it's been fun to watch the evolution of the process. The Missouri Integrated Advanced Information Management System Project (MIAIMS) program is in its infancy.

When I came from a real public health job, I thought I was going to have to give up public health, but I have been even more involved in this area. You just don't use the term public health.

It all started at the Partnerships Conference in 1995. I called a party of all my friends in the public health arena, and they all came to see this presentation. Although the projector was bad, the content was good enough. Some of the speakers included C. Everett Koop, Reed Tuckson, and John Harris. Reed talked about access equity, Harris talked about Americans having unanswered health questions, and so on. And everyone came away feeling pretty excited.

Even in a public institution, it is possible to make partnerships with health agencies and State agencies. We produced a consumer information web page, consumer health information committee, and web team.

The web team is composed of the MI-AIMS project staff (which consists of our staff -- they're my experts). They are public relations professionals in hospitals and clinics and specialists in information technology services.

Consumer web projects include web use training, an HTML training course, our web site (http://www.hsc.missouri.edu), web site evaluation, web access to pediatric patients' families, and rural access projects.

The web training started out with our committee. We'll train you, you create it, and we'll help you put it up for free. As long as there's space available, we'll train you. We've produced a web site evaluation form. What we asked ourselves as we prepared to assist people in implementing their sites was, what does it look like? Is it appealing? Is it navigable? And is the information from a recognized source?

The big project is assuring web access to families, and another one in the offing is a rural access project. The name of the grant on that one is the Fund for Rural America, which is taking applications for July 1. We have a teeny-tiny community called Pilot Grove. They wanted to put in computers, and we could justify giving manpower and equipment to them if their project had a health care component to it. We identified major centers for the community, and it looks like we're going to put at least one computer at the grain elevator, church, diner, and local nursing home. The key is to have someone available who can help train in use of the computers.

The pediatric web site would include an adolescent activity center, pediatrics family room, and pediatrics waiting room. We can offer the most freedom on the web, and users can search the Internet to find the games that can keep kids mentally active during the day. There are computers on each floor that offer a self-tutorial on the web, using Shockwave to show how to use the mouse. The tutorial then shows what a scroll bar is and then demonstrates use of bookmarks and such. So, we're trying to address the needs of many people -- from the high-tech person all the way down to the rural folks who have never seen a mouse. The pediatrics waiting room is the highest risk as far as equipment, but we're going to try anyway. Now that I'm the manager, I'm pushing a little risk on people -- we'll try it.

Here are some considerations. We feel it's necessary to have a real person there to answer questions. We're going to tap into the retired folks who we've talked to at the mall, and they can help with parents. One exciting challenge is getting people to help people.

I'm real concerned with how understandable the content on the web is for users. The role of the health services library is to move the library in the direction where users want to create projects. It's kind of foreign to consumers to go to a science library and ask for information. It's usually students who do that.

Downs: Our next speaker is Naomi Broering, who is the president of the Medical Library Association, and is at the Texas Medical Center Library in the Houston Academy of Medicine. She will address the issue of bringing library services directly to users.

Broering: You almost feel like you should travel with your own equipment. We really concentrate on giving information to professionals, but over the last two years, it's amazing how everything has evolved.

Many medical schools are giving advice on consumer health education. For those of you who are librarians, there's an important role that you play in community. We are the one who family members will explore when they don't know which way to go. They go to the library. A doctor will want some new article about heart surgery and will call the library. A child has swallowed poison, and a parent will call the library. We provide public health service documents and information on vaccinations all the time. What happens a lot of the time is people get all these medicines, and they want someone to help them investigate the adverse effects of the drugs. Listening to a doctor or nurse is not enough. Cancer patients often come, and are frantic, wanting to know things instantly.

The library is on the firing line. We have always worked together, which is important, because we usually don't have any money. We work with public libraries, hospital libraries, and academic health center libraries. Librarians provide the resources, because we have the connections in our library. But education has become a very important part of our responsibility. We teach the user how to access information and how to use the Internet.

I want to help the information-poor as well as the information-rich. People come to me, and we try to extend the same services to them as to others as much as we can. We try to ensure that there is equality and universal access to information.

From the library community itself, there were a lot of early efforts. One of the most popular is Planetree Service in California.

Today's services include the following: the most popular is Cincinnati's Netwellness program. Others are NYU's New York Online Access Health (NOAH) project and Medical Library Association Network of Health Information Professionals (MLANET). They have established a number of resources on the Net.

The outreach services were basically established by those programs, and we have been able to extend some of those services to the community. We will provide training to anybody who wants to come to one of our workshops. Also, there are network links to disease information. This is wonderful, because each library has taken on an area of information. It's nice, because if you collaborate with people, you don't have to specialize in everything.

At Houston, we are providing a consumer health information service, an expanded reading room, an electronic and print collection, start-up funds, and assistance to public libraries and schools.

Librarians can deliver customized information, train and educate users, develop collections of print and nonprint items, network with other libraries, and provide community service.

The Medical Library Association (MLA) established a policy on consumer health information. It encourages self-help groups, advocates for public access to health information, and protects the individual's rights to unrestricted access.

The MLA is also concerned with copyright laws and is working with telemedicine groups on distance education. The latest endeavor we have been involved with is the National Alliance for Caregivers.

I wanted to show you the MLA's home page and the way people can access it. Let me show you some of the diseases you could pull up. The National Jewish Center has put up all these different items (topics on slide include asthma, chickenpox, croup, and hay fever). It's one example of the kind of thing we do.

Downs: Our last speaker is Barry Silverman. He is the director of the Institute for Artificial Intelligence at George Washington University. At G.W., Barry very cleverly developed the snake program that would hiss when time was up.

Silverman: I noticed in the program this morning that it listed a wide variety of speakers, even a toolmaker. I am that individual. I hope I can give you a presentation that won't put you to sleep.

Here are some tools that are being developed. Web agents. This is software that anticipates your needs and can access information from the web before you come to the terminal.

This is the present theory -- we're hearing a lot about the web just making its way into health care usage. As you know, anything that's 3 years old is out of date, so you have to keep pushing the curve. The new idea is an active anticipatory program -- it knows who you are, can run guidelines, and determine what it is that you need. Instead of coming to the page full of choices, it would pick the information for you. It wouldn't stop you from browsing, but it would pick what was relevant to you.

However, we still have our challenges. I heard on the radio today that a husband shot his wife's computer with a gun because she spent all her time on the Internet. But we can't solve everything.

The whole idea of using agents, which we call software robots or "softbot" instead of the browser, reflects on the issue of the computer taking control away from users. We wonder what direction we are going in if we are reaching a point where users feel they have lost control. For our agent to be smart, it must have health information and rules that can be run against the patient's information.

Any association will have very extensive guidelines online. The information is set up so you can browse -- you can put in some symptoms and out pop a few answers.

All the guidelines that we have are extremely incomplete, and part of our research is to come up with second-generation guidelines. The system should be easy and enticing, and anyone who knows anything about guidelines should be able to author them. That's the real challenge for us and for the field of health information technology. Last but not least of the challenges is dealing with the security issue. We are grappling with that.

The basic idea of an agent is this little thing inside the web. Its sensors are screens it can send up to you, containing requests or queries it can send to patients, e-mails, alert messages it can trigger, and color changes it can make to draw readers’ eyes to certain areas of the screen. This agent is a robot -- it's in there. Its brain would translate guidelines into rules. Its sensors enable it to go out through the Internet to collect questions; it runs its rules and then processes items.

If you're a clinician, it should give you a serious list of things to do for patients. For consumers, there are other things it does. It will work on your behalf, such as remind you about pills and when to take them. We have loaded in guidelines, clinical preventive services -- it'll put "to do" items out there for you.

We're doing a couple of test beds. One is up in Boston, and we're talking to a cable health channel.

Let me wrap up with some myths and legends. One myth is that browsing is good. It's not. Most of us are on the clock, and we do need something better than that. There is also the myth that turning normal guidelines onto the Internet is good. We need second-generation guidelines. Information moves too fast. We really are trying to do something to help people, and we are working to develop middleware that will grapple with health information standards. The standards are changing very rapidly.

Downs: I wanted to take a couple of minutes to provide a perspective as a federal funder. The individuals working on the program I am involved with are interested in promoting nonprofit uses. We're really looking for all applications to reach their full potential. Naomi mentioned a couple -- Netwellness and the NOAH in New York City. I've gotten final reports.

The first thing to be aware of is that people use it. I know hit counts are not a good measurement of everything, but growth is a significant factor. Both projects see growth of 15 percent per month. One of the interesting things is there are a couple of pages in Spanish, and we have seen a growth of 25 percent in this service.

There is the notion of person-to-person communications. The New York service has an "Ask an Expert E-mail" service, which is quite popular. Another project is "Making Healthy Music," developed to assist in putting computers in homes, and to have residents communicate about issues and make connections to the local medical center and agency. People started to e-mail a lot of questions, which began opening up lines of communication. But people had better be there to answer them, or don't open them at all.

What is challenging about all this is the economics of it. Netwellness will be partnering with other major medical academic centers that will be funded by the State of Ohio. The NOAH program is cobbling together funding. Long-term prospects are open to question right now.

A final note is that the majority of users are women. On NOAH, the most popular areas are related to pregnancy, then cancer, AIDS, and sexually transmitted diseases. All services have demonstrated the role that libraries play with regard to how they serve and package information.

Something I am concerned about is that you can have enough comprehensive health information out there, but after a while, if you keep adding materials, you'll find you'll have too much. The specializations are key -- Netwellness with Ask the Expert, NOAH with the Spanish line. Both of the programs have local aspects, but only a very small percentage. How is that going to shake out?

Audience: I've heard a lot of talk about offering databases. What's happening as a result of the fact that 50 percent of consumers are using alternative sources? How are you all approaching databases? How are you taking care of that huge population out there?

Broering: I think when we start to package information, we'll make links to those databases. There is a lot of hope for that. One consideration as far as libraries are concerned is we don't want to tell people that information is coming from certified sources, but rather that we just provide the information. We want to emphasize the identification of core resources. We also provide links to resources on the Net. We don't want to duplicate resources, but there are new diseases and new sources coming up all the time. We need sources to update the files.

Audience: It's ironic in the information age that funding for libraries is decreasing. I'm concerned about this. Everyone's coming up with their own efforts. A lot of smaller efforts are being funded. This has to be addressed at a broad social level. In Canada, a lot of efforts are being funded at the municipal level. Let's not forget the institutions that are in place.

Audience: Maybe there should be a rating system, saying this is dumb-blind science, and this is well-researched science. There should be a tool that can help with that.

Wooldridge: We need to educate the populace about science. Help make it clear to them what's been proven or what's in mainstream, versus what's considered alternative. In Washington, the tribes are soon going to be taking care of their health care -- that's where the surf hits the coastline.

Audience: Libraries are places that process information, and they can offer classes on information architecture. They would begin by offering an understanding of how information is organized. One beneficial class could offer a critical analysis of search engines. This is something librarians are addressing; I call myself the next generation of librarians. This is a perfect project for librarians and public health people to partner.

Audience: There is no gatekeeper here. As long as information is available, you have to trust the consumer; the American Medical Association is no longer the gatekeeper.

Wooldridge: But you need to arm them for that.

Audience: I live in San Francisco. While you are allowing consumers to use the information where you are, at the University of San Francisco, unless you are an alumnus, you can't use it. Consumers have not been battering down the doors at UC.

Cooperstock: That's because of funding probably. Libraries have to decide how to give out information with limited funds.

Audience: I understand that, but still the information is getting out to a limited group of people. I also disagree that there is a good alternative health care database that uses technology to select information and materials that are appropriate for specific people. Push technology can be a wonderful solution.

Downs: I want to clarify what I spoke about. There are sites that have not tried to specialize, but have tried to be very broad.

Audience: I want to talk about how we get to the local library. I am a librarian and have found in this new position that I'm doing classes on how to evaluate web sites with American Cancer Society volunteers. All these things are intertwined. What guidelines do we use? My patients tell me. We must bring impetus to funding.

Audience: I think I am concerned after two programs in the last 2 days. There is a danger of public access to health. What is needed is the same as advertising, when an insurance company gives you higher rating. It should be the same thing on the web. It should be a third party that can rate these sites. We need a logo that will be internationally recognized -- that will say this is legitimate -- it is not Joe Blow offering up expert opinions on health care.

Downs: I'd be worried about branding.

Audience: I disagree. Even though you can criticize any mechanism, I don't know any other way you can go about it. God forbid the federal Government does it.

Audience: We don't need a third party to tell us. We have to accept responsibility for our own bodies. In my area, there's a group of grade-school and junior high-school kids that come in and teach people that are technophobes how to use computers. The kids have to learn patience. Libraries are great that way. Experiential schools can help.

Wooldridge: We can have many models for educating the public and should know the criteria by which you are judging your sites.

Audience: We need to help support those who are learning -- volunteer our web sites to be screened.

Silverman: The model of no evaluation is too scary. I don't know if you heard the story of a web site in New England, which was offering medical opinions. It turned out to be a 16-year-old kid.

Audience: We as professionals need to promote the method we employ to do that. Patients will tell you what they want.

Audience: I'm from Oregon. There's a lot of creativity here. I'd like to encourage people in this State to set up consumer health information sources. As we all develop our own web sites and service, if there are excellent services already in place, we should be finding ways to work with them as partners -- don't just link with them. When NOAH's funding runs out, they scramble. It would be a shame to see an excellent site fall by the wayside because of funding. The issue is very much on my mind. Linda, I was going to ask you -- we're interested in doing outreach to migrant clinics in Oregon. What about low-literacy access?

Cooperstock: I do have ways to find out. It is very difficult to convert low-literacy pamphlets to the web. If you display certain parts of the body, some cultures will object. You have to be aware of so many cultural differences. Some of us have to form a side group and do some brainstorming.

Audience: Anyone experimented with web TV?

Silverman: In the consortium, one of our partners was with Orlando, who had 4,000 users on web TV, but they had to shut down the site because the people only wanted to be passively entertained.

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