1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Customizing Information 5: "Long-Term Care and Disability"

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

Moderator: Arlette Lefebvre, M.D., Founder and Past President, Ability Online Network, Toronto, Canada

T. Bradley Tanner, M.D., President, Clinical Tools, Inc., Pittsburgh, PA

Anthony Margherita, M.D., Assistant Professor, Neurology and Orthopedic Surgery, University of Washington, School of Medicine, St. Louis, MO; Director, The Rehabilitation Learning Center

Linda Roman, CEO, Help Innovations; Lawrence, KS

Tom Koch, Research Associate in Bioethics, Hospital for Sick Children, Toronto, Canada

Lefebvre: I am delighted to be here.

This panel's general focus is on the use of new resources to deliver data, support, and supervision and to assist those living with limited physical and mental disabilities and their family members. The speakers have diverse client bases: mental health, spinal cord injury, elder care, child development, and chronic illness. All are developing online and web site resources to assist persons with physical or emotional disabilities.

I have worked in Toronto for 22 years in child care, clinical research, and health promotion. I work with children, trying to boost their self-esteem. About 8 years ago, I discovered I could connect kids to great role models. Computer technology can open doors for children with disabilities. One in five people in the United States has a disability. But I worry about accessibility for disabled persons. People with cerebral palsy, blindness, and other disabilities have trouble getting a hold on the data. The patient and the role of the health provider have changed. No longer is the patient an invalid.

With the "traditional patient" we used to see a "top down" approach, with doctors as the only authority and patients as passive, dependent individuals. Traditional professionals held the view that doctors know best; a physician learns from other professions; publishes in peer-reviewed journals; and is expert at driving texts. At Ability Online, kids with disabilities or chronic illness are linked to other kids and adults who care. Via electronic mail, Ability Online connects children from hospital, home, or school with old friends and new. They are joined with classmates and family back home; people with the same disability, or no disability at all; as well as role models and mentors who encourage and support them. Thanks to some very dedicated people, Ability Online is absolutely free to anyone who has a computer, a modem, and a phone line. Founded in 1992 by a child psychiatrist and a computer specialist, Ability Online is monitored by volunteers and professionals from a variety of backgrounds. Presently there are three hospitals participating in the United States. The health care provider need not be the expert, and children can actually aid in the care of others. Sometimes individuals with disabilities can be the best support for parents who have children with disabilities. People with similar disabilities can give emotional support to others. Family relations can be improved with the use of a modem. If we wait for questions to come from health consumers we can give a better reply. In conclusion:

• self-helpers prefer two-way communication,
• self-helpers and professionals, together, can best meet the needs of patients,
• with integrated access the latest and best medical information is available.

Tanner: [Demonstration of the CD-ROM developed by Dr. Tanner]

With this CD-ROM, I built a base in patient education in schizophrenia and senior care. I have a very biological focus, but if all you do is push pills it doesn't work. I am trying to develop tools for caregivers, often a spouse -- to assist them in the situation where they are forced to manage care. A problem is that the older the user, the more difficult it is to convince him or her to use the CD-ROM and technology for senior care options. People over 65 years old have more difficulty in utilizing the software. People must be assisted in understanding how to use the technology. The key is to make things very clear. Another discovery is that people were unimpressed with menus of numerous options. I have heard them say that they do not want to be bothered with many menus of choices as seen on the Internet. I have tried to respond and reconfigure the software based on the feedback of initial users. Sometimes an interface is going to have to be used, but I don't have much confidence in the Internet. There are many pitfalls associated with this system. We have learned a considerable amount to assist us in avoiding these pitfalls:

• Employ young people who are enthusiastic and have them learn the skills. Energy, enthusiasm, and interest in health make a big difference.
• Put some energy in keeping up with the new technology. Find out what's out there and what's new. Beware not to take on everything new at once.
• The team environment is vital to success. Without a team, it cannot be sustained.
• Look at the skills required; it is worth investing in the technology instead of shopping everything out. You can learn a lot yourself.

I have had people ask me if I thought the seniors would be using this technology. In my experience I can say that half of our users are spouses and half are other family members. Most primary caregivers are spouses or family members rather than the seniors themselves. Outpatient care is one thing we're looking at, but we found that after the crisis most people do not seem to use the software.

Margherita: A multimedia health information system will facilitate the dawn of an information revolution in medicine. Such a system can facilitate the constantly advancing study of medicine, as present curricula for medical students cannot meet their information needs. This information system may support a move toward "consumerization" of health care, as well as reduce delivery costs.

In consumer health informatics, the "datasphere" continues to grow beyond the controls of organized medicine. Continued growth of online "self-help" communities will lead to unprecedented access to information.

I will now discuss The Rehabilitation Learning Center (RLC), located on the web at http://weber.u.washington.edu/~rlc/. The RLC is a multimedia learning environment designed to instruct individuals with spinal cord injuries about their conditions and empower them to become active participants in their rehabilitation. At the Center, we conducted a multimedia technology demonstration. Volunteers engaged in development of the project, which employed a multi-tiered implementation strategy. We also integrated client tracking and database functions.

We found that we had many questions and challenges to consider, such as, is multimedia the next wave? What are our needs? Are they more speed, more power, more disk space, more bandwidth?

Also to be considered, what will be the resulting consequences of our efforts? Will we get more delays, more frustration, more cost, and more unfulfilled promises?

The main problems with a multimedia consumer health information system are: bandwidth, the size of the pipe (local/networked), file size, (RLC demo video takes up 18MB of disk space for 15 seconds), and movies won't fit on CD-ROM (Do we use DVD, which is a larger storage system?). Other problems and issues are access (gridlock on the info superhighway), multiple possible deployment strategies, functional/computer illiteracy, intrinsic limitations of computer-based training, and prohibitive development costs.

There are issues involving delivery and monitoring the client. How to deliver the information? How do we track/test the users’ progress/knowledge? How can we address customization? How is ethnic/cultural diversity handled?

We must identify the right deployment strategies. Do we use informational kiosks, web sites, shrinkwrap self-help (shovelware)? Do we work at the bedside?

Budget is a major consideration. Also, you must include all the players when developing the system. Be aware that content expertise is important, but that it is not enough to ensure a good outcome. Also to keep in mind during the development stage is that design, media selection, and delivery technology will ultimately drive your timelines

Going back to the topic of budget, in developing our RLC, we had a target budget of $250k and received $160k in grants and gifts. The actual real cost totaled nearly $400k.

The way we approached the analysis was by interviewing experts on subject matter, researching available materials, pulling from focus group meetings, and by returning for final instruction on the design.

In our analysis we conducted interviews with experts on subject matter and researched available materials. We pulled from focus group meetings and received final instruction on the design.

Our focus when developing a design was to stay simple and avoid clutter, using minimal text on screen. We had high-contrast colors and made sure the screen was viewable in varied lighting. We created a soft look, had minimal mousing, and understandable icons. We set up a clear rollover/click state, and we developed the design to encourage exploration.

Our development priorities were to fine tune it, with an emphasis on getting all components to work together -- and also on confirming navigational links.

We prepared for implementation by planning for single station/single users (SME/client expert). We planned for a networked environment and established database links and a test.

Testing entailed analysis of user experience, evaluation of system effectiveness, and methods to determine strengths and weaknesses. To further identify customization needs, we continued to expand user base and to learn from how these people utilized the system.

In conclusion, I can say of our experience, "baptized by the fire, I wade into the river that runs through the promised land. I hope it doesn't take the rest of my life until I find what it is that I'm looking for."

-Billy Joel River of Dreams

Thank you.

Roman: I am not a technologist. I perceive some needs in my community. I know that our elderly would prefer to stay at home. I run a nursing home. There really is not enough funding to go around to do what we need to do for our elderly. Our elderly population is growing.

Help Innovations, which was founded in 1993, delivers health care to patients in their homes over its ResourceLink system, which provides two-way interactive television via cable, ISDN, or telephone lines. Typically, the ResourceLink Tele-Home Health care service is located in a health care facility. The base station caseload is managed by a registered nurse. During a visit, the nurse assesses the patient's vital signs, medical status, supervises the medication routine, and provides patient education. I believe that the United States can save $449.4 million by reducing by 5 percent the numbers of elderly who enter nursing homes (74,900 x $6,000). We can save $1.84 billion in Medicare, Medicaid, and insurance savings by substituting this interactive health information system for 10 percent of chronically ill patients who are receiving skilled home health nurse visits.

We provide home health care from interactions between patients in their homes. I have a 6-minute video to show you how Health Innovation ResourceLinks works. Two-way community health care links, vital statistics, and medication can be administered cost effectively. Patients can see their doctor within their own home and can gain security. Doctor visits, hospital fees, and nursing home costs can be reduced. ResourceLinks can be an alternative for people requiring medical counseling, doing away with the high costs of traveling to a physician every time there is a basic problem.

There are base stations and workstations located in the hospitals, and care management software is available. For the patient, using this system is like watching TV. And people can read digital equipment easily. From a single resource station a nurse can visit three times the number of patients who require daily contact with a health practitioner. There is a rise in medical care, a decrease in traveling costs, and patients can administer their own medication. It prevents hospitalizations because of the daily contact with medical personnel who can more readily detect problems with patients who wish to stay home. Patients feel in less danger and that they are not alone. Another advantage is that other family members need not reorganize their schedules to provide care for elderly patients.

Every patient has preprogrammed interactions. For most individuals on the system, by the second visit, they actually get excited about the visit and they beautify themselves prior -- a sign of better self-esteem. It appears that when people are in control of their care they heal faster.

Koch: I am sight impaired, and I am Canadian. I work in bioethics. I have a health and fitness discussion forum on CompuServe about health care and the elderly. I also wrote a book on news and information and analyses of data. I write material for children as well.

Marshall McLuhan insisted that the medium is the message, but I have an opposing viewpoint. What drives expansion is content and the ability to relay the message with enormous specificity and directness to groups and digital library resources. Popular acceptance of these technologies is driven, not by the medium's attraction, but by the quality and content of data. This evolution speaks to the historical struggle for greater public access to unbiased and unmediated data. We need to clear up some misconceptions. It is about a series of challenges that we all face. It is not about you unless it is about your business. I don't want the doctor to give me a choice of beta blockers when I go into surgery. We shouldn't assume the procedures for those who are impaired in some manner.

If you think the medium is the message, try having cybersex for a year. When TV was introduced, people used to stare at the test pattern on the screen because they were so excited about the new technology -- then there was a drop off. Virtual reality? Virtual or not, sometimes the visits from others cannot be substituted by virtual interactions. Needs vary according to the patient. One thing we know is that the patient has almost always had an informal network. Fifty years ago, doctors knew how to use the resources within the community. There are still barriers, including lack of knowledge. In our work with our clients, it is important to ask about our patients' limits. Let us not place ourselves too high and call ourselves the information provider. The physician on TV is better than no physician at all, but cannot replace the individual who actually visits occasionally.

I will address isolation. For the fragile and their caregivers, isolation in itself is a health risk. By using technology we can aid, but technology cannot replace humans.

Audience: Shouldn't bringing medical technology into the home improve health care?

Lefebvre: Many people cannot afford the Internet, so we have made our system accessible, from the Commodore 64 on up.

Koch: Many people cannot even afford the proper wheelchair, let alone the Internet.

Audience: Marketing these home health care services involves getting the ideas into the home. There are a lot of telemedical care providers, but they are marketing through HMOs.

Roman: Actually, we are trying to get the technology into the home and bypass the HMO, as the latter is more expensive.

Koch: The telephone and TV have become necessary and are state supported. That is one of the few things that Newt Gingrich and I agree on. These will be absolute necessities for all citizens and will be paid for by the state since the development of medical technology is growing at such a rapid pace.

Margherita: People don't want to only be recipients. They also want to learn how to become self-sufficient, and when it comes to the marketplace, we are looking at how to reduce cost.

Audience: Isn't it rather late to wait for the emergency to occur? Shouldn't it also be about prevention?

Audience: Forty percent of the 10,000 people who call us in California are not in the acute care stage. Actually, people have stopped going to health care professionals after 4 to 6 years of dealing with a condition. Most of our referrals come from medical practitioners who do not know how to educate the long-term, chronic patients.

Koch: It is true that many people don't have the resources to get the support needed to make changes in their home care. If the medical profession stays along the fee-for-service route, we won't be able to give solutions.

Audience: Are we saying that we must respond to demand, so some patients will be out of luck? My concern is that we are not responding to the needs of the patient, and technology is replacing human intervention.

Lefebvre: Well, we are trying to expand health care facilities for the patients.

Roman: I think there is a presupposition of what is best for the patient. I know what is best for me, and you know what is best for you.

Audience: I just think that people should not be pushed to accept in-home technology instead of person-to-person care.

Margherita: There was resistance from those in the health profession because, for example, the therapist stated that there are a myriad of ways to conduct certain medical procedures. We are trying to teach and explain the proper way to perform certain home care skills that are not based on one single model, whether it is originated from the patient's own ideas or from the caregivers.

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