1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

"Redefining Roles, Engines of Empowerment: Community-Based Networks"

Wednesday, April 16
9:30 - 11:00 AM

Moderator: Nancy Milio, Ph.D., Professor of Nursing and Health, University of North Carolina School of Public Health, Chapel Hill, NC

Barbara Hau, Director, LaPlaza Telecommunity Foundation, Taos, NM

Jeromy McCarthy, Principle/Consultant, Fairhill and Co., Denver, CO

Mark Whittier, Director, Integrated Community Networks, Northern Telecom Ltd., Richardson, TX

Milio: We are focusing on the idea that people form networking institutions.What does this mean in terms of communities? What resources can be accessed by whom, and what steps need to be taken in order to receive funding for these systems?

This slide shows income levels of individuals making $15,000 or less with little access to the Internet, compared to families and individuals making $35-$50,000 who have more access. The overall view is that the Internet is geared more to higher income families than poverty-stricken people. The goal is to educate communities about the Internet and its use.

A study was done in nine cities in Ohio. Some had community laws and bylaws to be followed by local Internet organizations. Researchers also found that computer availability is mostly in the larger cities' schools and other organizations.

On screen is a Government Accounting Office slide showing Government involvement. The primary concerns are equity and funding. Here is a slide on "A Telemedicine Health Care Network," which shows how links are provided. This slide on "Public Health and Community Electronic Networks" shows, not only the links with State and local Government, but links with all organizations.

Question: How can we get with groups that have not formed a network? How do you get together with all other groups?

Answer: When Government groups and foundations are formed, they should be encouraged to invite organizations in on the planning, and not just token groups either.

A solution was raised by Susan Wyman from Housing and Urban Development (HUD) involving a support and initiative program that is 16 months old. It's in effect in schools with pupils in kindergarten through grade 12. The goal is to reach people who are hard to get in contact with for Section 8 housing.

Hau: The telecommunity I will talk about is located in northern New Mexico. This slide shows the overall population and the location of targeted audiences. LaPlaza Telecommunity Foundation is supported by Apple Computer. Some moneys come from the State.

Currently, they have a Kellogg's grant to develop a library. They also have a web site to provide information for the Kellogg's grant. Their classes are taught by volunteers, and training is given by providers and consumers on how to relay information to the web site.

Question: What are challenging issues?

Answer: There is a very visionary professional organization that brought the web site to Tulsa. It is a nonprofit organization with a $30-a-year membership to help with the maintenance of the web site. It was a volunteer organization, but now we have paid staff because of the funding. We do still need volunteers to keep the organization in operation.

Just some final comments. There was a fire a year ago in Tulsa, and there was a caller who wanted to know why there was no information on the web site pertaining to the fire. There is an organization that is trying to educate people about this site. They have meetings with the local housing authority, the American Red Cross, and the Department of Labor. There is also technical information they take into consideration, as it is not a financial issue, but an issue of technical problems People can bring their computers in once a month for maintenance and repair. It is not a big corporation in Tulsa. People think the Internet is free, and organization representatives had to reeducate the community to let people know there is a fee for usage.

McCarthy: The organizatoin I work for, Fairhill & Company, provides local information online. It is not free access. The system is Internet based. The Internet audience has been declining, and we are trying to find solutions to enable us to save the web site, which is accessed at a State level.

Health care organizations may also obtain information from the web site. People with disabilities are supported in use through a health care site person.

Major libraries will have resources because little of their funding comes from the Government. I have a really great person by the name of Sandy Parker to help with the piloting of our project.

Information on health care and medicine is being introduced in a preliminary stage right now. Another goal is to educate children in literature and science. We have had support from Federal grants and nonprofit organizations.

Some final comments. Our system is in a very early stage of development. The disability communities have had few grants. There will be a dozen more web sites created in the fairly near future. The people who are developing this system are willing to form a coalition so that they do not have to collect the same records and references over and over again.

Question: Is the Access Colorado Library and Information Network, Collection Development Committee a coalition where community organizations become involved?

Answer: Yes, they were the community network persons involved. But they were primarily librarians.

Question: Is there any economic development?

Answer: Yes.

Question: What are the methods in trying to find libraries that are community-help libraries?

Answer: They mostly would be in the Colorado community. They have an organization called CHILLS, which stands for "Librarians that are building libraries into their system."

On a side note, there is a program involving work with the Department of Labor staff placement. They have an HTML internship program that includes 180 hours of instruction, and you will receive a certificate once you have completed the program.

Whittier: I have worked with Integrated Community Networks for the last 15 years. The company makes boxes, telephones, and fibers that are sold to corporations. I represent a huge corporation with 15,000 employees.

My company's business is to make it happen. We have a program that was implemented within the last 5 years where we provide assistance in setting up networks. We don't just represent one group, but all health care organizations. The program is geared especially to practicing teachers. You not only have access, but share costs. It was developed to reach people in communities.

I see two reasons why people change: Vision and survival.

[Video Presentation]. As you can see, one way to articulate the vision is through video presentation. You have got to change to see Government applications.

On this slide of ICN Cornerstones and Foundation, you can see we need to work with people who are doing the networking so the vision materializes. The community coalition is absolutely needed to give the equitable and affordable access needed to make the vision work.

The challenge to the community is that community participation is needed, and one group cannot do it all themselves. Those who are trying to develop this networking system are presently working in the state of Minnesota to extend a $1 million-grant to distribute money -- not just to be spent on telephone lines -- but to be used for a good cause.

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