Best resource centers shaped by user advice

Include patients, families in design and operation

To make the health information resource center at the University of Washington Medical Center in Seattle an inviting place, it was designed with input from people who had been patients, as well as their family members.

Ten patient and family advisors joined 10 staff members to form an oversight committee.

The resource center is only about 350 square feet, so much of the information is computer based. There are four computers with bookmarked web sites broken down by subject area so people can easily navigate their way through the information.

"My committee played an important part in picking which web sites we wanted to feature," says Andrea Dotson, a health educator with patient and family education services at the medical center.

It was the advice of patient and family advisors that resulted in breaking down the health information by subject matter as well. In addition, committee members provided greater insight into certain health topics or issues. For example, one of the committee members ran a support group for people with diabetes and knew a lot about the resources available and which would be most valuable to those with diabetes.

"It is great to hear from the experts. Those who are dealing with diabetes on a day-to-day basis know what other people who have the disease are looking for. That helps me figure out what information we should have," says Dotson.

Advisors in wheelchairs helped to make the space handicap friendly. For example, one computer station has adaptable equipment that includes such things as an adjustable table that moves up and down.

Family members knew it was important to have information on how to be a caregiver available, so a brochure — titled 50 Things Every Caregiver Should Know — is stocked.

While all ideas are heard, there were certain system-wide policies and procedures that had to be adhered to, says Dotson. For example, resources from pharmaceutical companies cannot be used; when evaluating credible web sites, committee members did not look at those established by drug companies to promote product.

In the beginning, the purpose of the advisory committee was to get the resource center up and running. Now the committee looks for ways to expand services and promote the center in all departments. Because there is no longer such a time crunch on projects, meetings are scheduled every other month rather then monthly.

"A lot of my volunteers are willing to spend time at home doing research on individual projects reporting at the next meeting," says Dotson.

To help facilitate work during the hour-and-a-half meetings, Dotson has divided the 20 members into three subcommittees, each with an equal number of staff and volunteers. They include evaluations and outcomes, materials and selections, and operations and staffing.

"We try to stick as close to the agenda as possible during meetings. Some of the time is spent in subcommittee groups discussing individual projects, and each group reports to the team at the end of the meeting. In that way it is easier to get work done," explains Dotson.

Members of the committee are mailed an agenda one week before the scheduled meeting and also are called to see whether or not they can attend. Those who attend the meeting are given a $15 stipend to help with childcare and/or transportation expenses.

Patients and family advisors at the University of Washington Medical Center are asked to make a commitment of at least one year. Volunteers for various committees and projects are identified in two ways. A brochure about volunteering as a patient and family advisor is distributed throughout the medical center so people can offer to participate; also staff members make recommendations.

Once a person is identified, he or she is invited to attend an information forum to learn more about the various roles. Those who volunteer are given an orientation for the role selected and also attend a general volunteer orientation that covers such issues as patient confidentiality.

Having patient and family advisors involved in the decision-making process of the health information resource center is extremely beneficial, says Dotson. "We are here for patients and family members, so we want to hear what will make this place successful and user friendly and a place where people want to come to find credible health information," she explains.

Sources

For more information about running a health information resource center with the aid of patient and family advisors, contact:

  • Andrea Dotson, health educator, patient and family education services, University of Washington Medical Center, 1959 NE Pacific St., Box 358126, Seattle, WA 98195. P hone: (206) 598-7448. E-mail: dotsona@u.washington.edu.