Topics - Patient and Family Resource Centers
As part of its Pinwheel Guidance Series, the Institute offers the publication, Creating and Enhancing Patient and Family Resource Centers, and videotape, Patient and Family Resource Centers: A Visual Journey. The guidance publication addresses a range of issues to consider when starting a patient and family resource center, as well as many examples and sample documents.
The video presents visual profiles of five resource centers. It presents the rationale for patient and family resource centers and captures the perspectives of patients, families, center staff, health care professionals, and administrative leaders. These materials are excellent tools for incorporating this aspect of family-centered care into hospitals and other health care facilities.
Creating a Patient and Family Resource Center: Key Considerations
- Contact administrators, staff, and patients and families in your hospital or clinic who might be interested in a patient and family resource center and ask whether they are interested in working on such a project. Include community members, too.
- Bring together a few of the interested people to share ideas. Keep discussions informal and relatively unstructured. Encourage participants to discuss their perceptions of patients’ and families’ information needs and ways to meet them. Be sure that patients and family members from a variety of backgrounds are well represented in planning from the very beginning.
- Review the literature about resource centers.
- Determine whether there are family resource centers in your community. If so, several members of your discussion group can visit them to learn what others are doing and discuss possible collaboration.
- Think in broad terms about what will be needed to create a family resource center in your hospital, department, or clinic. Where will funding be obtained? Who will be the project’s allies in the administration or community? What might be potential barriers?
- Establish a planning or advisory group to carry the project’s work forward. Make sure that membership is well balanced among various constituencies. Build a network of clinical advisors who will help ensure the accuracy of information available through the center.
- Develop a vision, mission, or statement of core beliefs to guide planning and decision making.
- Consider what services are essential to your resource center. Unless substantial financial support is available, it will be necessary to start modestly. Many centers have found that such an approach is advantageous, because it enables them to expand services gradually in response to the needs of their constituencies ÷ patients, families, and the community.
- Decide what resources are needed in the initial collection (i.e., books, journals, audiovisual, and computer-related resources). Medical librarians can be helpful at this stage.
- Consider where the resource center will be located. The two key factors are accessibility to users and sufficient space to comfortably accommodate services. Then plan the layout and select furniture, equipment, art, and signs.
- Determine the best system for classifying and cataloguing the materials in the center and ways to keep track of their use.
- Seek advice from the hospital’s information systems department concerning electronic learning technologies. As your budget permits, determine the most appropriate hardware, software, and communications systems.
- Develop a staffing plan. Consider employees and volunteers÷their responsibilities, skills and training, and desired qualities.
- Draft a budget. Include both start-up and operational costs. Outline a process to secure funding.
- Bearing in mind the project’s core values, create a set of resource center policies and procedures.
- Discuss public relations/marketing. Identify a variety of ways to promote the resource center.
Evaluation and Expansion
- Create a system for learning how well the center is meeting the needs of patients, families, and other users.
- Use patient, family, and community feedback to justify the center's programs and priorities and improve its operations.
Additional On-Line Resources
- The Consumer and Patient Health Information Section (CAPHIS) of the Medical Library Association
- CAPHIS has both a website and a listserve that can assist patient and family resource centers:
- The general CAPHIS web address is: http://caphis.mlanet.org
- Another useful CAPHIS web page, entitled "How do you set up and run a Consumer Health Library?" is at: http://caphis.mlanet.org/resources/index.html
- An unmoderated discussion list created for people interested in consumer and patient information can be accessed at: http://caphis.mlanet.org/activities/Caphis_listserv.html