March / April 2006
Consumers as Partners
Empowering Patients at the Public Library
Involving patients in the safety of their care has been suggested as a strategy for reducing medical errors for some time. Patient-centered care was lauded as a key element of quality in Crossing the Quality Chasm (IOM, 2000). Recently, several initiatives Consumers Advancing Patient Safety (CAPS) and the World Alliance for Patient Safety, among others have raised the visibility of patient-centered care on the international, national, and organizational stage. Unfortunately, in the early, hectic days of the patient safety movement, patients were rarely approached as true partners in their own care. More recently, government agencies and non-profit organizations have begun the process of creating materials to assist patients in their interactions with healthcare providers (Entwistle, et al., 2005).
Patients and their families, as part of any system that delivers care, are increasingly aware of safety issues, but more can be done (Clancy, et al., 2005). Despite this heightened awareness, there are still few organized efforts at the community level to disseminate materials to the public or increase consumers' awareness of and knowledge about their roles in improving safety.
A unique set of Chicago-area stakeholders has developed a model to address this gap. Galter Health Sciences Library, Feinberg School of Medicine, Northwestern University; the Health Learning Center, Northwestern Memorial Hospital; the Metropolitan Library System; Zipperer Project Management (specializing in patient safety information initiatives); and Consumers Advancing Patient Safety are combining their expertise to bring patient safety information and awareness to consumers through an established community educational venue: the public library.
The Partnering for Patient Empowerment through Community Awareness (PPECA) program was launched in February of 2005 with support from the National Network of Libraries of Medicine Greater Midwest Region. Five community-based pairings of medical institutions and public libraries served as the test bed for the PPECA concept.
The project goals are to:
- improve communication among key players the consumer, the healthcare professional, and the librarian regarding patient safety awareness and healthcare information so that the best quality care is provided to patients; and
- improve consumer awareness about patient safety and healthcare resources so that, as patients or lay caregivers, they understand the importance of information and feel empowered to accept an active role as partners in ensuring optimal care. The components of the effort include:
- presenting consumer-oriented patient safety awareness programs in public libraries;
- compiling a tool kit and facilitator's guide that can be used by libraries and hospitals to help build patient safety partnerships to present awareness programming in their communities; and
- developing and maintaining a project Web site on patient safety that can be accessed at www.galter.northwestern.edu/ppeca/.
Presentation Content Modules
For the model, presentation templates were developed by a multidisciplinary team, honed over the course of the pilot project, and are now available on the project Web site as a starting point for individuals interested in doing similar programs. They are meant to provide a framework for each speaker and are designed to allow for inclusion of specific stories and initiatives related to each hospital/library pairing to personalize each session for its community.
Module one explores patient safety through the experiences of a family member who has lost a loved one to medical error. It is important to strive to have a consumer deliver this module, and evaluations reflected the effectiveness of this strategy. Through its Web site, PPECA is distributing the presentation created by the consumers who helped develop the program for organizations that would like to use it and are not able to find an appropriate speaker for this portion of the session. Module one, as it currently appears, centers on the personal story of the PPECA team member Roxanne Goeltz (Goeltz & Hatlie, 2004).
Module two is to be delivered by a hospital representative. It examines the complexities of the healthcare system, the processes that hospitals are improving, distinct clinical areas where errors can occur, and the steps patients can take to become more active partners in safety. By introducing the notion of the complexity of the healthcare system, consumers will begin to see that their active participation in their care will help the healthcare process operate as smoothly as possible. It was found to be effective for the speaker to connect an example of human error in a healthcare setting to something in everyday life that would be similar, such as the following story related by Renee Lertzman on the www.saferhealthcare.org.uk Web site.
One day in the late 1970s, cognitive psychologist James Reason was making tea, and the cat was clamoring to be fed. Reason efficiently opened the tin of cat food and put it in his teapot. The two components got mixed up. Both the teapot and the cat's feeding dish afforded the same opportunity putting stuff in. Reason suddenly realized a new research topic human error was literally under his nose.
Module three discusses how information can help empower patients to be safer and outlines how patients and librarians can work together to find quality health information from trusted sources such as MedlinePlus.gov and health-finder.gov. In the new world of patient safety, the roles of patients and doctors are changing. Resistance to this change, lack of skills to engage in the change, and the struggle to find the level at which each person is willing to engage can only be improved through the effective use of information. The role of librarians and the resources they make available will help in this transition as the more aware, informed, and participatory consumers are, the more they will look to the library and library resources for answers. The model for librarians providing this type of information is established in a variety of topical areas, and has also begun to emerge with a specific emphasis on quality and safety (Oermann, et al. 2005).
Program Experience to Date
- Six PPECA sessions were held in northern Illinois between February and May of 2005. Local professional contacts within leadership organizations in the area helped recruit facilities to be involved in the program.
- The PPECA Web site was launched in February 2005 (www.galter.northwestern.edu/ppeca/). The site includes speaker templates, reading lists, examples of handouts for distribution at each session, and the facilitator's guide to help other communities hold similar programs.
- Having a professional librarian participate on the panel raised awareness of this role, both within the speaker panels and for consumers. This creates an opportunity for an only-recently-recognized member of the patient safety team, and lays the groundwork for new patient-centered services and initiatives for both hospital and public librarians (Zipperer, et al., 2005).
- Planners found little consumer content in existence that addressed the complexity of care for the general public, so curricula for healthcare workers were adapted. This resonated with attendees. One participant wrote in her evaluation that "I never realized so much happened behind my doctor for him to be able to care for me." One physician who attended a PPECA presentation at the National Patient Safety Foundation Congress in May of 2005 stated that she felt the selection of consumer materials included on the Web site were very good and that she appreciated the instruction in the program to help patients prepare for their interactions with physicians by organizing the information they collect.
- Marketing and promotion capitalized on communications relationships and processes already established at each of the participating hospitals and libraries. The project team contributed to the promotional effort via its own professional network. Publishers were approached and contributed patient safety books, videos, and brochures to the libraries that were involved with the program to help build patient safety coverage in their collections.
- In general, marketing included a kiosk with handouts in the library, flyers, and library calendar announcements. Two front-page trade press stories were devoted to the program (Oermann, et al., 2005; PPECA).
A multidisciplinary focus group consisting of program partners investigated whether PPECA succeeded in facilitating trans-organizational partnerships and consumer learning. Key insights include:
- Marketing and promotion is a key component in generating a successful turnout for each presentation. Targeting funding for communications or media assistance, rather than relying on over-taxed public library or hospital communications and program staff would be an effective strategy.
- Simplification of the marketing materials is essential. The concept of patient safety is difficult to convey succinctly and with a positive spin. The general public, unfamiliar with the issue, may not automatically understand the terminology and may see the focus of the session as frightening rather than empowering.
The outcome of this project is the creation of a model to support the development of patient safety partnerships between consumers, public libraries, and healthcare institutions for a variety of communities. It is the development team's belief that information dissemination, awareness building, and consumer education on patient safety should begin at the community level prior to complex healthcare becoming a part of daily life. Through in-person access to information professionals, clinicians, and patients with distinct stories or knowledge to share, consumers will discover pathways for taking an active, informed role in their healthcare, thereby contributing to the overall safety of the healthcare system.
The program is now designed to be delivered in a variety of community venues: churches, rotary club meetings, and through other civic organizational gatherings. In addition, the program can be held in hospitals in association with their information or patient education programs. In November 2005, the PPECA model was used outside of the testing phase for the first time, in a public library without the assistance of the PPECA team. The hospital system that spearheaded the effort is planning to repeat the program several times in 2006.
Lorri Zipperer is the principal at Zipperer Project Management in Evanston, Illinois. She works with clients to provide patient safety information, knowledge sharing, and general project management guidance. She is also the Cybrarian for AHRQ's Patient Safety Network (http://psnet.ahrq.gov/) and a member of the Editorial Board of the Journal of the Medical Library Association. Zipperer was a Patient Safety Leadership Fellow in 2004-2005 and was recognized with a 2005 Institute for Safe Medication Practices "Cheers" award for her work with librarians, libraries, and their role in patient safety. She may be contacted at firstname.lastname@example.org.
Mark Berendsen is an education librarian at Galter Health Sciences Library, Feinberg School of Medicine, at Northwestern University in Chicago where he teaches information competency skills to students, faculty, and staff. While attending graduate school, Mark worked as an intern/archivist at the National Patient Safety Foundation. He may be contacted at email@example.com.
Linda Walton is associate director of the Galter Health Sciences Library. She is a member of the Board of Directors of the Medical Library Association and was a Leadership Fellow of the Association of Academic Health Sciences Libraries at the National Library of Medicine for 2002/2003. Walton may be contacted at firstname.lastname@example.org.
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Consumers Advancing Patient Safety. www.patientsafety.org.
Entwistle,İV. A.,İMello,İM. M., &İBrennan,İT. A. (2005). Advising patients about patient safety: Current initiatives risk shifting responsibility. Joint Commission Journal on Quality and Patient Safety, 31, 483-494.
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Goeltz, R., & Hatlie, M. (2004). Trial and error in my quest to be a partner in my health care: A patient's story. In B. J. Youngberg & M. Hatlie (Eds.), The Patient Safety Handbook. Sudbury, MA: Jones & Bartlett.
Goetlz, R., Walton, L., & Zipperer, L. Partnering for Patient Empowerment through Community Awareness: A hospital-public library collaborative program. Presented at the 7th Annual National Patient Safety Foundation Congress in Orlando, FL, May 6, 2005.
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Lertzman, R. (2006, January 3). From absent minded to error wise: A conversation with James Reason. Accessed January 31, 2006, at www.saferhealthcare.org.uk/IHI/Topics/SafetyCulture/Literature/AbsentMinded.htm
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Partnering for Patient Empowerment through Community Awareness (PPEC), www.galter.northwestern.edu/ppeca/
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Zipperer, L., Gillaspy, M., & Goeltz, R. (2005). Facilitating patient centeredness through information work: Seeing librarians as guests in the lives of patients. Journal of Hospital Librarianship, 5(3), 1-15.