Brennan, Patricia Flatley
1. Objectives
Consumer health information producers are generally universities, commercial information producers, and health institutions (Guard, et. al., 1996). Some of the information these entities provide is research oriented while other information is marketing and/or business related. The role of medical libraries is to act as broker of the health information—traditionally to meet the information needs of health professionals. However medical libraries and university health libraries continually expand their patronage to consumers seeking health information effectively changing their role to accommodate the health information needs of consumers (MLA, 1996; Lynch, 1999; Morris et.al., 1997). While attempting to meet the health information needs of the public, medical libraries and university health libraries are doing so in an ad hoc fashion—case by case, librarians will answer consumers’ health questions in person or over the phone. Consumer health libraries within hospitals and other area health service providers more directly meet consumer health information needs. These libraries offer health information and health education to patients and their families who receive care at these institutions. Generally, these resource libraries provide commonly sought health information—disease specific, drug or health promotion information. Services provided usually include access to books, pamphlets, videos, and internet access to national and state health resources.
The kinds of information consumers seek and the ways that they get information related to health and health care varies widely. While there are several sources where consumers can receive health information, (medical libraries, local libraries, consumer health libraries at health institutions, commercial, federal, and state information over the internet), there is no one place for consumers to go to determine what sources are reliable and best meet their health information needs, particularly within the context of where they live and receive care. We believe that the basis for health exists within the context of where people live and work—their communities. Essential resources within the community (not limited to health resources) and general community and social cohesion exists to support health; and information technology provides tools that can leverage this support to promote healthy communities (Milio, 1995). It is essential then, that health information solutions be developed and anchored within a community-centered model, rather than an institution-specific model.
We have a unique opportunity to begin to address this challenge in the Dodge-Jefferson Community of southeastern Wisconsin. Approximately seven years ago, Dodge and Jefferson counties recognized the need to work jointly to assess the health indicators across both counties. The city of Watertown, bordering both counties, provided the opportune place to coordinate these efforts formally. The two counties established the Dodge-Jefferson Healthier Community Partnership (DJHCP), a non-profit organization whose mission is to improve the health status of individuals, families, and communities in Dodge and Jefferson Counties. DJHCP membership spans both counties and its Board of Directors is well representative of area health and community organizations. Within this setting, we propose to develop an information technology solution that uses a community-centered, community-controlled model of health information brokering. This solution will be jointly developed between the UW-Madison and the Dodge-Jefferson Healthier Community Partnership, and will be managed and supervised by an established community organization and a board of community health professionals and citizens. The solution developed is intended to be a direct community health service to the citizens and health providers of Dodge and Jefferson counties providing relevant federal, statewide, and local health information to the public directly and health information evaluation services to health institutions in the community.
The specific aims of this IADL proposal are to:
1. Demonstrate, through a prototype, the delivery of a community-controlled digital health information service to the Dodge-Jefferson Community.
This service would be managed and evaluated by citizens of the Dodge-Jefferson Community and would provide federal, state, and locally relevant health resources via the WWW, available to community members from their home computer, local library, workplace, or school.
2. Create a plan for expanding, and sustaining a full-scale service.
To support this kind of service on an ongoing basis, it will be necessary to create a business plan that would encompass financial plans, service maintenance and hosting plans, and community ownership and management plans.
3. Demonstrate the benefit of this service to the community.
Demonstrating the benefit of this service is a two-fold process—marketing and evaluation. Marketing the service for increased usage will be important, but not enough to demonstrate its benefit to the community. It will be important to evaluate the usability and the cost benefit of the service as well.
2. Background
2.1. Performance Sites
Wisconsin is largely a rural state in which most people live in small communities and receive health care services from a variety of health care providers, in fact there are only two population centers of fewer than one million residents each (Milwaukee, Green Bay). To efficiently reach rural communities and their citizens, we have partnered with a community health planning group—the Dodge Jefferson Healthier Community Partnership (DJHCP). This organization represents the counties of Dodge and Jefferson, located 50 miles east of Madison. DJHCP is a well established regional health planning group and is a 501c3 organization designed to ensure cooperative assessment of health needs and integrated responses to those needs in local communities.
The University of Wisconsin-Madison was established in 1848 as a land grant institution, the UW-Madison is the flagship of the UW System that includes 13 campuses and 13 two-year centers. It is one of two PhD granting campuses. The University is guided by the "Wisconsin Idea", that the boundaries of the campus are the boundaries of the state. The mission of the UW-Madison is to create, integrate, transfer, and apply knowledge; faculty and staff are expected to participate in public service activities that share their work and expertise with Wisconsin citizens.
The University of Wisconsin-Madison Health Science research and learning environment extends beyond the borders of its campus making opportunities for health science research wide-ranging and numerous, and needs for information technology infrastructure and coordination vast. Indeed, the “Wisconsin Idea” is a 100-year old philosophy guiding the campus directing that the borders of the campus are the borders of the state. Since the University benefits from the high rate of research participation among Wisconsin citizens and the UW Health Sciences strives to live up to this tradition by providing clinical training and conducting clinical research at sites throughout the state.
The UW Health Sciences Libraries serves the health information needs of the UW health sciences schools, their faculty, staff, preceptors, and students. It also serves UW basic and clinical researchers and affiliated health care practitioners, and other health professionals through the library’s active participation in the National Network of Libraries of Medicine (NN/LM). The library’s outreach services are heavily used, with 35,000 items loaned and borrowed from around the state and region each year. Last year the library taught 295 workshops and classes reaching 2275 health professions participants. The Health Sciences library is in the process of redirecting efforts toward providing services with real time electronic reference assistance, streamlining resource request and delivery procedures, educating users regardless of access point, and exploring new technologies to integrate information literacy skills curriculum. Projects the library plans to pursue in the future include: application of intelligent portals for desk top organization of resources, development of web-based profiling tools, electronic delivery of tables of contents of journals only available in print, development of information value models, and automatic linking of citations in databases to document delivery request forms.
The UW Health Sciences Libraries currently have no emphasis on providing consumer health resources, but they are interested in exploring better ways to serve the health information needs of the people of Wisconsin. They do not buy print or audiovisual consumer health resources. The UW General Library System purchases access to one database that has a consumer health focus called "Health and Wellness Resource Center." The state library system, BadgerLink, provides all Wisconsin citizens with access to a similar database called "Health Source." There are also health resources within other databases that are available via BadgerLink. UW Health Sciences Libraries provide individual, ad hoc consumer health services when individuals visit or call the library and request information. Librarians will typically show consumers electronic resources they can access from their home like Medline Plus and also, if they are physically present on campus, electronic resources they can access only from campus. Ms. Norcross, Interim Director, has a professional interest in exploring possibilities to include a consumer health vision for the Health Science Libraries, however to date, no plans are being made to mount a UW-Madison consumer health resource. Extending consumer access to campus electronic resources would be extremely costly and therefore unlikely to occur. Therefore it would be more effective organizationally and more cost effective to develop a community-based and community-controlled consumer health service tailored and supported by the community.
The UW-Madison School of Nursing, has a commitment to collaborative interdisciplinary research to foster patient centered interventions is reflected in the mission statement School of Nursing, which has been a driving force in developing faculty and programs to that advance nursing science through research and practice. The School has identified the clinical focus areas of community-based and rural health care nursing; maternal-child nursing; and psychophysiologic response, as targeted areas for our academic planning. The project described here will afford many training and research opportunities for clinical practice and research trainees at the School of Nursing.
Dr. Brennan, PI of the proposed project has a long-standing program of research in Consumer Health Informatics. Brennan maintains two research laboratories at UW-Madison that encompasses her HealthSystems Lab—one at the School of Nursing and the other at the College of Engineering. These labs house research focused on designing and evaluating home care community computer systems for use by patients. Projects range from the development and evaluation of computer networks as a mechanism for delivering nursing care to homebound ill persons and their caregivers to assessing the impact of patient-centered computer technology on the health outcomes of persons following coronary artery bypass graft surgery.
Dr. Brennan’s most recent projects include conducting a three-year strategic information technology planning process across the UW Health Science Schools (Wisconsin IAIMS); exploring how individuals and families manage health information in their homes (Health @ Home Study); investigation of the usability of secure email use in clinics (PKI usability project); and is developing information tools and resources to support self-care and health self-management (HeartCare and CHF studies LM 6249). Research conducted here is supported through the University of Wisconsin-Madison College of Engineering and School of Nursing, and through extramural grants from NIH and industry. Section 2.2 describes some these projects relevant to this proposal in more depth.
The Dodge-Jefferson Community is composed of two rural counties between the larger metropolitan communities of Milwaukee and Madison (see map). Dodge county has approximately 82,422 residents with a population density of 93 people per square mile, with 5.7% of the individuals living there below the poverty level. The non-white population is approximately 4.3% of the population. Jefferson county has approximately 73,375 residents with a population density of 132 people per square mile, with 5.2% of the population living below the poverty level. The non-white population is approximately 3.6% of the population.
Although similar in the health needs of their citizens, it is important to note that the two counties also have distinct characteristics, especially in how the counties organize their health services. For example, in Jefferson County, the Health Department is a freestanding department whereas in Dodge, the Health department is housed within the County Human Services and Health Department. Despite these differences, the two counties appreciate the benefits of partnership and cooperation and remain an equal partner in the Dodge Jefferson Healthier Community Partnership (DJHCP).
The Dodge Jefferson Healthier Community Partnership (DJHCP), our community partner, identified the need for community-level health assessment and response. Collaboration with DJHCP offers a unique opportunity to apply information technology solutions to consumer health in a manner that is most likely to be responsive to the local communities and acceptable to them. Dodge/Jefferson Healthier Community Partnership, Inc. (DJHCP) is a 501c3 organization designed to improve the health of all residents of Dodge and Jefferson counties. Its mission is to improve the health status of individuals, families, and communities in Dodge and Jefferson Counties.
In 1995 a group of individuals from public health, human services, the University of Wisconsin Extension, law enforcement officials, area hospitals, and schools came together to form the DJHCP. The group recognized the potential for the process to make positive change – change that would not only improve health status, but also address social issues and ultimately reduce the cost of health care services. In 1998, DJHCP became incorporated and in 2000, DJHCP hired its first full time Director of Operations.
Over several years, the DJHCP has grown to a board structure of twenty-one members (see table). Ten members are mandated in the articles of incorporation and eleven are members at large of the community selected by the membership of DJHCP. The partnership consists of over one hundred members, including representatives from local libraries and community citizens (see list of Community Members in appendix). The DJHCP includes all three of the Hospitals in Dodge and Jefferson Counties. The providers affiliated with these hospitals are represented in DJHCP activities. In addition, Watertown Physician Hospital Organization represents 48 multi-specialty physicians and have active contracts with over twenty HMOs, PPOs, POSs and standard insurances through local and national networks. Providers from the public health departments are represented in DJHCP activities, as well as the public schools and the local libraries.
DJHCP holds monthly meetings in Watertown, Wisconsin. Watertown is unique in that it straddles both Dodge and Jefferson Counties. It represents a fair and convenient location for the headquarters and monthly meetings of DJHCP. DJHCP is housed within the Watertown Health and Wellness Center. This strategic location is also home to Watertown Family Center, the Woman’s Center, Jefferson Head Start, and Rainbow Hospice.