Brennan, Patricia Flatley

Intel Research Council Research Proposal Submission

Advanced Technologies for Health @ Home

Identification

Title of proposal: / Advanced Technologies for Health @ Home
Name of principal investigator: / Patricia Flatley Brennan
Name of university or institution: / University of Wisconsin-Madison
Department: / School of Nursing
Date of submission: / May 4, 2001
Technical committee: / COMM

Research Objective

Problem

Within any one community, there are several health-related entities—the public health authority, clinics, hospitals, pharmacies, schools, where individuals receive health services, requiring them to manage a multitude of health care information from a complex set of sources. Additionally, individuals are playing an increasingly important and central role in managing self-help, maintaining self-care and assisting with disease management by having and knowing how to utilize the appropriate health information and tools (Kwiatkowski & Brennan, 2001). Electronic information resources and tools are becoming increasingly available via the Internet for these purposes. The devices, content and delivery systems for these resources, however, have been developed without consideration for the context of the individual within their home and within their community. Innovations for health that have been developed for use in the home have primarily focused on the aging population and generally are targeted toward environmental assessment for the prevention of hazards within the home. There is a call, however, for new theoretical models of the home environment that consider the critical components of the physical and social environment relevant to health within the home (Grant, 1989). We submit that this call needs to be taken a step further to encompass the community environment.

With respect to health related IT devices, these innovations are generally modifications of work place solutions, with built-in presumptions of work and the work-related environments rather than how individuals manage their health information within their homes. For example, the telemedicine and home care systems have had great success in providing health-specific support for patients—they are developed for a very specific purpose, generally use work adapted devices placed within the home, and are scalable only for a defined population of users. Additionally, these devices must be utilized according to the physical and electronic specifications of the device, limiting placement and use within the home. The effectiveness and ease of use of these devices as a result of these limitations is not known—the challenge of determining the best placement, size and method for delivery for ease of use is one that has not been answered.

Health resource content and delivery systems solutions tend to be provider-focused and institution-centric rather than individually focused or tend to be consumer-specific, yet with little regard for the home environments and communities in which people live. They currently focus on either general e-health information or health-specific support. For example, the emerging "e-health" and clinical website approaches are grounded in creating a "web-presence" or health information "push" from extant organizations—they are intended for a broad audience and are not context specific. These circumstances create a disconnection between a consumer’s health-related needs and desires and what his or her health care community affords. Health IT innovations for consumers of health information must focus more toward home- and community-centered information solutions in order to meet the information needs of health information consumers.

One of the major challenges in resolving these issues is the widely distributed nature of health care information systems coupled with the increasing need for dynamic information exchange between consumers and the various entities of their health care community. Institutions create, fund and maintain their own health information systems that are primarily managed from a single site. These systems contain unique language standards, access privileging systems, and patient record management models. Single-site information systems, while geared toward the needs of an individual institution, fail to meet the dynamic communication and information exchange needed to support the health of individuals from their communities and within their homes.

Another challenge is the varying use of health resources by both patients and providers, and the lack of dynamic communication pathways to keep patients and providers connected in a meaningful and efficient way. Patients are taking more responsibility in managing their own health care using electronic health resources on the web, while clinicians utilize in-house integrated information systems for documenting clinical information and linking to outside information resources to support their work. Generally, patients and providers have no dynamic means to communicate with one another about all of this information, and so they come together with diverse sets of health information creating inefficiencies between the individual, their providers, and the health community at large.

The foundation for tackling these issues exists at the level of the community. The establishment and cultivation of community partnerships with universities and/or industry partners will ensure that technology solutions build upon and enrich existing community-level health care commitments.

Background

Current Research

Consumer health informatics (CHI) encompasses a variety of applications of computer technology employed to meet the information, self-care, and health service participation of patients, family members, and well persons. CHI applications encompass health related web sites, CD-ROM and mobile/wireless computing tools that provide patients with health information, allow them to record and sometimes analyze relevant clinical concerns, and communicate with peers and professionals (Kaplan & Brennan, 2001). Some CHI applications assist patients in making complex decisions (Balas, 1997 Gustafson, 1999), while others provide timely coaching and advice on clinical management of patient problems (Bennett, 2000). Evidence exists that access to and use of CHI improves patient decision making (Brennan, 1999; Balas, 1997), reduces the burden of illness (Brennan, et al 1995), increases adherence to clinical care protocols (Gustafson, 1998). Dr. Brennan’s HeartCare project (discussed in detail below) demonstrated that access to a web-based tailored coaching service helped patients recover faster and with fewer symptoms than experienced by those using a low-tech intervention.

The proposed study advances Dr. Brennan’s current research efforts in several ways. Dr. Brennan has a 15-year history of NIH-funded research designing and evaluating home care community computer systems for use by patients. She directed the ComputerLink project involving the development and evaluation of computer networks as a mechanism for delivering nursing care to homebound ill persons and their caregivers. The projects were evaluated in a series of NIH-funded randomized field trials testing the effects of ComputerLink for persons living with AIDS (R01 NR02001, Brennan, 1998; Brennan, Ripich, & Moore, 1991; Brennan & Ripich, 1994) and caregivers of Alzheimer's disease patients (R01 AG08614, Brennan, Moore, & Smyth, 1991, 1992, 1995). Initial findings supported the feasibility of using computer networks in home care and provided evidence of utilization patterns, impact on participant's social isolation, and preliminary experience with delivering tailored nursing interventions in an electronic medium. Secondary analysis of the original data set established the covariance between the use of computer network and health and social services (Bass, McClendon, Brennan & McCarthy, 1998) and demonstrated the positive effect of information delivered via computer networks (Bass et al., 1998). This research also revealed important issues about the use of electronic devices in the home—the devices themselves were designed for use in offices, therefore their size and electronic specifications placed limitations on location and ease of use within the home.

Dr. Brennan currently directs the HeartCare project (NLM 6249, Brennan et.al.,1998), which is assessing the impact of patient-centered computer technology on the health outcomes of persons following coronary artery bypass graft surgery. One hundred and fifty patients recovering from CABG surgery were randomized to one of three conditions (tailored, WWW-delivered post-CABG recovery information and communication; an audiotape intervention, or usual care). Preliminary results indicate that patients with access to HeartCare recover faster, and with lower intensity symptoms, than do those in the other interventions. Unlike ComputerLink, this study utilized a device designed for consumer use within the home namely, WebTV. This was an attempt to address the device limitations posed in the ComputerLink study, however it has not answered these issues, rather it has opened the door to new inquiry in designing these devices. Where the traditional work-designed device failed in placement and use of use, WebTV compensated—but issues of using a home device accessed by the entire household has raised issues such as privacy.

These interventions have provided specific benefit to patients; however they were not designed for use at home with specific attention to how people manage their health information within their homes. In addition, they are developed for a very specific purpose, and are therefore not scalable for deployment to large groups of individuals with a variety of health problems nor are they particularly instrumental for supporting community based health prevention and promotion activities. The strategy of delivering information directly to consumers ignores salient aspects of community resources and thereby under-utilizes related dimensions of the health care systems accessible to individuals.

The Community-Level Approach

Dr. Brennan’s Wisconsin Integrated Advanced Information Management Systems (WI-IAIMS) initiative at the University of Wisconsin-Madison proposes to implement a regional health information technology architecture to meet the information needs of trainees, trainers, practitioners, researchers, and consumers in the state of Wisconsin. One of the underpinnings of this work includes the development of a community-university partnership model described throughout this proposal. These partnerships will allow Wisconsin IAIMS to flesh out its vision of a regional, health information technology architecture, and use this architecture to support trainees learning activities, clinician and consumer support, and research management while building upon and enriching existing community-level commitments. The WI-IAIMS vision emphasizes the following key premises: maintain local control, promote connectivity, cultivate partnerships, leverage existing investments, and demonstrate, evaluate, and extend solutions.

The community-university partnership is a model of outreach that articulates a working relationship between the community and the university, which emphasizes community ownership over university-identified community partnership initiatives. In effect, the community identifies its own needs and goals; the role of the university is to facilitate those needs and goals with expertise. Communities that were chosen had established community-level health planning groups, a demonstrated framework for collaboration and decision-making that resulted in achieved outcomes, diverse stakeholder participation, demonstrated support and participation from local health departments and community health institutions, and technological readiness.

The WI-IAIMS approach builds upon other community-centered approaches. For instance, there is a movement toward patient-centered information systems proposed by Brennan, Kuang, and Volrathongchai (1999). This conceptual model places the patient is in the middle of an integrated system, networked to promote a flow of communication between and among the diverse members of the health care environment. The information flow between the clinics, hospital, and the home requires information access and sharing of patient record data, furtive records (personal records the patient keeps about themselves at home), and consumer health information.

Another movement, Community Health Information Networks (CHINS) of the early 1990s, was developed to promote data sharing, efficient data integration, public health reporting and alerting systems, and inter-organizational communication. The evolution of these networks has not occurred primarily due to organizational barriers such as loose definitions of community, internal conflicting missions, lack of clear ownership, and development from a “negative-value creation” (Dowling, 1997). However, the need for these networks has not diminished; rather there has never been a more exigent time to develop interorganizational data access, information sharing, and communication standards.

Many CHINs rested on distorted meanings of community that focus primarily on a health care enterprise or a group of institutions rather than a stakeholder constituency with common interests. Instead of creating a partnership with such an entity, CHINs often impose programs on communities that do not elicit direct involvement in the decision-making process (Gebbie, 1993). For this reason, parts of the community CHINs serve are alienated and will therefore not support its mission. Arriving at a better understanding of community is essential to make more rational decisions about investments in health and the development of healthy communities (Gebbie, 1997). Our partnerships ensure that IT solutions are congruent with local practices, goals, values and resources.

Dr. Brennan’s approach differs from these solutions in that it engages a community planning process to develop more appropriate solutions that link the individual to their health care community. Nancy Milio (1995) proposes that the basis for health exists within communities where essential resources and social cohesion exists to support it and that information technology provides tools that can leverage this support to promote healthy communities. She also suggests that self-care cannot take place in the absence of a health supporting environment (Milio, 1995). If this is true, then more attempts need to be made to partner with communities to develop these solutions, rather than develop institution-specific solutions outside of the context of the community.

Research Question

Are there patterns of behavior across homes and community entities with respect to health information access and dissemination that can be described and incorporated into health-related community IT design?

Methods and Expected Results

We propose to work with an established Wisconsin community health planning group to:

1)Study how people manage information in their homes

2)Study where and how health information is accessed/disseminated through the community

3)Study the readiness for consumer health IT solutions within and across the local health care communities.

4)Develop a prototype IT resource tailored to the needs of the individual within the context of their community.

Dr. Brennan has already established two community partnerships through her work on the Wisconsin Integrated Advanced Information Management Systems (WI-IAIMS) initiative (described earlier). The Dodge/Jefferson Healthier Community Partnership (DJHCP), located 50 miles east of Madison and the Wausau Health Foundation, 125 miles to the north of Madison are each organizations designed to ensure cooperative assessment of health needs, and integrated responses to those needs, in local communities. For the purpose of this proposal, DJHCP will serve as the demonstration site.

The 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 and it operates as a collaborative catalyst, identifying needs and linking the necessary resources to achieve its mission. The organization has a board structure of twenty-one members. 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. The DJHCP includes providers affiliated with all of the Hospitals in Dodge and Jefferson Counties and the Watertown Physician Hospital Organization, which included twenty HMOs, PPOs, POSs and standard insurances through local and national networks. Providers from the public health departments are also represented in DJHCP activities.

DJHCP will work with our research team to:

1)identify participants for each of the proposed study phases, and participate and provide feedback for parts of the study design, and provide support for data collection,

2)serve as the center for communication about the study within the community,

3)connect our research team to the health care entities and providers within the community,

4)to develop suitable content, design, and implementation strategies for a consumer health IT resource prototype, and

5)work with the research team to develop plans for possible study and resource expansion.