Abstract PL04-03: What it takes to sustain consumer health informatics
Authors: Hawkins Robert 
Published: May 2012

PL04-03

People facing a cancer diagnosis are a very important target for consumer health informatics. Life-threatening diagnosis, painful and disruptive treatments, turmoil in personal relationships, paralyzing anxiety, and a diminished sense of self call up a host of new needs. And at least some research shows that their needs for information are less well-met than their care delivery or support needs

CHESS (the Comprehensive Health Enhancement Support System) is a web-based integrated communication system providing a wide range and depth of information, ways of connecting to others in the same situation, and tools for analysis and self-management. After describing the system, this presentation on the University of Wisconsin’s CECCR will summarize research on how CHESS has been able to buffer or prevent many of the psychosocial consequences of cancer diagnosis and treatment on patients and their families. One just-completed trial with lung cancer patients also found life prolonged for several months, as compared to patients whose needs were only served by the Internet in general.

Recent innovations within CHESS focus on integrating our web-based tools with existing human resources, such as human information experts, caregivers, and clinical staff. Next steps for us include achieving broad dissemination within a large HMO, replicating the life-prolonging effects and understanding how patient and caregiver behaviors created them, and using a cell-phone based system to prevent cancer recurrence through lifestyle changes and self-management.

A parallel research effort at Wisconsin has explored barriers to implementing such a system within health-care organizations (see the 2007 book, Investing in e-Health, by Gustafson, Brennan, and Hawkins for more detail). A fundamental issue is that the benefits of consumer health informatics reside primarily if not exclusively within consumers (i.e., individual patients and their families), but those best able to refer consumers to high-quality health informatics are clinicians and health care organizations. Thus, the primary decision makers on disseminating consumer health informatics get no direct benefit from it, and processes for such referral risk instead being a burden on individual clinicians and the health care organization generally.

Our research constructed and validated a model of how consumer health informatics such as CHESS are implemented within health care organizations, identifying seven factors (each with multiple indicators) that could contribute to or block success of an implementation over time: 1) organizational environment, 2) organizational motivation, 3) technology usefulness, 4) promotion, 5) implementation process, 6) department-technology fit, and 7) key personnel awareness and support. We then conducted six thorough case studies of organizations that had begun CHESS implementations for their patients/clients over more than a decade to try to understand the relative importance of the factors and how they interacted.

It was clear that no one or two factors alone could produce success or failure, even though there are some that are clearly strong positives or negatives. Rather, a successful implementation relied on at least some strength on a clear majority of the factors, which suggests that model factors may be compensatory to each other. Thus, an institution planning to implement consumer health informatics might find success by strengthening already strong factors as well as building up weak ones.

Citation Information: Cancer Prev Res 2008;1(7 Suppl):PL04-03.