Eric W. Boberg

CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved

This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review places particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.

Assessing the unmet information, support and care delivery needs of men with prostate cancer

This study identified the key Unmet Needs of men with localized prostate cancer. A series of Nominal Groups were used to identify needs, from which a 135-item survey was developed to assess both the Importance and Unmet Need of each item. An Importance-Weighted Unmet Need score was calculated for each item, incorporating both the Importance and the degree to which the need was unmet. Surveys (n=500) were distributed in four geographically distinct areas, with a response rate of 46%. Respondents were 90% Caucasian, 80% married, with a mean age of 66 years, and mean education of 14 years. Care delivery needs were most important and least unmet, while Support needs were least important and most unmet. However, when degree to which needs were unmet was weighted by Importance, information needs had the highest Importance-Weighted Unmet Need scores. The greatest Unmet Needs for information were in knowledge of recurrence issues and in side effects of the illness and its treatment.

Empowering patients using computer based health support systems.

With the increased pressure to contain healthcare costs, it is critical to find more eVective ways of providing information, emotional support, decision making, and behaviour change assistance for patients. In the United States, a doctor spends approximately 18 minutes in face to face contact with the patient during each clinic appointment. 1 During morning hospital rounds, physicians spend on average just over four minutes in the patient’s room. 2 It has been proposed that ideal physician communication with patients with breast cancer should be tailored to patients’ needs or coping styles to reduce their distress. 3 However, in an environment of continued pressure to reduce healthcare costs, it is virtually impossible for doctors to give patients adequate information or even direct them to appropriate support resources. If costs are to be reduced while at the same time improving patient support we must find new ways to help patients to cope with their disease, make necessary decisions, and gain emotional support. Computer systems can help to fill this void. A key problem encountered by people facing a health crisis is that they are often given information when they are least able to take it in, such as at the time of diagnosis. SiminoV and others have concluded that nearly all studies point to serious gaps in patient recall and understanding of the information they are given. 34

Will the disadvantaged ride the information highway? Hopeful answers from a computer‐based health crisis system

While much research on new communication technologies has warned that disadvantaged groups will make less use of empowering information, doing anything about it will require distinguishing between explanations. Lack of access is largely an economic and policy issue, while explanations based on lack of skills, motivation or information‐oriented media habits locate much of the problem with individuals. The research reported here provided access to a technology‐based system, and indicates that the other barriers can be overcome. An interactive computer system (CHESS — Comprehensive Health Enhancement Support System) was placed in homes of HIV‐infected people, and use was monitored by the computer. While the system was used heavily over several months, differences between demographic subgroups were small, and in most cases the system was used more by groups ordinarily expected to use these technologies less. Thus, while economic barriers to access certainly exist, a case for subsidizing access to overcome tho...

The quality of interactive computer use among HIV-infected individuals.

This study examined how HIV-infected individuals used an interactive health software package called CHESS (Comprehensive Health Enhancement Support System). CHESS packages information and support in a variety of ways; the research examined how a subset of users whose posttest scores in a larger randomized trial showed significant improvement in quality of life compared on use patterns of CHESS with those who did not improve. The evidence presented here points to the nature of CHESS use more than it does to the amount of CHESS use. Those whose quality of life improved were among the most involved in their use of CHESS information tools. That is, even though Discussion Group accounted for the majority of all CHESS uses and time spent with the system, total use and Discussion Group use appeared less important than use of the information tools, especially if that use was at least somewhat sustained and involved.

Increasing Understanding of Patient Needs During and After Hospitalization

BACKGROUND The value of patient satisfaction surveys in health care improvement remains controversial. This study examined the value of alternative ways of identifying patient needs and estimating importance of those needs in improving the impact of satisfaction surveys. METHODS Ninety-one acute myocardial infarction (AMI) patients from three southeast U.S. community hospitals were surveyed in 1992. Critical incident and person-focused interviews were used to identify patient needs. Besides overall/global satisfaction with care, patients rated satisfaction with and importance of 12 care delivery and 18 information and support needs. Unmet need scores (importance minus satisfaction) were estimated. Derived importance scores were assessed by correlating global satisfaction with individual need satisfaction scores. A two-step process for identifying priority areas for improvement was proposed. RESULTS Patients identified and assigned greater scores to unmet needs for information and support needs (not included in typical satisfaction surveys) compared to typically assessed care delivery needs (p < 0.0001). Direct importance ratings differed substantially from those derived through correlation analyses (r = 0.28, p > 0.3 for care delivery needs and r = -0.17, p > 0.4 for information and support needs). Needs that received high importance and low satisfaction scores were all information and support needs. DISCUSSION Needs that patients consider very important are usually ignored in typical patient surveys. Derived approaches typically used to assess importance of need from satisfaction data may provide misleading results. If satisfaction surveys are to result in real performance improvement, a fresh examination of the content and importance assessment strategies, as proposed, is needed.

Helping adolescents quit smoking:a needs assessment of current and former teen smokers.

This study compared the survey responses of 280 current and former adolescent smokers for what they perceived would be helpful (or what had helped) in quitting smoking. The survey was developed from focus groups and was structured using Prochaska and DiClementes Stages of Change health behavior framework. Results showd that former smokers and current smokers in the preparation stage of change shared beliefs about the importance of interpersonal support, those who were contemplating a quit decision worried about obstacles and internal issues, and current smokers not thinking about quitting focused on external rewards. The findings that significant differences exist based on the adolescent smokers Stage of Change imply that this framework can be appropriately applied to this context.

Differences in adolescent smoker and nonsmoker perceptions of strategies that would help an adolescent quit smoking

This study assessed adolescent smoker and nonsmoker perceptions of strategies that would help an adolescent smoker in his or her attempt to stop smoking. Surveys were distributed primarily in the schools at 4 geographic and ethnically diverse study sites. Respondents were 965 adolescents (49% female; 46% minority). Current smokers (n = 232) were asked to rate the extent to which they agreed or disagreed that supportive behaviors of friends and family, quitting strategies, or learning about quitting strategies would be helpful if they decided to quit. Nonsmokers (n = 733) were asked to indicate the degree to which they agreed or disagreed that these behaviors and strategies would be helpful if a friend decided to quit. Responses to each of the 33 attitude items were rated on a 5-point scale ranging from strongly disagree to strongly agree. Marked differences were observed between smokers and nonsmokers in the level of agreement on each item. In general, smokers reported far less enthusiasm for cessation strategies than nonsmokers. After adjusting for gender, age, and other covariates, smoking status was the strongest independent predictor of the number of items endorsed as agree or strongly agree. The results have implications for the design of peer-based and other interventions for adolescent smokers.