Robert P. Hawkins

Effect of Computer Support on Younger Women with Breast Cancer

AbstractOBJECTIVE: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved. DESIGN: Randomized controlled trial conducted between 1995 and 1998. SETTING: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago, Ill), and a cancer resource center (Indianapolis, Ind). The latter three sites treat many underserved patients. PARTICIPANTS: Newly diagnosed breast cancer patients (N=246) under age 60. INTERVENTIONS: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support. MEASUREMENTS AND MAIN RESULTS: Pretest and two posttest surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group. CONCLUSIONS: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations.

Experiences of women with breast cancer: exchanging social support over the CHESS computer network.

Using an existential¨phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful inter action. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.

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.

Use and Impact of eHealth System by Low-income Women With Breast Cancer

ABSTRACT This article is the second of a two-part series reporting on a population-based study intended to use an eHealth system to examine the feasibility of reaching underserved women with breast cancer (Gustafson, McTavish et al., Reducing the digital divide for low-income women with breast cancer, 2004; Madison Center for Health Systems Research and Analysis, University of Wisconsin; Comprehensive Health Enhancement Support System [CHESS]) and determine how they use the system and what impact it had on them. Participants included women recently diagnosed with breast cancer whose income was at or below 250% of poverty level and were living in rural Wisconsin (n = 144; all Caucasian) or Detroit (n = 85; all African American). Because this was a population-based study all 229 participants received CHESS. A comparison group of patients (n = 51) with similar demographics was drawn from a separate recently completed randomized clinical trial. Use rates (e.g., frequency and length of use as well as type of use) as well as impact on several dimensions of quality of life and participation in health care are reported. Low-income subjects in this study logged on and spent more time on CHESS than more affluent women in a previous study. Urban African Americans used information and analysis services more and communication services less than rural Caucasians. When all low-income women from this study are combined and compared with a low-income control group from another study, the CHESS group was superior to that control group in 4 of 8 outcome variables at both statistically and practically significant levels (social support, negative emotions, participation in health care, and information competence). When African Americans and Caucasians are separated the control groups sample size becomes 30 and 21 thus reducing power. Statistical significance is retained, however, in all four outcomes for Caucasians and in two of four for African Americans. Practical significance is retained for all four outcomes. We conclude that an eHealth system like CHESS will be used extensively and have a positive impact on low-income women with breast cancer.

User-Centered Design and Interactive Health Technologies for Patients

Despite recommendations that patients be involved in the design and testing of health technologies, few reports describe how to involve patients in systematic and meaningful ways to ensure that applications are customized to meet their needs. User-centered design is an approach that involves end users throughout the development process so that technologies support tasks, are easy to operate, and are of value to users. In this article, we provide an overview of user-centered design and use the development of Pocket Personal Assistant for Tracking Health (Pocket PATH) to illustrate how these principles and techniques were applied to involve patients in the development of this interactive health technology. Involving patient-users in the design and testing ensured functionality and usability, therefore increasing the likelihood of promoting the intended health outcomes.

Health information, credibility, homophily, and influence via the Internet: Web sites versus discussion groups.

Despite concerns about online health information and efforts to improve its credibility, how users evaluate and utilize such information presented in Web sites and online discussion groups may involve different evaluative mechanisms. This study examined credibility and homophily as two underlying mechanisms for social influence with regard to online health information. An original experiment detected that homophily grounded credibility perceptions and drove the persuasive process in both Web sites and online discussion groups. The more homophilous an online health information stimulus was perceived as being, the more likely people were to adopt the advice offered in that particular piece of information.

Expressing Positive Emotions within Online Support Groups by Women with Breast Cancer

Based upon Fredricksons Broaden-and-Build Theory of Positive Emotions, this study examined the role of expressing positive emotions in online support groups for women with breast cancer. Underserved women with breast cancer in rural Wisconsin and Detroit, Michigan were recruited from 2001 to 2003, and they were given access to online support groups. Both pretest and four-month posttest surveys were conducted with a sample of 231 women. Messages from 96 active participants were analyzed using a computerized text analysis program. Psychological benefits that occurred following the expression of positive emotions were greater among those who expressed more negative emotions.

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

CHESS (Comprehensive Health Enhancement Support System): an interactive computer system for women with breast cancer piloted with an underserved population.

The Comprehensive Health Enhancement Support System (CHESS) Is an Interactive computer system containing information, social support, and problem-solving tools. It was developed with Intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socioeconomic classes with high school and college education. This article reports on the results of a pilot study Involving eight African-American women with breast cancer from impoverished neighborhoods in Chicago. CHESS was very well received; was extensively used; and produced feelings of acceptance, motivation, understanding, and relief.