Center of Excellence in Cancer Communication Research at the University of Wisconsin Center of Excellence Technology Enhancing Cancer Communication Center

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Overview: The vision of the University of Wisconsin Technology Enhancing Cancer Communication Center (TECC), a Center Of Excellence in Cancer Communication Research (CECCR), is to reduce the burden of cancer for those who suffer unnecessarily for lack of support or information. Through three randomized clinical trials and several developmental projects, the TECC intends to affect:

  1. Reach: The center’s studies span pre-diagnosis through death or optimal survival. In addition they will serve low literacy populations.
  2. Efficacy and effectiveness: The center will test whether the Center for Health Enhancement System Studies (CHESS) has the same results in the “effectiveness” content as found in the efficacy context. They will test the efficacy of mobile devices and enhance CHESS’s collaborative nature by using wikis and other co-creation technologies.
  3. Adoption, implementation, and maintenance: The center will examine acceptance and feasibility of using CHESS in a large HMO, test the extent that implementation follows intent, and gather data on how to fully integrate CHESS into the organization by building the business—and clinical—case for adoption.

The University of Wisconsin TECC participated in the first iteration of CECCR; for more information about their first set of projects, see the CECCR Archive.

Key partnerships and collaborations: The TECC and CHESS centers have a long track record of interdisciplinary research within the University, as well as externally. In addition to physicians, nurses, and social workers, the team includes adult learning specialists; communication scientists; systems engineers; decision and management scientists; clinical psychologists; family theorists; bio-statisticians; education psychologists; graphic artists; and computer, database and media experts. They are privileged to work with colleagues from the M.D. Anderson Cancer Center, UW Carbone Cancer Center, Kaiser Permanente Northwest, Hartford Hospital, University of North Carolina, Chapel Hill, and University of Georgia–Athens, to name a few.

Image of Principal Investigator Dr. GustafsonPrincipal investigator: Dr. David H. Gustafson is research professor of industrial and systems engineering at the University of Wisconsin-Madison, director of the National Cancer Institute designated Center of Excellence in Cancer Communications, and director of the Network for the Improvement of Addiction Treatment, funded by the Robert Wood Johnson Foundation and the federal government’s Center for Substance Abuse Treatment. He is also co-leading a new Robert Wood Johnson Foundation program to implement evidence-based practices in addiction treatment agencies and state governments. He also leads a NIDA randomized trial to evaluate five various strategies for quality improvement. His research focuses on the use of systems engineering methods and models in individual and organizational change.

His work in organizational change looks to develop and evaluate strategies for promoting and sustaining improvement in behavioral health care and involves more than 400 treatment agencies in 36 states. His individual change research focuses on developing and evaluating eHealth systems using, as the test vehicle, CHESS, a computer system delivered through mobile technology to help people facing serious health problems with a particular focus on cancer. His randomized trials of CHESS help to provide understanding on the acceptance, use, and impact of eHealth on quality of life, behavior change, and health services utilization.

Dave is a fellow of the Association for Health Services Research and of the American Medical Informatics Association, a fellow and past vice–chair of the board of the Institute for Healthcare Improvement. He also chaired the Federal Science Panel on Interactive Communications in Health, is chair of the eHealth Institute and is a member of the Institute of Medicine Committee on Redesigning Health Insurance.

Contact Information:
David H. Gustafson

Primary projects

  1. Effectiveness of the CHESS ehealth cancer support intervention in population-based care
    1. Lead researcher: Dr. Timothy Baker, Ph.D.
    2. Overview: This research will determine the use and effects of CHESS when offered to women with breast cancer who are provided CHESS through their health care provider (Kaiser Permanente Northwest (KPNW)). Researchers will examine both the proportion of breast cancer patients who enter a Website to seek breast cancer information and support and determine the effects of an Enhanced Interactive Cancer Communication System (ICCS) (CHESS) vs. Basic Web resources on multiple, important outcomes (e.g., patients’ sense of information competence, patient anxiety, health care utilization, and clinicians’ ratings of patient encounters). This research will address both the clinical and business cases for ICCS use in real world health care contexts.
    3. Implications for cancer prevention and control: This study takes ICCS beyond randomized control trials (RCTs) by assessing how well an experimentally tested ICCS will penetrate a population given universal access to it and assessing the business case for doing so. It will show how CHESS works in real world health care setting and how to replicate dissemination in similar environments.
    4. Selected works published as a result from CECCR II funding:
      1. Pingree, S., Hawkins, R. P., Baker, T., DuBenske, L., Roberts, L. J., & Gustafson, D. H. (2010). The value of theory for enhancing and understanding eHealth interventions. American Journal of Preventive Medicine, 38(1), 103-109.
      2. Kim, J., Han, J. Y., Shaw, B., McTavish, F., & Gustafson, D. (2010). The roles of social support and coping strategies in predicting breast cancer patients' emotional well-being: Testing mediation and moderation models. Journal of Health Psychology, 15(4), 543-552.
      3. Han, J. Y., Wise, M., Kim, E., Pingree, R., Hawkins, R., Pingree, S., McTavish, F., & Gustafson, D. (2010). Factors associated with use of interactive cancer communication system: An application of the Comprehensive Model of Information Seeking (CMIS). Journal of Computer-Mediated Communication, 15, 367-388.

Secondary projects

  1. ICCS in lung cancer: Evaluating survival benefits
    1. Lead researchers: Dr. James Cleary, M.D. and Dr. Lori DuBenske, Ph.D.
    2. Overview: This study is a follow up to the unanticipated survival benefits in our Clinician Integration Study from CECCR I. The present study will test quality of life (QOL) and survival effects of CHESS on advanced lung cancer patients. Participants are randomized to a control group receiving usual care or the experimental group receiving access to the CHESS Website . Patients may invite a caregiver to participate. Patients will be followed for 18 months or until patient death. The two primary hypotheses are: Compared to a usual care control, CHESS will significantly: (1) improve patient QOL; (2) influence length of survival.
    3. Implications for cancer prevention and control: This study hopes to validate an unexpected trend found in our CECCR I study concerning benefits in actual survival of lung cancer patients, not just QOL. We will analyze mechanisms of action in the context of patients, caregivers, and the clinical environment to determine how benefits are obtained using ehealth interventions.
    4. Selected works published as a result from CECCR II funding:
      1. DuBenske, L. L., Chih, M. Y, Gustafson, D. H., Dinauer, S., & Cleary, J. (2010). Caregivers' participation in the oncology clinic visit mediates the relationship between their information competence and their need fulfillment and clinic visit satisfaction. Patient Education and Counseling, 81(1), S94-S99.
      2. DuBenske, L. L., Gustafson, D. H., Shaw, B. R., & Cleary, J. F. (2010). Web-based cancer communication and decision making systems: Connecting patients, caregivers, and clinicians for improved health outcomes. Medical Decision Making, 30(6), 732-744.
      3. DuBenske, L. L., Beckjord, E. B., Hawkins, R. P., Gustafson, D. H. (2009). Psychometric evaluation of the Health Information Orientation Scale: A brief measure for assessing health information engagement and apprehension. Journal of Health Psychology, 14(6), 721-730.
  2. ICCS-directed physical activity enhancement for colon cancer survivors
    1. Lead researcher: Dr. David Gustafson, Ph.D.
    2. Overview: This research will develop and test a new ICCS, mobile CHESS (mCHESS) in a RCT for Stage 1–3 colon cancer survivors. mCHESS builds on and expands previous work with CHESS and FRESH START (a print-based behavior change program) by delivering personalized information, tools, and a support system to colon cancer patients via a smartphone. Participants are randomized to usual care or mCHESS. We hypothesize that autonomy, competence, and relatedness will mediate the effects of mCHESS on physical activity (primary outcome), leading to decreased levels of distress and increased overall QOL (secondary outcomes).
    3. Implications for cancer prevention and control: This smartphone intervention moves to a different portion of the cancer continuum—colon cancer survivors. It is intended to support survivors in lifestyle changes (increased exercise). If successful in behavior change, using this technology could vastly expand the reach and effectiveness of ehealth and influence a myriad of survivor outcomes.
  3. Moderating the negative impact of abnormal screening mammograms
    1. Lead researcher: Dr. Elizabeth Burnside, M.D.
    2. Overview: This research project aims to discover how CHESS-Mammo, an adapted version of CHESS specific to mammography, can aid health care decisionmaking and a patient’s diagnostic experience. We will enroll 130 women in a randomized controlled trial that compares women who receive access to CHESS-Mammo to those who receive a standardized informational pamphlet containing links to online information about screening mammography. We will evaluate CHESS-Mammo in the following domains: health information competence, psychological distress, patient satisfaction with physician, and use patterns.
    3. Implications for cancer prevention and control: The information gathered from this pilot will help inform, support, and ultimately improve the clinician-patient interaction as patients deal with suspicious mammograms. Similar ICCS applications could be developed for other diagnostic procedures resulting in better informed patients and reducing patient psychological distress during the diagnosis process.
    4. Selected works published as a result from CECCR II funding:
      1. Sprague, B.L., Trentham-Dietz, A., & Burnside, E.S. (2010). Socioeconomic disparities in the decline in invasive breast cancer incidence. Breast Cancer Research and Treatment, 122(3), 873-878.
      2. Ayer, T., Chhatwal, J., Alagoz, O.A., Kahn, C.E., & Burnside, E.S. (2010). Informatics in radiology: Comparison of logistic regression and artificial neural network models in breast cancer risk estimation. Radiographics, 30(1), 13-22.
      3. Ayer, T., Alagoz, O., Chhatwal, J., Shavlik, J.W., Kahn, C.E. Jr., & Burnside, E.S. (2010). Breast cancer risk estimation with artificial neural networks revisited: Discrimination and calibration. Cancer, 116(14), 3310-3321.
      4. Ayer, T., Ayvaci, M., Liu, Z.X., Alagoz, O.A., & Burnside, E.S. Computer-aided diagnostic models in breast cancer screening. Imaging in Medicine, 2(3), 313-323.
      5. Woods, R.W., Oliphant, L., Shinki, K., Page, C.D., Shavlik, J., & Burnside, E.S. (2010). Validation of results from knowledge discovery techniques: Mass density as a predictor of breast cancer. Journal of Digital Imaging, 23(5), 554-561.
      6. Xu, H., Min, Rao, M., Varghese, T., Sommer, A., Baker, S., Hall, T.J., Sisney, G.A., & Burnside, E.S. (in press). Axial shear strain imaging for differentiating benign and malignant breast masses. Physics in Biology and Medicine.
      7. Salkowski, L.R., Sisney, G.A., & Burnside, E.S. (in press). Utility of six-month follow-up imaging after a concordant benign breast biopsy. Radiology.
      8. Woods, R.W., Sisney, G.A., Salkowski, L.R., Shinki, K., & Burnside, E.S. (in press). The mammographic density of a mass is a significant predictor of breast cancer. Radiology.
      9. Chhatwal, J., Alagoz, O., & Burnside, E.S. (accepted). Optimal breast biopsy decision-making using mammographic features and demographic factors. Operations Research.
      10. Sprague, B.L., Trentham-Dietz, A., Gangnon, R.E., Buist, D.S.M., Burnside, E.S., Aiello Bowles, E.J., Stanczyk ,F.Z., Sisney, G.S. (accepted). Circulating sex hormones and mammographic breast density among postmenopausal women. Hormones and Cancer.