Centers of Excellence in Cancer Communication Research at The Cancer Research Network Cancer Communication Research Center
Website : http://www.crn-ccrc.org
Overview: The Cancer Communication Research Center (CCRC) extends the focus of the Cancer Research Network (CRN) into communication, dissemination, and implementation science. CCRC studies concern team-based approaches to communication about cancer; the reduction of patient uncertainty and anxiety; how the structure of modern health care systems affects the patient experience and strategies for improving both physician-patient communication about cancer and the coordination of care.
Along with administrative core funding, four research projects were awarded as part of the center’s establishment. In addition, a Discovery Core was funded with the goal of identifying, documenting, and assessing clinical innovations in cancer communication. This Discovery Core was then paired with a Dissemination Core to accelerate the spread of effective practices, programs, and organizational policies into health care systems.
Primary research and goals:
- Use the CRN as a shared laboratory of clinical settings and use the organizational resources that support them to identify and test optimal communication and coordination processes that facilitate patient-centered cancer care. The CCRC will pursue this goal across the cancer care continuum—from prevention to early detection, diagnosis, treatment, survivorship, and end of life—and across cancer types—breast, cervical, colorectal, lung, prostate, and other cancers. We focus on clinical settings; the patient experience; and the ways that organizations prepare for, structure, and follow through on that experience.
- Employ proven frameworks and concepts from communication, dissemination, and implementation research to heighten communication effectiveness, external validity, and the diffusion potential of cancer communication interventions in clinical settings.
- Specific aims of the center:
- Aim 1: Leverage an existing administrative and scientific infrastructure (the CRN) to support synergies of discovery and the dissemination of practice-based communication strategies and organizational resources for improving patient experiences across the cancer care continuum.
- Aim 2: Support investigator-initiated research projects that advance communication theory and evaluate the efficacy of practice-based communication strategies informed by theory.
- Aim 3: Provide administrative and scientific support to new investigators, including clinicians, with regard to developing pilot projects, securing financial assistance to meritorious projects, and assisting in broader, investigator-initiated proposals to be submitted for extramural funding.
Key partnerships and collaborations: The CRN’s CCRC partners with a wide range of individuals and organizations, from clinicians and health care administrators to academic research teams and community based health service providers. Current collaborations include partners at Group Health Cooperative, Harvard Pilgrim HealthCare, and other members of the HMO Cancer Research Network, as well as Denver Health, Children Healthcare of Atlanta, the Center for Health Communications Research at the University of Michigan, and the University of Wisconsin’s Technology Enhancing Cancer Communication Center.
Principal investigator: Dr. James W. Dearing is a senior scientist at the Institute for Health Research and the co-director of the Center for Health Dissemination and Implementation Research at Kaiser Permanente Colorado. Prior to these positions, he was professor of communication and director of graduate studies in the School of Communication Studies at Ohio University, on the faculty of Michigan State University, and a visiting faculty member at the University of California, Berkeley and the University of Michigan. He studies the strategic use of diffusion of innovation concepts to accelerate the spread of evidence-based practices, programs, and policies. He studied under and worked closely with Everett M. Rogers for 20 years.
Dr. James W. Dearing
- Testing an optimal model of patient-centered cancer care
- Lead investigator: Edward Wagner
- Overview: The early phases of cancer care have received relatively little research attention. The period of time surrounding diagnosis and shortly thereafter involves information seeking, momentous decisionmaking, and navigation among multiple providers at a time of intense emotional stress. The purpose of this 5-year proposal is to develop and test the efficacy of a randomized, controlled clinical trial of an Oncology Nurse Care Management (ONCM) program. CCRC’s primary goal is to assess the impact on quality of life, quality of care, and other outcomes of an ONCM program at Group Health for patients newly diagnosed with breast, colorectal, or lung cancer.
- Implications for cancer prevention and control: This innovative strategy to enhance cancer care will support the overall CCRC goal to test optimal structures and processes within clinical systems that facilitate patient-centered communication and coordination.
- Effective communication for preventing and responding to oncology adverse events
- Lead investigators: Kathleen Mazor and Thomas Gallagher
- Overview: The goal of the study is to improve patient-centered communication around adverse events and errors in cancer care. The specific aims are:
- To describe patients’ experiences with communication surrounding adverse events and errors in cancer care
- To describe providers' experiences and practices with communication around adverse events and errors in cancer care
- To develop practical recommendations, provider training materials, and patient educational materials for improving communication around adverse events and errors in cancer care
- To disseminate the materials through three health plans
- To conduct a preliminary evaluation of the perceived usefulness and impact of materials.
- Implications for cancer prevention and control: By drawing on patients’ and providers’ actual experiences of communication breakdowns precipitating adverse events and errors, as well as communication after such events, we will be able to develop strategies for more effective clinician-patient communication. This will help providers avoid communication breakdowns that contribute to adverse events and medical errors, communicate more effectively, and mitigate emotional harm when errors do occur.
- Selected presentations and works published as a result from CECCR II funding:
- Mazor, K.M., Greene, S.M., Lemay, C., Calvi, J., Roblin, D., Firneno, C., Lo, C., Robinson, B., Prouty, C., & Gallagher, T. (2010). Patients’ perceptions of instrumental communication in cancer care. Presented at the European Association for Communication in Health Care’s International Conference on Communication in Healthcare, Verona, Italy.
- Greene, S.M., Mazor, K.M., Roblin, D.W., Calvi, J., Horner, K., Prouty, C.D., Firneno, C.L., Folz, J., Lemay, C.A., Lo, C.B., & Gallagher, T.H. (2010). Aftershocks: The lasting impact of problematic communication in cancer care. Presented at the European Association for Communication in Health Care’s International Conference on Communication in Healthcare, Verona, Italy.
- Gallagher, T.H., Greene, S.M., Roblin, D.W., Calvi, J., Horner, K., Prouty, C.D., Firneno, C., Lemay, C.A., Lo, C.B., & Mazor, K.M. (2010). Patients' views on delayed diagnosis in cancer. Poster presented at the ASCO Annual Meeting, Chicago, IL.
- Mazor, K.M., Greene, S.M., Roblin, D.W., Calvi, J., Horner, K., Prouty, C.D., Firneno, C.L., Folz, J., Lemay, C.A., Lo, C.B., & Gallagher, T.H. (2010). Patients' views on delayed diagnosis in cancer. Presented at the HMORN Annual Meeting, Austin TX.
- Development of an interactive, online dissemination and implementation planning tool
- Lead researcher: Dr. Borsika A. Rabin
- Overview: The focus of this project is to develop, implement, and pilot test the Make Research Matter (MRM) Planning Tool. This online interactive Dissemination and Implementation (D&I) Planning Tool is intended for use by developers of cancer control interventions, to be used throughout the cancer continuum from prevention to early detection, treatment, and survivorship. The purpose of the MRM Planning Tool is to increase the D&I potential of interventions and affiliated products of research and help bridge the gap between researchers who generate new knowledge with practitioners and policy makers who apply the knowledge. The MRM Planning Tool builds on existing D&I literature and the expertise of members of a Dissemination Research Interest Group representing five NCI-supported Centers of Excellence in Cancer Communication Research. A publicly available tailoring engine, the Michigan Tailoring System, is being used to help create the MRM Planning Tool.
- Implications for cancer prevention and control: The MRM Planning Tool expands existing resources, such as the Cancer Control Plan, Link, Act network with Evidence-based Tools (P.L.A.N.E.T.) and Research-tested Intervention Programs (RTIPs), and can be used during the design and development of an intervention to heighten the likelihood of D&I success (Designing for D&I).
- Stage one feasibility testing of the cancer survival query system
- Lead researcher: Dr. Borsika A. Rabin
- Overview: The Cancer Survival Query System (CSQS) is a second generation prototype cancer prognostic tool developed by the National Cancer Institute (NCI) to help physicians better understand valid estimates of cancer survival within the context of all causes of death and effectively communicate such information to their patients. In so doing, the CSQS is a means of making survival estimates from the Surveillance Epidemiology and End Results (SEER) project more timely, relevant, actionable, and context-accurate for cancer patients. The CCRC proposes moving this prototype closer to market readiness and enhancing future adoption and dissemination by accomplishing the following aims:
- Specific aim 1: To investigate how physicians and other members of the cancer care team who work in four health care delivery systems (i.e., Kaiser Permanente Colorado, University of Colorado Hospital, Denver Health Medical Center, and VA Eastern Colorado Health Care System) react to the CSQS prognostic tool in terms of general applicability; content and usability; and implementation potential.
- Specific aim 2: To assess the applicability of the CSQS across different areas of cancer care (i.e., specialty care vs. primary care), types of providers (i.e., physicians vs. nurses, nurse navigators, and nurse care coordinators), and types of health care delivery systems (i.e., integrated vs. non-integrated health care system).
- Specific aim 3: To assess how patients and their care givers (e.g., family members) react to the CSQS prognostic tool in terms of the content and usability of the CSQS and to determine optimal approaches for sharing prognostic information with patients and care givers.
- Implications for cancer prevention and control: CSQS, a prototype of an Internet-based decision support tool, could ultimately be considered for use by physicians and other members of the cancer care team, as well as patients and their caregivers, to encourage shared decisionmaking and support individualized and patient-centered cancer care.
- Formative research to prepare to assess patient-centered communication in cancer care
- Lead researchers: Kathleen Mazor and Bridget Gaglio
- Overview: The goal of this project is to provide a foundation for assessing patient-centered communication during cancer diagnosis and treatment. The specific aims are to:
- 1a.Identify a set of items that patients understand; are willing and able to answer; and that capture
those aspects of clinician-patient communication that patients and family members consider important.
- 1b.Identify the system characteristics that will encourage accurate reporting of communication experiences
by patients and family members, with minimal burden.
- 2.Identify a set of items and a model for a sustainable data collection and feedback system
that clinicians and leaders perceive to be valid, useful, and consistent with their goals.
- 1a.Identify a set of items that patients understand; are willing and able to answer; and that capture
- Implications for cancer prevention and control: At the completion of this study, CCRC will be poised to develop and pilot test a prototype data collection and feedback system. Ultimately, they hope to implement the system in multiple health plans, for extended periods, and to fully evaluate the impact of the feedback system on patients, providers, and organizational quality.
- A dissemination and implementation narrative video library for practitioners and researchers
- Lead researcher: Borsika A. Rabin
- Overview: The purpose of this project is to develop version 1.0 of a freely accessible online library containing video vignettes for researchers and practitioners who are interested in disseminating and implementing evidence-based practices, programs, and tools for cancer prevention and care. A video vignette is a brief visually encoded digital file that communicates “how-to” knowledge in a narrative form that models a solution to a particular problem. Each video vignette in this collection will highlight a discussion with a leading researcher or practitioner who will describe one problem in the process of dissemination and implementation (D&I) and show viewers how he/she solved this problem.
- Implications for cancer prevention and control: A growing number of researchers and practitioners believe that the key to effective D&I of interventions is to design for D&I. The D&I Narrative Video Library will provide support to researchers and practitioners who seek to design for D&I and hence has the potential to heighten the impact of effective cancer prevention and control interventions.
- Acknowledgements: Funding for this research was provided through the Center for Health Communications Research at the University of Michigan and the CRN CCRC.
- Increasing parent understanding of cancer treatment: Focusing on HoMeS
- Lead researcher: Dr. Kathleen Walsh, M.D., MS.c
- Overview: In a pilot study funded by the CRN CCRC, it was found that children with cancer often suffer from medical errors caused by miscommunication about home medication use. The goal of this project is to improve implementation of pediatric oncology treatment protocols and reduce medication errors in the home. We will:
- Develop a Web-based parent toolkit and a clinician module containing materials to support HoMeS (a Web-based Home Medication Support calendar designed to improve parent understanding of, communication about, and implementation of cancer treatment protocols in the home)
- Evaluate the effectiveness of these materials
- Disseminate these materials.
- Implications for cancer prevention and control: At the completion of the proposed study, CRN CCRC will disseminate a Web-based toolkit as a single source for parents for essential information about their child’s cancer treatment, designed to stimulate parents and clinicians to work together to prevent and resolve problems in home cancer care.