CancerCare Announces National Study: CancerCare Patient Access and Engagement Report


Study will feature six key areas of focus; advisory board of oncology experts to guide research and analysis.

NEW YORK, NY (July 8, 2015) — CancerCare, a national non-profit organization that provides free psychosocial support, education and financial assistance to anyone affected by cancer, announced today the launch of a bold, new research initiative. Through surveys among a nationally representative sample of thousands of people with cancer, CancerCare will examine patients’ experiences and perceptions regarding access to care, clinical trials, treatment decisions, communication with providers, insurance and financial concerns and end-of-life issues.

“The goal of the CancerCare Patient Access and Engagement Report is to more visibly and effectively represent the voice of people with cancer, advocate for their access to the best and most advanced care, and define and promote patient engagement to enhance quality of life and optimize outcomes,” explained Patricia Goldsmith, CEO of CancerCare and a cancer survivor herself. “We have developed a unique research approach that will use the Patient Activation Measure (PAM), a well validated and widely used tool, to help us contextualize and understand the ways cancer patients are involved in their own care and engage with providers. We are also deliberately seeking a nationally representative sample of respondents that will be broader than the members of online communities and registries who are typically quite educated, vocal and self-advocating.”

The report will be developed through six surveys that request feedback from people with cancer on topics that include:

• Understanding the diagnosis

• Participation in treatment decisions

• The role of caregivers

• Communication with the clinical care team

• Financial and insurance issues

• Quality of life and symptom management

• End-of-life care and hospice

An advisory board of renowned experts in oncology and patient engagement is actively engaged in survey assessment for relevance to real-world issues and will be reviewing and interpreting the survey data. The members of the advisory board are:

Walter Baile, MD Professor, Department of Behavioral Science, Division of OVP, Cancer Prevention and Population Sciences; Director, Program for Interpersonal Communication And Relationship Enhancement (I*CARE), University of Texas MD Anderson Cancer Center; Houston, TX

Ethan Basch, MD, MSc Director, Cancer Outcomes Research Program; Associate Professor, Medicine and Public Health, UNC Lineberger Comprehensive Cancer Center; Chapel Hill, NC

Jimmie Holland, MD Wayne E. Chapman Chair in Psychiatric Oncology Memorial Sloan Kettering Cancer Center; New York, NY

Marcia Kean, MBA Chairman, Strategic Initiatives Feinstein Kean Healthcare; Cambridge, MA

Sandra Kurtin, RN, MSN, AOCN, ANP-C Adjunct Associate Professor The University of Arizona Cancer Center; Tucson, AZ

Terry Langbaum, MHS Chief Administrative Officer Johns Hopkins Kimmel Cancer Center; Baltimore, MD

Michael Parisi, MBA President, CancerCare Board of Trustees Managing Partner, Ogilvy CommonHealth Worldwide; New York, NY

Lee Schwartzberg, MD, FACP Chief, Division of Hematology Oncology; The University of Tennessee Health Science Center, Medical Director, The West Clinic; Memphis, TN

• Thomas Workman, PhD Principal Communication Researcher and Evaluator American Institutes for Research; Washington, DC

Michael K. Wong, MD, PhD, FRCPC Berle and Lucy Adams Chair in Cancer Research; Professor of Clinical Medicine; Section Chief, Solid Tumor USC Norris Comprehensive Cancer Center; Los Angeles, CA

Patricia Goldsmith Chief Executive Officer, CancerCare; New York, NY

Ellen Sonet, MBA, JD Chief Strategy and Alliance Officer, CancerCare; New York, NY

The final report will be available publically from the CancerCare website,, and is due to be released at the end of the year. This project is being made possible by AbbVie, AstraZeneca, Bristol-Myers Squibb, Genentech, Helsinn Therapeutics, US, Gilead Sciences, Incyte Corporation, Lilly, and PhRMA.

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