CancerCare, a national nonprofit organization that provides free psychosocial support, education, and financial assistance to anyone affected by cancer, has announced 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—a cancer survivor herself. “We have developed a unique research approach that will use the Patient Activation Measure, 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. Survey data will be assessed and interpreted by an advisory board of experts (see sidebar).
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 on topics that include understanding of 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, and end-of-life care and hospice.
The final report will be available publically from the CancerCare website, www.cancercare.org, and is due for release 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. ■