Launched in 2008, the Research and Training Institute (RTI) is the first institute dedicated to cancer related psychosocial, behavioral and survivorship research and training. The Institute seeks to examine the critical role of emotional and social support in improving the lives of people facing cancer, and to share what we learn with the broader cancer community. Our goal is to assure that patient and caregiver voices are heard by bringing scientific rigor and evidence-based research together with innovative approaches to collecting, evaluating and disseminating our findings. We bridge the gap between research and practice by using the information and insight from our community to improve Cancer Support Community programs and raise awareness of emotional and social issues with health care providers and policy makers.
The work of the Research & Training Institute is founded on two primary models for research:
- Patient Active Model, which suggests that patients have better outcomes when they are actively involved in their process of care. Every person facing cancer has a story–a unique, powerful narrative. At the Research and Training Institute, our goal is to assure that those stories are heard, both individually and collectively, and that they impact quality of care. That powerful, unified voice is at the core of the transformative model that puts the patient voice, and patient and caregiver experience at its center.
- Community-Initiated Research Collaboration Model, which involves the active and ongoing participation of stakeholders including patients and caregivers. We work closely with patients, caregivers, health care providers, academics, policy makers and our many partners to assure that our reach is both broad and deep and that our efforts have an ongoing, measurable impact on the quality of care. These partnerships are critical to achieving our research goals and to reaching the people who can benefit from our work.
We work collaboratively in many ways, including:
- Development of peer-reviewed articles, posters and presentations for professional audiences to report our findings.
- Active participation in developing and improving CSC programs for patients and caregivers.
- Active, ongoing communications with the advocacy community.
- Active communications with Advisory Councils of experts from a wide-range of specialties convened for specific projects.
The work of the Research and Training Institute is focused on four core objectives.
1. Aligning research with five key psychosocial domains identified by the Institute of Medicine in its 2007 report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”
- These are:
- Understanding illness, treatment and services
- Coping with emotions surrounding illness and treatment
- Managing illness and health
- Facilitating behavioral change to minimize disease impact
- Managing disruptions in work, school and family life
2. Initiating and participating in community-based research collaborations to improve the quality of life and diminish the psychosocial burden of cancer.
3. Applying research to the development and dissemination of training programs both internally and externally.
4. Using research as evidence to fuel advocacy for psychosocial support for people facing cancer.
We have developed innovative programs for those affected by cancer, both patients and their caregivers.
Among our key research programs and services are:
We accomplish this objective through the Cancer Experience Registry, and by reporting what we learn from this unique online community to patients, caregivers, health care providers and policy makers. Learn More
Patients who report good communication with their providers have better quality of life, lower distress and are more satisfied with their treatment. Understanding the quality of the communication with providers from the perspective of the patient is even more vital with the evolution of personalized medicine. Learn More
The Cancer Support Community developed and implemented a distress screening, referral and follow-up program, CancerSupportSource®, to identify the specific concerns experienced by a patient and provide a tailored and desired response. This research represents a significant step in establishing psychosocial care as a part of standard practice. Learn More
Caregivers are known to experience poorer quality of life and elevated distress compared to those not providing care, and cancer care can be particularly burdensome in terms of time and tasks. The Cancer Support Community recognizes that caregivers are impacted by and contribute to the cancer experience and has undertaken initiatives to hear these voices. Learn More