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.
A long standing commitment to Research and Training
“We are building our programs on a very long tradition of leading the way in putting the patient voice and experience at the center of everything we do. We know that in today’s world, we need evidence-based programs to achieve our full impact.”
Joanne Buzaglo, PhD, Vice President, Research and Training
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
The Cancer Experience Registry
The Cancer Experience Registry is a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others. Launched in 2013, the Registry now has over 8,000 participants, both patients and caregivers. The Registry is open to any individual impacted by cancer, at any stage of the journey. It is free and confidential. In addition to the general Registry, there are currently 11 special programs for people with specific cancer types, and for caregivers.
Participants can join the Cancer Experience Registry by filling out a simple registration form, and then a more detailed questionnaire. This questionnaire is a tool to think about and identify the emotional and social issues that impact an individual’s cancer experience. The Research and Training Institute uses the information from these surveys to improve the care for people with cancer and their caregivers, and to develop better programs and services for our community.
Individuals who enroll in the Cancer Experience Registry can create a personal page to customize their experience and assure they have access to important information, updates and opportunities to connect with other people who share their concerns.
Current special programs include:
- Multiple Myeloma Caregivers
- Metastatic breast cancer
- Gastric (stomach) cancer
- Chronic lymphocytic leukemia
- Chronic myelocytic leukemia
- Lung cancer
- Multiple myeloma
- Prostate cancer
Why Your Voice Matters
The terms patient voice and patient-centered care have become buzz words in today’s rapidly changing health care world. But what does it really mean when you are sitting in your doctor’s office hearing that you have cancer, or being asked to make a crucial treatment decision? At that moment, you may just want the expert, your doctor, to tell you what is best.
But it is critical to remember that cancer treatment is a process, and has an impact on virtually every aspect of your life. Your values, the things that matter to you are very much a part of that process. The more actively you participate in making decisions about your care—the emotional and social aspects as well as the purely clinical—the more likely it is that your experience, and potentially your outcomes, will be better.
Your voice matters in assuring that you are heard in the decision-making process. In a broader and deeper sense, it also matters in helping to address the full spectrum of needs and issues that people impacted by cancer face. One voice becomes many, and those voices come together to shape the way cancer care is delivered, and to develop the programs and services that support people throughout their journeys.
Some people think of themselves as advocates, and take a very active role in making their voices heard. Others choose a quiet path. Regardless, your voice matters. One way to make sure it is heard is to join the Cancer Experience Registry.