My name is Katia Noyes and I direct the Division of Health Service Policy & Practice at the University at Buffalo's School of Public Health and Health Professions.  I have previous experience directing research and regional patient engagement for the Judy DiMarzo Cancer Survivorship Program at the University of Rochester. The term engagement, as in "engagement in research" or "engagement in care delivery," was first introduced by the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization formed in Washington, DC, in 2010. PCORI’s mandate is to "improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions.”

PCORI is particularly interested in funding clinical effectiveness research projects, or CER. When deciding how to address a health problem, patients and those who care for them often need to choose between two or more options. To make the best decision, they must have reliable information about the options’ potential benefits and harms of various options available to them. CER is a special type of clinical studies that compares multiple treatment options.

PCORI funded the development of this portal through a contract with the University of Rochester titled Virtual Rural Oncology Community (V-ROC). V-ROC  "aims to improve cancer care and patient experience for all cancer patients though communication, engagement and partnership across all regions (hence, the name "In My Corner"). By engagement, PCORI refers to the " meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results." We believe that such engagement can influence research to be more patient centered, useful, and trustworthy and ultimately lead to greater use and uptake of research results by the patient and broader healthcare community. We consider our community partners our advisors because of their expertise and hands-on knowledge about the state of health and healthcare in their communities and their experience with healthcare delivery from patient and caregiver perspectives. This expertise is essential for efficient delivery of high quality care, but these are skills that very talented physicians and well-trained researchers do not possess.

Therefore, this portal has a dual mission. First, it is intended to help cancer survivors address their unmet concerns and healthcare needs. In addition, it could give them an opportunity to become active participants in research and academic-community partnerships, as well as in their own care, to find support and to share their experiences with others in similar situations.

While working on our project plan and developing this portal, we partnered with many generous and enthusiastic individuals including:

  • Cancer patients, current and former
  • Their family members and caregivers
  • Providers and healthcare organizations:
    • Family physicians
    • Community and academic medical specialists
    • Healthcare purchasers and payers (Accountable Health Partners)
    • Hospitals and other health systems (UR Medicine, Noyes Memorial Hospital)
    • Policy makers and public health officials (Livingston County Department of Health)
    • Social services and community agencies (Genesee Valley Health Partners, Continuum of Care Coalition, Aging Services, Cancer Services Programs)
    • Researchers from UR and other academic institutions

Interestingly, many of our partners fit into more than one category (e.g., Janice is both patient and care provider; Lynda is a caregiver and a patient herself; Joyce is a healthcare administrator and a caregiver). This helps them recognize different points of view on the same issue and find reasonable compromises acceptable for all parties involved.

We thank you for your interest in our portal and look forward to your feedback, as this is an ongoing process of learning and improvement for all of us. We would very much appreciate your comments about your experience with our portal, how you learned about it, what you are looking for, what we got right and what we missed. And we hope you have a long and a safe journey – In My Corner and beyond!

Katia Noyes on behalf of V-ROC

Dr. Katia Noyes PhD, MPH
Project Director

Dr. Noyes is currently a Professor and Director of the Division of Health Service Policy and Practice in the Department of Epidemiology and Environmental Health within the School of Public Health and Health Professions at the University at Buffalo.  She is also the Clinical Professor of Surgery and Director of the Surgical Outcomes Research Center in the Department of Surgery at the University at Buffalo's Jacobs School of Medicine and Biomedical Sciences, as well as an Adjunct Professor of Oncology at the Roswell Park Cancer Institute.  Previously, she was the Scientific Director of Surgical Health Outcomes and Research Enterprise (SHORE) and Director of Regional Engagement and Outcomes for The Judy DiMarzo Cancer Survivorship Program at the University of Rochester. She is a health services researcher with expertise in quality of care assessment, comparative effectiveness, and health outcomes and economic evaluations in healthcare. In 15 years of her academic career, Dr. Noyes has specialized in multidisciplinary program development and implementation and has successfully built and trained interdisciplinary project teams. She recently has spent 6 months in UK, Canada and the leading US surgical outcomes and quality assessment centers learning state-of-art strategies and approaches for multidisciplinary oncology care. She holds a dual appointment in the Departments of Surgery and Public Health Sciences and has a unique set of skills, experiences and personal characteristics to lead this project and to make it a success.

Dr. Louis “Sandy” Constine, MD
Clinical Director, Wilmot Cancer Institute's Judy DiMarzo Cancer Survivorship Program

As a radiation oncologist, Vice Chair of UR Medicine's Department of Radiation Oncology, and Clinical Director of Wilmot Cancer Institute's Judy DiMarzo Cancer Survivorship Program, Dr. Constine’s professional life is guided by, in his own words: "For the survivor of cancer, the world is full and each day is a celebration; For the physician, each patient is an inspiration; For the person with cancer, each day is precious and must be faced with courage."

His areas of expertise and special interest include protocol design for patients with lymphomas, sarcomas and childhood cancers, as well as cancer survivorship including the long-term effects of chemotherapy and radiation therapy on normal body tissues and the generation of secondary malignancies.

Dr. Constine has spent his life striving to help patients with cancer, optimizing their quality of life and curing them when possible.  His patients, especially those that are young children, have taught Dr. Constine to appreciate his own life and not to take it for granted.  He believes that it is the responsibility of physicians to devise strategies to maximize the curability or palliation of cancer, while minimizing the adverse effects of treatment.

Dr. David Holub, MD
Associate Residency Director, University of Rochester Family Medicine Residency Program

Dave Holub hails originally from New Jersey. He received his medical degree from the University of Pennsylvania and completed his residency training at Brown University/Memorial Hospital of Rhode Island. His first practice was in a 30-bed rural hospital in northern New Hampshire, 45 miles from the nearest tertiary care hospital. He practiced full-spectrum family medicine including inpatient adult medicine, ICU care, and obstetrics, as well as nursing home care, office procedures, and a busy outpatient practice.

Following his strong interest in residency education, Dave relocated to Pennsylvania with his wife for her surgical residency training. He joined the residency faculty at the Penn State University/Good Samaritan Hospital Family Medicine Residency. He taught and had several leadership roles at this community-hospital based residency program with both urban and rural outpatient training sites. Dave then moved to Chicago, IL with his wife for her surgical oncology fellowship. He became Associate Residency Director and later Residency Director of the University of Chicago/NorthShore Family Medicine Residency Program. He also served as Interim Chairman, and then as Vice Chairman, of the Department of Family Medicine for the NorthShore University HealthSystem.

Dave and his wife settled in the Rochester area in 2010. He has been a residency educator for the past 16 years and is currently the Associate Residency Director for the University of Rochester Family Medicine Residency Program. He continues to practice full-spectrum family medicine including inpatient adult medicine and obstetrics. His professional interests include obstetrics, practice management, and cancer survivorship.

Nancy Termer, RN, BSN
Program Nurse Coordinator, Judy DiMarzo Cancer Survivorship Program

Growing up as a daughter of a small town Oncologist, Nancy was able to see early on some of the complexities in cancer care. In her High School years her oldest sister was diagnosed with a Brain Tumor and had a Bone Marrow Transplant. Nancy had the amazing responsibility of getting up before school and caring for her. It was during those days of bathing, suctioning, turning and various tasks that Nancy realized her love for nursing and specifically Oncology Nursing. She went to Roberts Wesleyan College in Rochester NY and got her Bachelors in Science and Nursing. After some years at The Genesee Hospital she started working for the University of Rochester Medical Center on the Blood and Marrow Transplant Unit for 10 years where she was awarded the Oncology Nursing Quality of Life Award. After getting married she moved to Buffalo and worked for Roswell Park Cancer Institute working for their medical director as the Clinical Pathway/Documentation Development Coordinator. She is happy to be back in Rochester and to have the opportunity to be at the James P. Wilmot Cancer Institute as the Program Nurse Coordinator for the Judy DiMarzo Cancer Survivorship Program. As the Program Nurse Coordinator, Nancy collaborates with all the various disease clinics in the areas of Cancer Survivorship. She provides leadership in the clinical management of survivors. She also assists in the development and implementation of educational resources for survivorship care.

Nancy considers it an honor to be in such a position and to be a part of such an amazing group of cancer survivors.

“You may not control all the events that happen to you, but you can decide not to be reduced by them”
Maya Anglou

Christina Crabtree-Ide, MPH
Program Manager

Christina is the incoming Program Manager of the Virtual Rural Oncology Community (V-ROC). Currently, Christina is a Doctoral Student in the Department of Epidemiology and Environmental Health at the University at Buffalo. She earned her Master’s of Public Health with a concentration in Epidemiology from the University at Buffalo and undergraduate degree in public policy with a healthcare concentration from William Smith College. She worked as a Research Scientist in the community setting in Kenya and Zambia conducting global health research and program evaluation before entering the doctoral program in 2012. Throughout her time as a graduate student, she has worked on several community-based interventions and program evaluations based in Asia and Africa, particularly in the area of child and maternal health. She is looking forward to working with cancer patients and survivors close to home and helping build networks of support.