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