Virtual Health Library Project
Basic Information ModulesExpand all
Care Planning & Caregiver Information
- Advance Care Planning
- Advance Care Planning Resources
- Caregiver Stress
- Health Care Agents
- Making Shared Decisions
- Shared Decision-Making Tool
- Living Arrangements and Dementia
- Dementia and Driving: Information for Caregivers
Dementia Types & Information
- Stages of Dementia
- Dementia 101 - Symptoms and Diagnosis
- Is There a Difference Between Alzheimer’s Disease and
- Dementia 101 - Causes
- Creutzfeldt-Jakob Disease
- Huntington’s Disease
- Lewy Body Dementia
- Vascular Dementia (Powerpoint download)
August 8, 2019
SUNY Upstate Medical University’s Department of Geriatrics and Department of Public Health and Preventive Medicine have received a two-year, $250,000 award from the national Patient-Centered Outcomes Research Institute (PCORI) for a project entitled Virtual Health Library: Disseminating PCORI Findings to Patients with Dementia at the Point of Care. SUNY Upstate’s Health Sciences Library and Information and Technology Management staff are also partners on the project.
The Virtual Health Library will use SUNY Upstate’s electronic medical record system to provide information to patients and their caregivers that is relevant to the patient's condition at the time of a medical appointment. The project addresses the need for patients with Alzheimer's disease and other dementias and their caregivers to have access to trusted, up-to-date information in a timely manner that can help them make the most informed decisions possible about their care.
According to Sharon Brangman, MD, the project lead, "Too often patients do not have the information they need about treatment options and struggle to communicate their wishes to their health care provider." "The project will help bridge this information gap."
Information modules and videos in the Virtual Health Library will draw from scientific evidence from PCORI funded studies and other trusted sources nationally.
The project co-lead, Telisa Stewart DrPH, stated "The project addresses the fact that patients and caregivers are increasingly turning to the Internet for information, which is often inaccurate, not scientific and out of date. All content in the Virtual Health Library will be reliable, scientifically based and summarized in lay language that the general public can understand."
Uniquely, the project is engaging caregivers directly in designing the Virtual Health Library and its content. This approach builds on a multi-year collaboration between SUNY Upstate and FOCUS Greater Syracuse funded by PCORI to create a network of patients and caregivers who help design and carry out studies and projects intended to benefit older adults. The network, the Central New York Citizens Aging Research and Action Network (CNY-CAN), now includes over 200 patients, caregivers and other health care stakeholders. FOCUS is SUNY Upstate’s community partner on the Virtual Health Library project.
"With patients and caregivers at the table, we are confident that projects designed to help older adults will, in fact, reflect their needs, priorities and preferences," Dr. Brangman stated.; "SUNY Upstate and FOCUS are ahead of the curve nationally in taking this approach to our work."
About the funder: PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that provides patients, their caregivers, and clinicians with evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. For more information visit: http://www.pcori.org