Stories Matter: A Patient/Caregiver Driven Approach to Research and Public Health
Sharon Brangman, MD
Telisa Stewart, MPH, DrPH
Patient Centered Outcomes Research (PCOR) is increasingly embraced as an effective approach to clinical research that uniquely incorporates the concerns, preferences and perspectives of patients, caregivers, clinicians, and other stakeholders at every stage of the research process – from identifying research priorities, to developing competitive proposals, to overseeing implementation as members of the research team. As the health field focuses increasingly on patient-centered care, the research that informs this care should also be patient driven.
The presentation will be led by stories we heard from about the challenges of caring for an older loved one and what they believe are the most important research issues to improve the care of older adults. A panel of one clinician and one researcher will discuss how these stories can be translated into better practice and more impactful research outcomes. The potential implications for public health strategies will be discussed.
By participating in this webinar you will hear caregivers and researchers:
Date: Wednesday, February 21st, 2018
Time: 12:00 - 1:00 PM (EDT)
Fee: FREE - NYSPHA members
$10 - non-members
1 CHES credit available
1 CPH credit available
Space is limited, registration is required -
Sharon A. Brangman, MD is Distinguished Service Professor, Chief of SUNY Upstate Medical University’s Division of Geriatrics, Director of the Geriatric Medicine Fellowship Program, and a past president of the American Geriatrics Society. Dr. Brangman is nationally recognized for her work to advance research, education and practice in geriatrics, with an emphasis on Alzheimer’s Disease and other dementias. She was a founding partner of the PCORI-funded Central New York Citizens Research and Action Network (CNY-CAN) and remains on the Steering Committee that has developed a network of over 200 patient, caregiver and other stakeholders who participate in identifying aging-related research priorities and on research teams.
Telisa M. Stewart, MPH, DrPH is an assistant professor in Public Health and Preventative Medicine and Urology at SUNY Upstate with a strong background in community based partnerships and community based participatory capacity, quality of decision making, qualitative research, program planning and evaluation, and studies with age 50+ populations. She has received research funding for qualitative research, shared decision making, patient reported information, community research, and aging related interventions and has published in qualitative research and shared decision making. Dr. Stewart has worked closely with CNY-CAN for over a year to translate patient and caregiver research priorities into competitive research applications for national funders.
Bruce Hathaway is the Director of Community Engagement Services at HealtheConnections, the Regional Health Information Organization in Central NY. In this role, he supports health promotion activities and the meaningful use of health information exchange to transform patient care, improve the health of populations and lower health care costs. Prior to joining HealtheConnections, Bruce served as a senior leader at the American Cancer Society where he promoted prevention, cancer research, patient care and advocacy. Previously, Bruce served with the YMCA of the USA, working on several national initiatives to address chronic disease at the local and state levels. He also served with the New York State Department of Health, where he worked with several communities across the state to address chronic and communicable disease prevention and control. Bruce has been a member of CNY-CAN’s Steering Committee since its inception.
Roseanne Suskin is a caregiver with extensive personal experience caring for people coping with dementia. As is so often the case, she set aside career responsibilities to be the primary source of support for her mother until her eventual death. In the process, she became involved with support groups and familiar with information about resources available in New York. Roseanne currently is the go-to person for a friend and neighbor in the early stages of Parkinson’s Disease. Roseanne has participated in multiple CNY-CAN meetings over the past two years, along with other caregivers, to help guide CNY-CAN in prioritizing research topics and designing studies that measure outcomes most important to patients with dementia and their caregivers.
Linda Wilcox is a caregiver for her husband, who suffered a cerebrovascular accident (CVA) in 2007, resulting in major speech and cognitive dysfunction. Although independent to a degree, she is his only caregiver. Linda was also a part-time caregiver to her mother-in-law who had Lewy body dementia. Throughout her caregiving journey, Linda has availed herself of resources for learning, continuing instruction, and self-improvement. While fortunate to be able to have time in making most decisions with her husband, she knows what it was like to have to make fast, ill-informed decisions, and how simply frightening this can be. Linda wants to be able to help others in their journeys so they might make better decisions with better and easier-to-use resources. Linda has been involved in CNY-CAN since 2015, beginning with its initial community conversations and participating later in meetings to provide patient/caregiver input into specific research studies. Like Roxanne, Linda agreed to serve as a member of the research team for a study being developed by SUNY Upstate Medical University on the comparative effectiveness of two different decision aids in improving patient and caregiver decisions on the use of cognitive enhancing medications for dementia.
"Having an Effective Meeting with Lawmakers"
View slides HERE
View the webinar recording HERE
(Please note: This recording will start on slide 11 due to technical difficulties)
Featuring: Blair Horner, Legislative Director, NY Public Interest Research Group
Topics covered include: