2022 Alison Norris Symposium: Patient Engagement and Advocacy

The Alison Norris Symposia of the New York Academy of Medicine have been dedicated to enhancing the ability of kidney practitioners to engage with the personal, social, and economic realities that patients face. The 2022 symposium will be the sixth in the series and will examine patent engagement and advocacy. The first half of the program will examine patient engagement and advocacy in research. The second half of the program will address patient engagement and advocacy in clinical care.

Members of the kidney community should come away with an understanding that patient engagement in research and in the clinical setting has advanced from aspiration to reality. Successes in this enterprise will be described; challenges will be identified.

Read the full program

IN LOVING MEMORY OF DR. ALISON NORRIS

Dr. Alison Norris was a beloved nephrologist who focused much of her practice on patient care and advocacy with equal measures of brilliance and passion. She sought to understand the emotional, ethical, and end-of-life challenges facing patients with renal failure, to inform the medical profession and general public about these issues, and to make patients’ voices heard. Dr. Norris’s family has made a generous gift to The New York Academy of Medicine to enable the establishment of a biennial symposium. This gift will provide the nephrology community and interested health professionals engaged in the care of patients with Chronic Kidney Disease (CKD) with a forum to consider these issues and reflect on how they affect the practice of medicine.

Speakers

Kerri Cavanaugh, MD, MHS is an Associate Professor of Medicine within the Division of Nephrology and Hypertension at Vanderbilt University Medical Center. She is also a nephrologist with the Tennessee Valley Health System Veterans Affairs Medical Center. Dr. Cavanaugh’s research interests center around identifying factors influencing how patients learn about complex chronic disease and the translation of health information into effective self-care behaviors. This includes studying patient-related, provider-related and also patient-provider communication variables. She has demonstrated the risk related to limited health literacy and deficits in disease-specific knowledge among patients with moderate to advanced kidney disease, as well as developing and testing multi-level interventions to improve care. Dr. Cavanaugh developed and made freely available novel valid measures to assess kidney knowledge, self-efficacy of self-care in kidney disease and self-management behaviors. These activities have been funded by the NIH, the American Society of Nephrology, and the National Kidney Foundation.

Allison Jaure, PhD is a Principal Research Fellow at the University of Sydney. She holds an Australian National Health and Medical Research Council (NHMRC) Investigator Award. Allison has an interest in patient involvement in research, including in the context of research priority setting, the development of core outcomes for research, and in the co-production of clinical trials. She co-founded the global Standardised Outcomes in Nephrology (SONG) Initiative, which aims to establish consensus-based core outcomes across the spectrum of chronic kidney disease (www.songinitiative.org).

Kirsten Johansen, MD is the Director of Nephrology at Hennepin Healthcare and co-Director of the Chronic Disease Research Group. She is a general nephrologist who specializes in the care of patients with chronic kidney disease and patients receiving home-based or in-center dialysis treatment. “I particularly enjoy helping patients navigate through the management of their kidney disease at all stages. My goal is to develop a partnership that allows for shared decision making, which is only possible in an environment of mutual understanding.” says Dr. Johansen.

Fredrick Kaskel, MD, PhD is Professor of Pediatrics, Albert Einstein College of Medicine and Vice Chair, Affiliate and Network Relations, Children's Hospital at Montefiore. As Director of the Division of Pediatric Nephrology, Dr. Kaskel is involved in basic and clinical investigations into the mechanisms of the major kidney disorders in pediatrics. He is particularly interested in the physiology and pathophysiology of normal and abnormal development and function of the kidneys throughout the critical periods of growth and maturation extending into adolescence and young adulthood. He is actively involved in a clinical trial funded by the National Institutes of Health (NIH) to find the most efficacious therapy for focal segmental glomerulosclerosis, one of the major causes of progressive glomerular disease, while investigating the molecular etiologies for its expression. Another NIH-supported study involves chronic kidney disease in children and how it affects their growth and neurocognitive development, and the risk factors for cardiovascular disease and renal progression.

Elaine Ku, MD is currently Associate Professor in the Departments of Medicine, Pediatrics, and Epidemiology and Biostatistics at the University of California, San Francisco. She conducts research focused on health disparities in access to kidney transplantation and cardiovascular risk factors in kidney disease, and also directs the transition clinic from pediatric to adult healthcare systems at UCSF.

Dr. Ku’s research program focuses on understanding differences in the epidemiology, clinical management, and outcomes of children versus adults with kidney disease and the conduct of clinical trials to test interventions (such as blood pressure control) that will improve survival of patients with kidney disease. She is especially interested in transitions of care, such as that between adolescence and young adulthood, as well as that between advanced chronic kidney disease and end-stage renal disease (including dialysis and transplant).

Dinushika Mohottige, MD, MPH is a Nephrologist and Assistant Professor of Medicine in the Division of Nephrology at the Icahn School of Medicine at Mount Sinai and the Institute for Health Equity Research at Mount Sinai. She received a B.A. in Public Policy and a Health Policy Certificate from Duke University in 2006, where she was a Robertson Scholar. She then earned an MPH in Health Behavior/Health Education from the UNC Gillings School of Global Public Health and a medical degree from the University of North Carolina at Chapel Hill School of Medicine, followed by an Internal Medicine residency and Nephrology fellowship at Duke University. She engages in patient and community-centered, inequity-focused research around the impact of socio-structural factors on kidney health and kidney transplantation. She proudly serves on the NKF Health Equity Taskforce, the NKF Transplant Advisory Committee, and the ESRD Health Equity NCC Advisory board.

Marva Moxey-Mims, MD is Chief of the Division of Nephrology at Children’s National Health System, Washington, D.C. She was previously at the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health in Bethesda, Maryland. There, she served as Deputy Director for clinical science in the Division of Kidney, Urologic, and Hematologic Diseases, overseeing a portfolio of research including trials for kidney disease and genitourinary dysfunction in adults and children, and as Director of the Pediatric Nephrology program. In addition, she managed the division’s small business grants for kidney research. Two of the studies she initiated are the ongoing Chronic Kidney Disease in Children (CKiD) study, the largest study of pediatric chronic kidney disease ever conducted in North America, and the Randomized Intervention for Children with Vesicoureteral Reflux (RIVUR) trial, a large trial undertaken to understand the effectiveness of prophylactic antimicrobial treatment in children with vesicoureteral reflux.

Dr. Moxey-Mims’ focus at Children’s is clinical research to improve the care of children with kidney disease and to be used as a tool to educate trainees. She received her undergraduate degree from McGill University in Montreal, Canada, and her medical degree from Howard University in Washington, D.C. She completed her pediatric residency and clinical pediatric nephrology training at Children’s National, followed by a research fellowship at the National Institute of Allergy and Infectious Diseases at the NIH. She is board-certified in pediatrics and pediatric nephrology, and is a member of several national committees.

Glenda V. Roberts is the Director, External Relations and Patient Engagement at the University of Washington. Prior to joining the UW Center for Dialysis Innovation and Kidney Research Institute as the Director of External Relations & Patient Engagement, Glenda V. Roberts was an Information Technology executive with over 35 years of experience. Before going on dialysis, Glenda managed the progression of her disease throughout her career via diet and exercise for over 40 years. Refusing to accept limitations, she enjoyed a fulfilling career, evolving from a software developer to a senior business executive managing multi-million-dollar business units for top-caliber corporations, including General Electric, Microsoft and Johnson & Johnson. Since her transplant in 2010, she’s completed eight half marathons.

Prabir Roy-Chaudhury MD, PhD, FRCP (Edin) is a Professor of Medicine and Co-Director of the University of North Carolina (UNC) Kidney Center. After graduating from the Armed Forces Medical College, Pune, India, he trained in Internal Medicine and Nephrology at the University of Aberdeen, Scotland and at the Beth Israel Hospital, Harvard Medical School, Boston, USA. In addition to being an active transplant nephrologist, Dr. Roy-Chaudhury?s main research interest is in uremic vascular biology (including both dialysis vascular access dysfunction and cardiovascular complications in kidney disease patients). He currently leads a translational research program in this area funded through the National Institutes of Health, the Veterans Administration research program, and through industry grants.

Dr. Roy-Chaudhury has been the recipient of extensive NIH research grant funding, has received national and international awards, has published over 175 papers, and is a sought after invited speaker, both nationally and internationally. Dr. Roy-Chaudhury has been actively involved in the public policy and administrative aspects of dialysis vascular access care and hemodialysis as a previous or current board member/councilor/committee chair for the American Society of Diagnostic and Interventional Nephrology, the Renal Network, the Interventional Nephrology Advisory Group of the American Society of Nephrology (ASN), the ASN Post Graduation Education Committee and the International Society of Nephrology-India and South Asia Committees, as well as being the previous President of the American Nephrologists of Indian Origin (ANIO).

David M. (Dave) White is a lead proofreader at an international law firm.
"A doctor informed me that my kidneys were no longer working after an emergency room visit in 2009, and I was not ready to accept my new reality. For a while, I thought that my kidneys would magically start working again. My first six months on dialysis were very challenging, and I was fortunate to have a loving family and support system that did not give up on me when I almost gave up on myself."

"A care plan meeting changed my attitude and my outlook. My dialysis care team took the time to work with my wife Hilva and me to develop a plan of care that empowered me to pursue my full potential as a person living with a serious illness. Most importantly, I was told that I had to own my plan of care for it to work. Thankfully, I listened, took charge of my health, and eventually thrived on dialysis before receiving a kidney transplant from a deceased donor in 2015."

"Today, I am honored to serve on the board of directors of the Patient Advocate Foundation and the National Patient Advocate Foundation. I have served as chair of PCORI's Advisory Panel on Patient Engagement as well as the Kidney Health Initiative Patient and Family Partnership Council and was an inaugural member of the FDA Patient Engagement Collaborative."

"I strongly believe that the best way to reduce disparities in health outcomes is to empower communities and the people who live in them to take responsibility for improving their own health and well-being."