Patient Summit: Celebrating Patient-Initiated Innovations in Improving Diagnosis

Dr. Kathryn (Kathy) McDonald is the Bloomberg Distinguished Professor of Health Systems, Quality and Safety at Johns Hopkins University. She holds primary appointments in the School of Nursing and the School of Medicine (General Internal Medicine), as well as academic affiliations in business, public health and engineering. She is Co-Director of the Armstrong Institute Center for Diagnostic Excellence at the Armstrong Institute for Patient Safety and Quality, and recently served as Interim Director of the Center on Innovative Care for Aging. Previously, at Stanford University, she was the founding executive director of the Center for Primary Care and Outcomes Research and executive director of the Center for Health Policy. Her interdisciplinary scholarship aims to improve health care delivery, and relies on close partnerships with patients, frontline clinical teams, and delivery system leaders. Influential research products include over 100 evidence-based national quality, prevention and safety measures for improving care and reducing inequities. She has also authored seminal publications on coordination of care, patient safety practices and quality improvement strategies. She has served as president of the Society for Medical Decision Making, advisory chair for the Relational Coordination Collaborative, and founding chair of the Patient Engagement Committee of the Society to Improve Diagnosis in Medicine. She has also served as a member of National Academy of Medicine Committees — one on Child Health and Healthcare Measures, and another on Improving Diagnosis and Reducing Diagnostic Errors – that grappled with challenges of measuring and improving quality, equity and health.

For Meredith O’Neal, the mission of John Ritter Foundation for Aortic Health (JRF) is incredibly personal. When she was 33 years old and 37 ½ weeks pregnant, she became the fifth thoracic aortic dissection in four generations of her family. Her professional history and passion to find answers for her family made her a perfect fit for JRF when she joined in 2021 as Chief Executive Officer.

After graduating with a BFA in Music from Texas Tech University, O’Neal worked for Dallas Summer Musicals (now Broadway Dallas) in the community outreach and development department. This led her to more than a decade of non-profit management in North Texas through large-scale fundraising events: Cattle Baron’s Ball for American Cancer Society and Cotes du Coeur for American Heart Association.

O’Neal thrives on raising funds, advocating for systematic change, connecting people, and raising awareness to save the lives of more families like hers. She lives in Texas with her husband and 5-year-old son. Family is what drives her, and she is determined to ensure that she is the last in her family to be taken surprise by thoracic aortic dissection.

Jaime Seltzer is the Director of Scientific and Medical Outreach at the nonprofit advocacy organization #MEAction and a researcher with Stanford Medicine.  At #MEAction, she fosters communication between healthcare and government institutions, research scientists, clinicians, and people with infection-associated chronic illnesses. She has represented #MEAction at CDC, NIH, on Capitol Hill, with national healthcare institutions in Australia, Canada, and the UK, and in university-led research groups for ME/CFS and Long COVID. She has worked with Stanford, Columbia, Mayo Clinic Rochester, and Project ECHO on post-infectious chronic complex diseases, including ME/CFS and Long COVID.  She is also a person living with ME/CFS.

Helene has grown accustomed to being the only person in the room without an MD after her name. Since 1999, she has served on committees, panels, and boards of directors for medical research projects, healthcare organizations, public schools, and grant-givers. She first became an advocate for families dealing with crisis when her son’s complex 15-year diagnostic journey began. She has been a published writer for over 25 years, known for turning complex issues into accessible information so readers can apply the information to their own lives. She has done so for topics ranging from healthcare to policy to parenting issues and many more. Helene is a proud member of SIDM’s Patient Engagement Advisory Committee and the author of SIDM’s Dx IQ column, which helps engage and empower patients in their search for an accurate diagnosis. Helene’s personal mission is to ensure no adult, parent, senior, child, or family member ever has to accept a wrong diagnosis again as she did, unprotected and unarmed. She seeks to help educate, empower, and encourage patients to ask questions, pursue answers, access resources, and band together with others to support one another.

A pioneer endometriosis specialist and internationally renowned advanced laparoscopic surgeon, Dr. Seckin is a Clinical Associate Professor at Zucker School of Medicine and educator on endometriosis around the world. With over thirty years of experience exclusively performing excision surgery on complex endometriosis cases, Dr. Seckin is in private practice in NYC and works out of Lenox Hill Hospital. In 2006, he founded the Endometriosis Foundation of America, which has funded over $1 million in research. Dr. Seckin has published 12 peer reviewed articles, including co-authorship on the article, “Cancer-Associated Mutations in Endometriosis without Cancer” (New England Journal of Medicine), one of the most referenced papers on this subject. In addition to his research, Dr. Seckin has 3 patented surgical techniques and 2 surgical trademarks. Dr. Seckin’s book, The Doctor Will See You Now: Recognizing and Treating Endometriosis, is rated the No. 1 most-read book on endometriosis (Goodreads.com). He also wrote Endometriosis: A Guide for Girls.