Request to Join
has invited you to join this group
Amy Berman is a Senior Program Officer with The John A. Hartford Foundation, where she leads the foundation’s development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. She is responsible for the foundation’s work on age-friendly health systems, as well as work to advance palliative care.
Berman spent two decades working in home healthcare administration, with responsibility for quality improvement, health information technology, accreditation, and regulatory compliance. She openly shares her experience as a person living with stage IV cancer and has written numerous articles about her healthcare choices; palliative care; person-centered care and the implications for patients, practice, and policy.
Berman has received numerous honors for her advocacy on behalf of older adults and those facing serious illness including the President’s Award from the American Academy of Hospice and Palliative Medicine, the Civitas Award from the American Academy of Nursing, the Palliative Care Innovation Award from the Center to Advance Palliative Care, and in recognition of her leadership, the Amy J. Berman Geriatric Nursing Leadership Award is given annually by the international honor society of nursing, Sigma Theta Tau.
Dr. Tinetti is Professor of Medicine and Chief of Geriatrics at Yale School of Medicine. Dr. Tinetti was the first investigator to show that older adults could reduce their risk of falls and fall injuries, thus avoiding one of the major contributors to functional disabilities.
She is currently leading a national effort to develop and test an approach to decision-making and patient-clinician communication that focuses on the health priorities of older adults with multiple conditions. Her group created a clinically feasible method for helping individuals identify their health priorities (that is, the health outcome goals they most desire given the healthcare tasks and activities they are willing and able to do to achieve these outcome goals).
They also developed tools for clinicians caring for persons with multiple conditions to translate these health priorities into care options and work with patients and each other to align care with these health priorities.
She also chairs a group of advisors helping health systems become Age-Friendly. Dr. Tinetti provides clinical care to older adults and Yale New Haven Health. She has received numerous awards and is a member of the National Academy of Medicine and is a MacArthur Foundation fellow.
In 2007, Marcia Donziger founded the non-profit organization, MyLifeLine.org, with a vision to transform the cancer experience through community and connection. As a cancer survivor herself, Marcia believes a strong support network is critical to healing and recovery. In January 2018, she led the organization to merge with the Cancer Support Community (CSC) to increase organizational capacity and scale its digital services in an innovative, groundbreaking way. Marcia now serves as CSC’s Vice President of Digital Strategy and Business Development.
The Cancer Support Community is a global non-profit network of 175 locations, including 47 CSC and Gilda's Club in-person support centers, eight health-care partnerships, and satellite locations that deliver more than $50 million in free support services to patients and families annually. In addition, CSC administers a toll-free helpline and produces award-winning educational resources that reach more than one million people each year. The MyLifeLine platform is the centerpiece of the CSC digital strategy providing the foundation to expand into the “Gold Standard” in online, personalized cancer support and navigation for all.
Marcia has been honored with the John Hickenlooper Unsung Hero Award and the Denver Channel’s Everyday Hero Award. MyLifeLine has been featured on the ABC, NBC and FOX affiliates in Denver and in the Journal of Clinical Oncology, The Denver Post, CURE magazine, and Colorado Expression magazine, among others. Marcia has spoken before numerous audiences, including the European Society of Gynecological Oncologists as an advocate for cancer patients and their families. Marcia grew up in Orange County, California, and currently lives in Denver, Colorado, with her 13-year old twin boys.
For more information, visit www.MyLifeLine.org. So that no one faces cancer alone®.
Jackie’s healthcare journey began when she graduated from the medical imaging program at St. Joseph Hospital in 1982. After graduation, Jackie worked at West Suburban Hospital, Lake Forest Hospital, and Advocate Lutheran General Hospital, where she is currently employed. Throughout her many years in the medical imaging field, she worked in general radiography, mammography, and computed tomography. Jackie has been working per diem at Advocate Lutheran General since 1989, which allowed her flexibility while raising four children.
Jackie earned her Bachelor of Science degree in Health Care Leadership at St. Francis University in 2017. Her degree allowed her the opportunity to obtain a part time teaching position at the College of Lake County, where she taught an “Introduction to Medical Imaging”.
Jackie is also all too familiar with the patient’s perspective after being diagnosed with Multiple Sclerosis (MS) in 2004. The loss of control and autonomy she experienced while going through the diagnostic process was traumatic, but it allowed her to gain a better understanding of the healthcare ecosystem. Jackie is passionate about women’s health, representing the patient voice, and health care innovation.
Catalina serves as the Chief Executive Officer for TruDataRx, an independent data analytics healthcare company. In this role, Catalina works closely with the clinical team and clients of TruDataRx to ensure an exceptional customer experience that results in meaningful savings in pharmacy benefits driven by rigorous evidence-based analytics.
Catalina has spent the past 6 years working in healthcare in a range of roles involving research commercialization, enterprise formation, and operations development. Previous to founding TruDataRx, Catalina was co-founded a a company committed to improving health by providing doctors and patients with the information they need to make wise decisions about prescription drugs, and also held positions at Dartmouth College as the Program Manager of innovations in translation and new initiatives at the Dartmouth Center for Healthcare Delivery Science.
Through these roles, Catalina worked with researchers and business professionals to create patient-centered, self-sustaining entities that address needs in the health care delivery system. Prior to Dartmouth, she worked as an economist for a large investment management firm, focusing on international financial markets. Catalina graduated cum laude from Dartmouth College.
Simon Stones is an award-winning patient leader, advocate, speaker and consultant, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. Simon was diagnosed with arthritis, inflammatory bowel disease, and fibromyalgia during his childhood, and also supports his parents who have a significant amount of chronic health conditions.
Together, these experiences have stimulated Simon’s interest in healthcare, driving him to improve the health and wellbeing of people with chronic health conditions. He is currently a Ph.D. Candidate at the University of Leeds, where he is developing a framework to improve the supported self-management of arthritis by children and their families. Simon is also an active patient research partner on various national and international research projects and initiatives and is a board member of four associations: the European Network of Arthritis in Children (ENCA), the European Network of Fibromyalgia Associations (ENFA), Fibromyalgia Action UK and RAiISE – Invisible illnesses in schools and education.
Tami Dew Rich, a 3rd Generation member of the landmark Framingham (MA) Heart Study, completed her MBA at Babson College. After spending 20 years working in hospital finance, strategic quality improvement, organizational transformation and practice management, she transitioned to become her son’s full time case manager.
Jameson, diagnosed at birth with congenital heart disease, had 3 open heart reconstructive surgeries before he was 2 1/2 years old. When he was 9, he began facing 10 years of serious complications (including diagnosis of the rare illness plastic bronchitis). Thanks to 2 stellar teams of clinicians (first in Boston and now in New York), today Jamie at 25 is a fairly healthy filmmaker, ePatient advocate, speaker and writer living in Manhattan, where he is finish-editing his memoir about growing up with chronic illness.
In 2009, Tami joined Boston Children’s Hospital Family Advisory Council, shifting focus from advocating for 1 to helping improve the patient / family experience for families like hers. Her Team took top prize at 2014’s BCH-MIT Peds Hackathon, disrupting the hospital discharge process with an innovative App for patients & families. Focused now on improving her own health status, Tami looks forward to sharing her RPM experience with Htn.
Jen Horonjeff, PhD, is the Founder and CEO of Savvy Cooperative, a patient-owned co-op that helps companies and innovators connect directly with patients/consumers in order to get the insights they need to build better healthcare solutions. Jen was named one of the 50 Most Daring Entrepreneurs of 2018 by Entrepreneur Magazine, alongside the likes of Elon Musk, Chance the Rapper and Alan Hamilton. Jen is deeply committed to human-centered design in healthcare, and has firsthand knowledge as both a patient and professional. She grew up with juvenile idiopathic arthritis and survived a brain tumor as an adult. She is also a health outcomes researcher at Columbia University Medical Center, a human factors engineer, and an FDA Consumer Representative. Jen earned her Master’s in Ergonomics and Biomechanics and PhD in Environmental Medicine, both from New York University. Utilizing her unique perspective, Jen continues to champion patient engagement in research and industry on numerous projects and committees around the globe. She strives to give patients a platform to have their voices and expertise be heard, valued and included--because the future of healthcare is co-designed with patients.
Seth is a rare disease advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. He has done over 18 talks, with the most notables ones being at TEDxNatick and Global Genes Patient Advocacy Summit. Seth’s passion is driven by his mother’s 17 year battle with the rare, genetic disease known as Huntington’s Disease (HD). At the age of 20, Seth also tested positive for the disease and is a gene carrier. He is an active member of the HD community and currently sits on the Board of Trustees for the Huntington’s Disease Youth Organization (HDYO).
Seth has a masters in nonprofit management from DePaul University and currently resides in Washington, D.C. where he works as the Partnerships Manager for Inspire.
Adrienne Boissy, MD, MA, is Chief Experience Officer of Cleveland Clinic Health System and a staff neurologist at the Cleveland Clinic Mellen Center for Multiple Sclerosis. Dr. Boissy leads initiatives to address and improve every aspect of a patient’s encounter with the Cleveland Clinic Health System—from their physical comfort to their educational, emotional and spiritual needs. The Office of Patient Experience is responsible for a range of programs and services across the hospital, including service excellence, communication skills training, spiritual care, bioethics, data intelligence, volunteer services, and the ombudsman’s office. Recent work has focused on patient engagement and the digital experience of the future.
Dr. Boissy chairs the Empathy and Innovation summit, the largest independent summit on patient experience in the world. She serves as Editor-in-Chief of the Journal of Patient Experience and serves on the advisory board for Option B. She has published extensively about relationships and empathy in healthcare, and advocates for major operational changes in healthcare systems for a more humane experience, noted in her TED talk “Can empathy help heal healthcare?” She has been featured in the Wall Street Journal, NPR, Washington Post, Forbes, and the Atlantic, among others. A Harvard Macy scholar, she has been nationally recognized as a leading physician executive.
Doug Lindsay got sick at 21 and spent the next 11 years home bound and bed bound until he figured out what was wrong, developed novel treatments to keep his rare autonomic-adrenal condition at bay, and eventually developed the innovative surgery used to fix him.
During Lindsay’s 14-year medical odyssey he worked with 35 senior faculty at 28 institutions, developed new uses for 5 existing prescription drugs, won a national first court case protecting patients’ rights, and developed the concept for the two successful, innovative adrenal surgeries used to treat his case.
Now, Doug Lindsay is a nationally recognized speaker on role of hope and character in innovation – speaking at TEDx, Stanford Medicine X, Dell Medical School UT-Austin, and elsewhere – and he provides in-depth Personal Medical Consultant Services to a few select clients.
Lisa is currently co-founder of Central Pain Nerve Center . A reviewer for the BMJ , 30+ years experience of research in law & health, 20+ years as a Paralegal Specialist of Criminal Law at the State Attorney’s Office, Orlando, Florida, until stroke and cancer interrupted her professional life.
She attends conferences & meetings to give the Patient Perspective when physically able. Author of: At The End of The Day and numerous articles published for other organizations. Lisa is an avid advocate as well as a patient of Central Pain Syndrome post-stroke, an intractable pain condition; in addition to Grave’s Disease; post-thyroid cancer, Stiff Person Syndrome and other autoimmune conditions.
Irma Rastegayeva is a Boston-based Consultant and Entrepreneur Coach at the intersection of health, technology, humanity and storytelling. Named in the Top 30 Women in Tech, Irma is recognized as a top influencer in DigitalHealth, HealthTech, Personalized Medicine, IoT and at major health industry events including ConnectedHealth, HIMSS, Exponential Medicine (xMed), CES and HLTH. Irma serves on the boards of Ideas in Action and the American College of Healthcare Trustees.
Her Mother’s diagnosis of stage IV MBC 24 years ago launched Irma into patient advocacy and a 12-year caregiver’s journey. Over time, Irma helped people with various medical and mental health conditions, including advanced MS, heart disease and blindness. Irma's passion for patient engagement, disease prevention/early diagnosis and improved healthcare outcomes continues to fuel her. Currently in the midst of her own cancer journey with PTC, Irma’s resolve to be an ePatient is even stronger.
Irma’s professional career spans two decades and includes roles as a software engineer in medical software, devices and life sciences and senior engineer, program and technology manager at Google. Irma now combines deep technical expertise, product development experience with patient advocacy and community engagement at eViRa.Health, a marketing consultancy. With eViRa’s platform of 400K followers and organic reach in the millions, we are helping individuals, companies and brands achieve massive visibility across the social media landscape. We evangelize, educate and engage on Healthcare, HealthTech, Patient Experience and more.
Irma earned Master of Science degree in Systems and Software Engineering from Boston University and Master of Science degree in Engineering Management from Tufts University.
Bob Tufts is a Clinical Assistant Professor at the Sy Syms School of Business at Yeshiva University, where he teaches courses in the Business Strategy and Entrepreneurship Department. He has a degree in Economics from Princeton University, an MBA in Finance from the Columbia University School of Business and worked on Wall Street for over twenty years in futures and foreign exchange and in domestic equities sales and trading. His first job upon graduation from college was as a professional baseball player. He pitched in the major leagues during parts of the 1981-1983 seasons for San Francisco Giants and the Kansas City Royals. A founder of My Life Is Worth It and a 10 year cancer survivor (multiple myeloma), he advocates on behalf of patients at medical conventions, seminars, via social media and in columns in various traditional media outlets.
Dr Fombu is a recognized authority on the convergence of digital technologies and healthcare. He is an author, physician and medical futurist with over 10 years combined experience in clinical medicine, drug development, medical affairs, digital medicine, BD&L, research, pragmatic trials and product lifecycle management strategy in biopharmaceutical industry and private equity.
His current focus is on how digital technologies can be leveraged to better measure healthcare related product’s real world effectiveness and value, and also to design more comprehensive disease management systems in partnership with digital health startups, payers and providers.
In addition to his book, The Future of Healthcare: Human and Machine Partnering for Better Outcomes, Dr. Fombu has authored multiple research papers and abstracts in renowned peer reviewed journals. As a medical futurist and 2017 winner of the prestigious New York City Health Business Leaders Boldest Digital Health Influencer Award, Dr Fombu is a champion and advocate for value based healthcare, personalized medicine, mhealth, nanotechnology, big data, artificial intelligence, machine learning and digital medicine. He serves as an external advisory board member at the Massachusetts Institute of Technology’s MIT.nano project.
Dr Fombu did his clinical training at Emory-Crawford Long Hospital and holds an MBA from both Cornell University’s Johnson School of Business and Queen’s University’s Smith School of Business. He also earned a certification in Artificial Intelligence: Implications for Business Strategy from MIT’s Sloan school of management and Computer Science Artificial Intelligence Lab. He lives in New York City.