We’re honored to have the following speakers present and be a part of the 2nd annual SPM Conference.
Institute for Next Generation Healthcare
Jason Bobe is Associate Professor and Director of Democratized Health Innovation at the Institute for Next Generation Healthcare (INGH) at the Mount Sinai School of Medicine.
He attempts to produce research efforts that people actually want to join. He works on prototyping collaborative and participatory models of biomedical research and citizen science. With a focus on (a) greatly expanding the rates of participation in organized health research, (b) broadening the types of contributions participants in research are able to make, (c) promoting discovery & engagement through participant-centered research design and “equal access” data sharing practices, (d) the creation of well-consented public resources via the “open consent” framework, (e) building research networks and communities of practice around emerging technologies.
At Mount Sinai, he is a leader of the Resilience Project, an effort to learn how some people are able avoid disease despite having significant risk factors. Launching soonish here: www.resilienceproject.com
He is co-founder of DIYbio.org, OpenHumans.org, and PersonalGenomes.org
Patricia Flatley Brennan
National Library of Medicine
Patricia Flatley Brennan, RN, PhD, is the Director of the National Library of Medicine (NLM), a component of the National Institutes of Health (NIH). NLM is the world’s largest biomedical library and the producer of digital information services used by scientists, health professionals, and members of the public worldwide. Since assuming the directorship in August 2016 Dr. Brennan has positioned the Library to be the hub of data science at NIH and a national and international leader in the field.
Ivan started programming computers when he was a freshman in high school in 1963. He learned Fortran II on an IBM 1620 and has been working with computing devices ever since. After he left grad school (with an MS in Math, actually ABD), we went on to consult in a variety of industries: manufacturing, energy, legal, healthcare and finally, government.
He became the CIO of the Illinois Department of Healthcare and Family Services (the state’s Medicaid and Child Support agency) in 2005 and then moved on to be the CIO/CTO of the Illinois Health Information Exchange (ILHIE) until he retired from the state in 2015. As CIO he was charged with implementing the state’s All Kids program to insure all children residing in Illinois as well as working to upgrade the state’s MMIS. Ivan has attended and spoken at many MESC conferences as well. He published an article in IEEE Computer in February, Data Sharing, Really, reflecting on his time in ILHIE which provides some of the material for his talk.
He has been working on projects since leaving the state. He joined the Society for Participatory Medicine in July 2018.
Mighty Casey Media LLC
Casey Quinlan blends her background in network news and standup comedy to inform her health policy work. She writes, she speaks, she facilitates the Festivus Airing of Grievances in healthcare. Her favorite people to work with are those who want to fix the system, not serve the status quo.
Casey covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote Cancer for Christmas: Making the Most of a Daunting Gift about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a writer, she produces the podcast Healthcare Is HILARIOUS!, is an active member of the Society for Participatory Medicine, is the health literacy expert for the Patient Empowerment Network, and is part of the Lown Institute’s Right Care Alliance. She’s also a popular speaker and thought leader on healthcare system transformation from the ground up.
Casey was named an ePatient Scholar to Stanford’s MedicineX in 2013, and returned to MedX in 2014 as a session presenter. She participated in the development of the Patient and Family Engagement Roadmap, was recognized as a patient engagement expert by the WHO, and has been invited to participate in a number of projects involving patient-centered design in research. She presented at the first HIMSS Patient Engagement Summit, at the HIMSS Privacy & Security Forum, and at DellWorld, as a patient voice on topics from trust in the clinical relationship to data security issues in medical record interoperability. She has also appeared at the National Health Policy Conference, the Genetic Alliance’s Building Trustworthiness in PCORnet meeting, Health Datapalooza, HX Refactored, and the Healthcare CFO/CXO Summit.
Brennen Hodge is the Founder & CEO of Citizen Health, an impact organization rebuilding healthcare on an open & transparent marketplace. In this role, he is focused on developing technology to bring optimal health & affordable care to everyone, regardless of social standing. In the decade Prior to launching Citizen Health, he founded multiple tech startups with the latest being a pharmaceutical analytics platform. Brennen attended the University of Southern Mississippi and received his MBA with a B.S in Biochemistry.
Gabe Howard is an award-winning writer and speaker who lives with bipolar and anxiety disorders. He’s the host of the weekly Psych Central Show, an iTunes Top Ten podcast. He also co-hosts A Bipolar, a Schizophrenic, and a Podcast, which explores life through the unique double lens of a young woman living with schizophrenia and a guy living with bipolar. He also writes for WebMD, Psych Central, bipolar magazine, and other distinguished publications. You can find him online at gabehoward.com.
John M. Grohol
John M. Grohol, Psy.D. is the founder, Editor-in-Chief & CEO of PsychCentral.com, a psychologist, mental health and human behavior/technology expert, co-author of Self-Help That Works, author of The Insider’s Guide to Mental Health Resources Online, and a published researcher. He sits on the scientific board of the journal, Computers in Human Behavior and is a founding board member and current treasurer of the Society for Participatory Medicine. Since 1995, he has overseen Psych Central.com, the world’s leading mental health site offering information, resources, and over 250 support groups to over 7 million people each month. In 2018, Psych Central reached its 500 millionth visitor.
Angela and Grace Kennedy
Dr. Angela Kennedy is CEO of the Commission on Health Informatics and Information Management Education. Dr. Kennedy is a strong advocate for “Health Information Where & When You Need It”. She is recognized nationally and internationally for her work in the area of consumer health advocacy and health literacy, and is the former Director of the Center for Health Data Analytics and Department Head/ Professor for Health Informatics & Information Management at Louisiana Tech University. In addition, Kennedy is a former President and Chairman of the Board of Directors of the American Health Information Management Association (AHIMA). In 2015, Kennedy testified before the US Senate Health, Education, Labor and Pensions Committee and was appointed by the he US Secretary of Health Human Services to the Office of the National Coordinator’s (ONC) Health Information Standards Federal Advisory Committee and ONC Consumer Task Force. Dr. Kennedy serves as a director on the North Louisiana Go Care/Bayou Health Board of Directors and on the Louisiana Healthcare Quality Forum as a council member to the Consumer Health Task Force. In 2016, Dr. Kennedy was recognized as one of the Top 20 Professors and Minds in Health Informatics in the United States. Kennedy has received the Vantage Health Visionary Educator Award, both the Louisiana Health Information Management Association’s distinguished member and Career Achievement Awards, and is a past AHIMA Triumph Award winner. She is the 2017 AHIMA Distinguished Member.
Grace Kennedy is a 16 year-old consumer advocate and teenager on a mission to put health information in the hands of the consumer. Gracie is actively engaged in creating awareness on the importance of the use of personal health information to support continuity of care and improve health outcomes. Grace is a former Blue Cross Blue Shield, Louisiana Quality Forum “My Health My Way winner.”
Sarah Krüg is the CEO of CANCER101, a patient advocacy organization whose mission is to help patients and caregivers navigate the cancer journey and partner with their healthcare team to make informed decisions. Sarah is also the founder of the Health Collaboratory, a global innovations hub that paves the path for participatory co-design and collaboration in healthcare, and focused on amplifying the voice of the patient and caregiver in the design, development and continuous improvement of innovations. Innovations to amplify the voice of the patient include the Patient Shark Tank ® where over 16,000 patients and caregivers across disease states, have evaluated over 700 innovations across the globe, including research, technology, and education. In addition, The Health Collaboratory has implemented a participatory co-design methodology with patients and caregivers to launch innovations such as Prescription to Learn, a trusted ecosystem to help patients navigate next steps.
Sarah is the Acting Executive Director and Previous Past President of the Society for Participatory Medicine, a patient: clinician member driven organization whose mission is to enable collaborative partnerships between patients and healthcare professionals. Sarah also serves on the board of the National Organization for Rare Disorders and is Research Chair of the Cancer Education Network.
She previously held the position of Global Education Director in the Medical Education Group at Pfizer, as well as patient advocacy relations. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Pediatric Disease Management clinical pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center.
Doug Says, LLC
At 21, Doug Lindsay came down with a rare type of dysautonomia that left him homebound and bed bound for the next 11 years… until he figured out what was wrong, developed novel treatments to keep it at bay, and eventually developed the surgery that fixed him. Now, Doug Lindsay is a sought after keynote speaker and transformational thought leader who speaks to organizations of all types on the role that hope and character play in innovation, problem solving, and life.
IBM Watson Health
William D. Marder, PhD, is the chief data strategist at IBM Watson Health. Dr. Marder joined Watson Health as part of IBM’s acquisition of Truven Health Analytics where he had been part of senior management for over 20 years. During his tenure at Truven he had several roles. For many years, he directed research services for the federal government, private research and policy development organizations, and the pharmaceutical industry. As Watson Health’s chief data strategist, Dr. Marder leads the acquisition of strategic data assets and collaborates with others on ways to create value with existing and potential data assets.
For over 25 years, Dr. Marder has been involved in large-scale government and private research projects analyzing aspects of the healthcare delivery system. He has published research in the areas of physician supply, the economics of medical education, and studies focused on understanding the interactions between patients and providers. Before joining Truven Health, Dr. Marder was managing vice president of health services research and evaluation at Abt Associates.
Dr. Marder holds a PhD in economics from the University of Chicago.
The MITRE Corporation
Ms. Sheridan is an experienced long-term caregiver and patient advocate and has worked for 30 years in systems thinking and engineering. She is the principal investigator for the MITRE research project, Empowering Patients and Providers to Partner for Best Care, researching how information technology solutions can empower patients to collect and track active patient-generated data, effectively manage their conditions between appointments and fully partner with their care teams.
Ms. Sheridan combines her experience as a caregiver of chronic pediatric patients and a systems engineer to help the healthcare and health IT communities understand the complexities of managing chronic illness and to develop and provide tools that will ease the day-to-day burden of managing care. Ms. Sheridan advocates for the development of tools and processes that allow the patient’s story and voice to be captured and used to develop treatment plans that best meet the needs and goals of the patient. She is an experienced speaker and has advocated for solutions to empower patients and caregivers in over thirty national healthcare forums. Ms. Sheridan is the Department Head for the Enterprise Strategy and Transformation Technical Center at The MITRE Corporation, and has been a trusted advisor to senior government officials at the U.S. Food and Drug Administration (FDA), the Centers for Medicare & Medicaid Services (CMS) and the Veterans Health Administration (VHA). She also spent 18 years working in the satellite industry and received her MS in Astronautics and Space Engineering from Cranfield University, UK.
Kate Sheridan is a patient empowerment advocate, speaker and recent graduate of George Mason University. Kate’s experience as a pediatric chronic patient inspired her to become certified as an Emergency Medical Technician, and to pursue a B.S degree in Health Administration and Policy, with a long-term goal to increase patient empowerment and improve patient outcomes. She is currently pursuing a master’s degree in Comparative Social Policy at the University of Oxford.
Chief Innovation Officer, UPMC
As Chief Innovation Officer, Dr. Shrestha is responsible for driving UPMC’s innovation strategy. Dr. Shrestha also serves as Executive Vice President of UPMC Enterprises, pushing the needle in the pursuit of a unique blend of health care intelligence, technology expertise, and entrepreneurial drive to develop inventive and commercially successful solutions that address complex health care challenges.
He was recently recognized as “26 of the Smartest People in Health IT” by Becker’s Hospital Review, and was acknowledged as one of the “Top 20 Health IT Leaders Driving Change” and as a “Top Healthcare Innovator” by InformationWeek.