The Future of Patient Engagement: Insights, Innovations, and Implementations

Cancer survivor Dave deBronkart, known as "e-Patient Dave," is a long-time passionate advocate for the patient’s view of healthcare and empowering patients, through both technology and changing the culture of care. A data geek before cancer, he was thrust into the headlines when he discovered garbage in his medical records, then learned he couldn’t readily review it all. Advocating in Washington for policy changes to fix that, he became known for the rallying cry “Gimme my DaM data” (data about me) and is a global keynote speaker for patient rights. He is a co-founder of the Society for Participatory Medicine, was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine, and is today avidly exploring how empowered patients are using AI in the work of getting the best possible care for their families.

Eric Perakslis, PhD, is the Chief Scientific and Data Officer of Pluto Health and the Senior Vice President and Chief Technology Officer, IMIDomics. Prior to this, he was the Chief Science and Digital Officer at the Duke Clinical Research Institute. He was previously a Rubenstein Fellow at Duke University, where his work focused on collaborative efforts in data science that spanned medicine, policy, engineering, computer science, information technology, and security. Immediately prior to his arrival at Duke, Eric served as Chief Scientific Advisor at Datavant, Lecturer in the Department of Biomedical Informatics at Harvard Medical School, and Strategic Innovation Advisor to Médecins Sans Frontières.

Eric was Senior Vice President and Head of the Takeda R&D Data Science Institute, where he built an integrated institute of more than 165 multi-disciplinary data scientists serving all aspects of biopharmaceutical R&D and digital health. Prior to Takeda, Eric was the Executive Director of the Center for Biomedical Informatics and the Countway Library of Medicine, an Instructor in Pediatrics at Harvard Medical School, and a faculty member of the Children's Hospital Informatics Program at Boston Children' Hospital.

During his time at HMS, Eric focused on the approval of the Department of Biomedical Informatics as a full academic department, the development of the NIH Undiagnosed Diseases Network, industry collaborations, leading the technology efforts for multiple Ebola response programs, and building active research programs in medical product development, regulatory science, and cybersecurity.

Prior to HMS, Eric served as Chief Information Officer and Chief Scientist (Informatics) at the U.S. Food and Drug Administration. In this role, Eric authored the first IT Strategic Plan for FDA and was responsible for modernizing and enhancing the IT capabilities as well as in silico scientific capabilities at FDA.

Prior to his time at FDA, Eric was Senior Vice President of R&D Information Technology at Johnson & Johnson Pharmaceuticals R&D and member of the Corporate Office of Science and Technology. While at J&J, Eric created and open-sourced the tranSMART clinical data system, which is now being freely used by hundreds of healthcare organizations. During his 13 years at J&J, Eric also held the posts of VP R&D Informatics, VP and Chief Information Officer, Director of Research Information Technology, and Director of Drug Discovery Research. Prior to working at J&J, Eric was the Group leader of Scientific Computing at ArQule Inc.

Eric has served on the editorial board of Cancer Today magazine and as the Associate Editor for Novel Communications for the Journal of Therapeutic Innovation and Regulatory Science. Eric has also served on Science and Technology Advisory Committees and in leadership roles for the American Society of Clinical Oncology, NuMedii, Precision for Medicine, the Survivor Advisory Board at the Cancer Institute of New Jersey, the Kidney Cancer Association, OneMind4Research, and the Scientist - Survivor program of the American Association for Cancer Research. Internationally, Eric has served as the Chief Information Officer of the King Hussein Institute for Biotechnology and Cancer in Amman, Jordan.

Eric has a PhD in chemical and biochemical engineering from Drexel University. He also holds BSChE and MS degrees in chemical engineering.

Alex Jadad is a physician, innovator, and philosopher who has revolutionized health and medicine through his pioneering work on networks of trust, eHealth and evidence-based strategies. For over 30 years his efforts have been focused on developing "high-tech and high-touch" approaches that leverage clinical research, public engagement and cutting-edge technologies like AI, alongside policy makers, heads of state, academics and leaders in the private sector. As a result he has shaped national healthcare systems, health policies and regulatory landscapes around the world.

He holds a Doctor of Philosophy degree from University of Oxford (UK), and has honorary doctorates in Arts and in Laws. He is the founder of the Centre for Digital Therapeutics in Toronto, a simulator of the future. He is the author of 12 books and hundreds of scientific publications, and the creator of the Jadad Scale, the most widely used tool to assess clinical trial quality, worldwide.

Glenda Thomas is the Founder and CEO of nCeptive-Daily Money Manager (DMM), and a passionate patient and rare disease advocate. Glenda serves on the DCI Network steering committee, co-leads the Beth Israel Deaconess Medical Patient, Family, and Caregiver Advisory Council (PFAC), and is a member of the Betsy Lehman State-wide PFAC. She sits on the Massachusetts Rare Disease Advisory Council, leads the New England MG Support Group for the Myasthenia Gravis (MG) Foundation, and an advocacy council member for argenx, UCB, and Alexion. Glenda's MG journey has been featured in publications like the Boston Globe and BioTech Week 2023. She has been a guest speaker at the MassBio 2023 and Patient Advocacy Summits 2019, along with various MG conferences. Prior to founding nCeptive-DMM, Glenda had a 32-year corporate career holding managerial positions in finance, learning, and business consulting at companies including Johnson and Johnson and IBM services.

Elizabeth (Betsy) Lowe is the mother of three teenagers and following a complicated pregnancy and delivery she became a Patient & Family Advisor at Beth Israel Deaconess Medical Center in 2010. She served on various hospital committees at BIDMC including the Ethics Advisory Committee and the Patient Site steering committee. She has been actively involved in work that addresses medical error and participated in “Patient Teachers in Patient Safety” workshops at various hospitals in the Boston area. Betsy is currently on the DCI Network steering committee, serves as a Patient Advisor to Open Notes and sits on their Pediatric Collaborative working group. She has co-authored several research papers, the most recent, focusing on the development of a patient-centered framework to identify gaps in the diagnostic process. Betsy previously worked in corporate human resources.

Liz Salmi is the Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center. In this role, Liz helps clinicians, health systems, and technology developers understand through “the patient’s eyes” the changing nature of patient-clinician communication in the age of information transparency. As a person living with a malignant brain tumor, Liz is passionate about helping all people engage in their own health care by improving their experience as patients. She received a PCORI award as a "patient PI," and co-authored the "Step-By-Step Guide to Peer Review," promoting patient involvement in research review processes. Her interests include clinical informatics, citizen science, and community-based co-design.

A practicing physician with training and experience in clinical informatics, Dr. Sands has worked in a variety of capacities in the healthcare IT industry for over 25 years and is a co-founder and the chief advocacy officer of the Society for Participatory Medicine. His digital technology career began at Beth Israel Deaconess Medical Center, where he trained in medical informatics and developed and implemented innovative systems to improve clinical care delivery and patient engagement, including clinical decision support systems, an EHR, and one of the nation’s first patient portals. This was followed by leadership positions including Cisco, Zix Corporation, and others.

Dr. Sands has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston’s Beth Israel Hospital.

Dr. Sands holds an academic appointment at Harvard Medical School and maintains a primary care practice at Beth Israel Deaconess Medical Center in which he makes extensive use of health IT—much of which he helped to introduce. In addition to practicing, Dr. Sands is currently the chief medical officer of WKD.SMRT.

Since 2016, Dr. Gordon has been an FDA lead for data standardization efforts including those for pharmaceutical quality, manufacturing, and labeling, as well as real-world data derived from health information technology for use in clinical research and pharmacovigilance. Before arriving at FDA, Dr. Gordon received his core scientific training with a Ph.D. in Molecular Microbiology from Tufts University Medical School, and then entered the public health domain, working on public health emergency preparedness and later with a focus on public health informatics.

Mark Zeidel, M.D., is Herrman L. Blumgart Professor of Medicine at Harvard Medical School and Physician in Chief and Chair of the Department of Medicine at Beth Israel Deaconess Medical Center in Boston. He has made important contributions to our understanding of how the kidney helps control body chemistry, as well as how the bladder functions to store and void urine, and has led several successful national initiatives in medical education. A national thought leader in quality improvement, he has pioneered the provision of highly reliable, cost-effective care at Beth Israel Deaconess Medical Center (BIDMC), where he helped BIDMC's achieve of outstanding clinical outcomes, recognized by the American Hospital Association, Society for Critical Care Medicine, the Leapfrog Group, and the Department of Health and Human Services. He has received numerous awards, including election to the American Society of Clinical Investigation and the Association of American Physicians, the Robert H. Williams Distinguished Chair of Medicine Award from the Association of Professors of Medicine and the Robert Narins Award for Medical Education from the American Society of Nephrology.

Charles Safran, MD, is a faculty member of the BIDMC Division of Clinical Informatics. His area of excellence in clinical expertise and innovation is demonstrated by his role in creating the electronic health record currently used at BIDMC and creating a new medical subspecialty, Clinical Informatics. His research grants from 1990-1999 supported the development of BIDMC Online Medical Record (OMR). This electronic health record supports BIDMC today and is a model for commercial systems widely used in the US and internationally. As President and Chair of the American Medical Informatics Association Board, he initiated the effort to create the new medical subspecialty of Clinical Informatics in 2004. He helped define the core contents of clinical informatics. He led the delineation of training requirements that enabled the American Board of Medical Specialties to recognize this new field as a subspecialty. He has worked closely with the American Board of Preventive Medicine to create the exam for physicians to become a diplomate. In January 2014, he was among the first physicians to be board certified in this new subspecialty. He has led efforts to influence health policy concerning health data to reuse in the United States and has testified to Congress concerning the use of information technology in healthcare. He organized three conferences in Europe to help harmonize health data policies across the European Union. In recognition of his national and international efforts to create a new medical subspecialty and to inform health policy concerning data reuse, was the Don Eugene Detmer Award for Health Policy Contribution in Informatics by the American Medical Informatics Association. In 2014, he was awarded the Morris F. Collen Award, the highest honor the American College of Medical Informatics gave to an individual whose personal commitment and dedication to biomedical informatics has made a lasting impression on healthcare and biomedicine.

Adam Rodman is a general internist and medical educator at Beth Israel Deaconess Medical Center and an assistant professor at Harvard Medical School, where he leads the task force for integration of AI into the medical school curriculum. He is also an associate editor at NEJM AI. His research focuses on medical education, clinical reasoning, integration of digital technologies, and human-computer interaction, especially with AI. His first book is entitled "Short Cuts: Medicine," and he is the host of the American College of Physicians podcast Bedside Rounds.

Adam completed his residency in internal medicine at Oregon Health and Science University in Portland, OR, and his fellowship in global health at Beth Israel Deaconess Medical Center while practicing in Molepolole, Botswana. He lives in Boston with his wife and two young sons.

As Director, R&D Lead at Pfizer, Craig Anderson is responsible for research, development, business and process-related functions across the International Labeling organisation. This includes topics such as electronic labelling, medicinal product information, digital health, and data standards.

In addition to having biopharmaceutical industry experience, Craig also has regulator experience from Health Canada where he led various informatics projects ranging from the implementation of IDMP to Structured Product Labelling.

Craig is also Co-lead of HL7's Vulcan accelerator project for electronic Product Information (ePI) and co-lead for HL7 BR&R's Pharmaceutical Quality (Industry Use Case) project.

Edith M. Eby is Vice President, Worldwide Medical & Safety in the Chief Medical Office at Pfizer. Edith leads global teams responsible for Global Medical Information; Global Transparency which includes Pfizer publications, Data Sharing, HCP payment and Clinical Trial Disclosure; Global Medical Operations including grants and collaborations; Medical Quality and Governance; Enterprise Medical Community Initiatives; and Expanded Access/Compassionate Use. Since joining Pfizer in 2002, Edith's roles have included Oncology Medical Affairs, Global Medical Governance Lead and VP External Medical Communications. Areas of expertise are global field based medical, medical affairs, compliance, education and research grants, pediatric oncology and pharmacy. Edith obtained her BS in Pharmacy and PharmD from the University of Texas and completed an Oncology Pharmacy Specialty Residency at UTMD Anderson Cancer Center. In 2012 Edith received the Pfizer Great Manager Award, in 2013 the HBA Rising Star Award and in 2018 the HBA Luminary Award. Prior to joining Pfizer, Edith practiced for nearly 10 years as a pediatric oncology pharmacist at Baylor College of Medicine, Texas Children's Cancer Center. Edith is a member of several professional organizations including HBA and ASCO.

Dr. Barr is an Associate Professor in The Dartmouth Institute for Health Policy & Clinical Practice, Biomedical Data Science, and a member of the Center for Technology and Behavioral Health, Geisel School of Medicine. He is trained in quantitative and qualitative methods more than 60 peer-reviewed publications (including publications in the BMJ, JAMA, NEJM), and significant funding from NIH and PCORI. His research portfolio includes the development and implementation of measures of shared decision making (SDM), the user centered design and evaluation of patient facing interventions to support SDM in individuals with depression, and the communication of medical information to promote self-management in older adults with multimorbidity and their caregivers.

In 2015 he formed OpenRecordings, a multidisciplinary group of researchers, clinicians, and patients to evaluate potential clinical utility of audio/video recordings of healthcare visits. He developed novel software, HealthPAL, a comprehensive audio personal health library that supports sharing of clinic visit recordings with patients and applies natural language processing to automatically identify key information in the visit. His team are currently leading several large federally funded trials assessing the impact of visit recording on the care of older adults in primary care.

Outside of work, Paul can be found chasing his two children up mountains and trying to keep up with them as they ski back down, coaching soccer in Lebanon, NH, teaching science at Mount Lebanon Elementary school as part of the Four Winds program and making furniture in the Dartmouth Woodshop.

Steven Labkoff, MD, is the Vice President of Development and Medical Analytics at Bristol Myers Squibb, and a co-founder of the DCI Network. He is a collaborating scientist with the Division of Clinical Informatics at Beth Israel Deaconess Medical Center. He co-leads the DCI Network group on AI in clinical decision support. With extensive experience in leveraging registry science, Dr. Labkoff has overseen the construction of two major programs: the Multiple Myeloma Research Foundation and the Follicular Lymphoma Research Foundation registries. These registries are among the world's largest multimodal, direct-to-patient registries within the oncology domain. Dr. Labkoff's expertise in designing and implementing these registries, ensuring their sustainability and relevance, makes him an invaluable resource for attendees looking to understand the intricacies of building next-generation registries.

Leon Rozenblit, JD, PhD, is the Executive Director of the QED Institute, a Lecturer in the Practice of Management at the Yale School of Management, and a Collaborating Scientist with the Division of Clinical Informatics at Beth Israel Deaconess Medical Center. He co-leads the DCI Network group on AI governance and patient-facing systems. He was formerly the Senior Director of Product and Strategy for the Registry Practice at IQVIA and the Founder/CEO of Prometheus Research, LLC.

Dr. Rozenblit is a recognized expert in data governance strategies, management methods, integration strategies, technology platforms, and data science methods for healthcare and research registries. He leverages his background in entrepreneurship, informatics, cognitive science, psychology, statistics, and law to help organizations optimize the value of their data. Over a 25-year career, he has served in leadership roles on over 50 major registry programs, including many high-profile clients like the Multiple Myeloma Research Foundation, the Susan G. Komen Foundation, the Simons Foundation, the American Society of Hematology, and the Cystic Fibrosis Foundation.

Dr. Rozenblit's extensive experience in data governance, management, and stakeholder engagement will provide attendees with practical insights into the legal, ethical, and operational considerations crucial to governing AI in healthcare. His expertise in navigating the regulatory landscape to ensure data privacy and security will be particularly relevant for attendees working in sensitive domains such as oncology and rare diseases.

Leon holds a JD from LSU Paul M. Hebert Law Center, where he served on the Law Review and was inducted into the Hall of Fame, and a Ph.D. in Psychology from Yale University, where he specialized in Cognitive Science and Higher Cognition.

Dr. Nick Jacobson is an assistant professor in the departments of Biomedical Data Science, Psychiatry, and Computer Science at Dartmouth College's Geisel School of Medicine. He's the director of the Treatment Development and Evaluation Core within the Center for Technology and Behavioral Health at Dartmouth. Dr. Jacobson also directs the AI and Mental Health: Innovation in Technology Guided Healthcare (AIM HIGH) Laboratory and has a strong interest in using technology to enhance the assessment and treatment of anxiety and depression. His work has focused on using passive sensor data from smartphones and wearable devices to improve precision assessment and generative AI to provide transdiagnostic app-based treatment for mental health. Dr. Jacobson has published over 100 peer-reviewed articles and secured over $5 million as PI and over $25 million in funding as a co-Investigator.

Yuri Quintana, PhD, is the Division Chief of the Division of Clinical Informatics at Beth Israel Deaconess Medical Center, a faculty member at Harvard Medical School, and founder of DCI Network and the DCI Network Blueprints AI Conference. With over 25 years of experience in the field, Dr. Quintana has constructed several large AI-based natural language interface systems, AI-based information filtering systems, and global medical disease registries. His deep understanding of AI and large-scale systems allows him to give attendees insights into best practices and potential pitfalls in the new AI landscape. Dr. Quintana's experience in navigating the complexities of patient-facing systems and international platforms will be particularly valuable for attendees seeking to build and manage their AI projects.

Jason Johnson is Chief Data and Analytics Officer and SVP of Informatics and Analytics at the Dana-Farber Cancer Institute in Boston, where he has served for 8 years. Jason’s team at DFCI includes research informatics, business intelligence, AI operations, bioinformatics, data governance, warehousing, scientific computing, and software engineering. Prior to joining Dana-Farber, Jason was Head of R&D at PatientsLikeMe, a patient-focused research company in Cambridge, MA. He came to that position after 16 years in the biotech and pharmaceutical industries in various leadership roles in computational sciences, informatics, and genomics. Jason has undergraduate degrees in Philosophy and Physics from Stanford University, a Master’s degree in Physics from the University of Cambridge (UK), and a PhD in Biophysics from Harvard University.

Dr. Amy Price serves as a BMJ Research Editor (Patient and Public Partnership) and is a Senior Research Scientist in the Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth College. Dr. Price has worked as a Neurocognitive Rehabilitation consultant and in International Missions before sustaining serious injury and years of rehabilitation. She emerged with an interest in AI and a goal to build a bridge between research methodology, research involvement and public engagement where the public is trained and empowered to be equal partners in health research. She is currently training 20 teams of investigators to work together in research innovation and implementation. Amy's experience has shown her that shared knowledge, interdisciplinary collaboration, and evidence-based research will shape and develop the future. She previously served as a Senior Research Scientist at Stanford School of Medicine.

Dr. Jerome Jourquin joined Susan G. Komen® in January of 2011. He is currently the Senior Director, Data Science and oversees ShareForCures®, Komen's breast cancer research registry connecting researchers with information from people who have or had breast cancer. In that role, he is also designing and coordinating big data programs, such as Komen's Big Data For Patients and Breast Cancer Challenge Hackathon, aiming at using big data to fuel scientific discoveries and accelerate the delivery of equitable, patient-focused care.

Prior to joining Komen, Dr. Jourquin completed a M.S. in Bioinformatics at Vanderbilt University (2010), where he developed GLAD4U, a National Library of Medicine-awarded web-service designed to build prioritized gene lists based on user queries. At Vanderbilt, Dr. Jourquin was also part of a multidisciplinary team of experimentalists, mathematicians, engineers, and bioinformaticists studying breast cancer invasion. Dr. Jourquin, a French native, earned a Ph.D. in Neurosciences (Marseilles, 2003) and a M.S. in Cell Biology and Animal Physiology (Paris, 1997). His research studies have been published in various scientific journals.

Dr. Avigan received his undergraduate degree from Columbia University and completed his M.D. at Yale University School of Medicine. He did his internal medicine and residency training at Columbia Presbyterian Medical Center and was the chief resident of Internal Medicine. He was a fellow, and later, chief fellow in Hematology/Oncology at Memorial Sloan-Kettering Cancer Center and research fellow at Rockefeller University. Dr. David Avigan joined the attending staff of Hematology/Oncology at Beth Israel Deaconess Medical Center in 1996, and became the chief of Hematological Malignancies and Bone Marrow Transplant Section in 2014, chief of the Hematology and Hematologic Malignancies Division in 2019, and the VP of Cancer Services at BILH and Director of the Beth Israel Deaconess Medical Cancer Center in 2022. He is a Professor of Medicine at Harvard Medical School. Dr. Avigan has established a translational research program for cancer vaccines at BIDMC as part of the Dana Farber Harvard Cancer Center. Laboratory efforts have focused on the development of dendritic cell based vaccines including a model in which patient derived tumor cells are fused with dendritic cells as a novel patient specific vaccine. Based on these findings, he has supervised a series of clinical trials to examine the immunologic and clinical efficacy of this vaccine strategy for patients with hematologic malignancies and solid tumors. His work has been supported by grants from the National Cancer Institute, National Institutes of Health, Department of Defense, Leukemia and Lymphoma Society, and Multiple Myeloma Research Foundation.

Kiran Dattani is a seasoned AI Specialist & Technologist with over 20 years of experience in the life sciences and pharmaceutical industries. He has a proven track record of driving digital transformation, automation, and data science initiatives for leading organizations like Pfizer and Google. Kiran's expertise spans enterprise architecture, cloud enablement, vendor management, and data visualization solution delivery. He has a passion for leveraging technology to improve patient outcomes and has been actively involved in public health initiatives, including patient advocacy and sustainable medicine efforts. Kiran is a recognized leader in the industry, having participated in numerous industry-leading initiatives, such as DCI network, GS1 consortiums. He is a strong advocate for using AI to enhance patient care and improve the overall healthcare system.

Alexander Fanaroff, MD, MHS is an interventional cardiologist and Assistant Professor of Medicine in the Division of Cardiology at the Perelman School of Medicine of the University of Pennsylvania. He completed medical school, internal medicine residency, cardiology fellowship, and interventional cardiology fellowship at Duke University. He received an MHS in clinical research from the Duke/NIH Clinical Research Training Program during a two-year research fellowship at the Duke Clinical Research Institute.

Dr. Fanaroff’s research focuses on identifying areas in which cardiovascular care is delivered inefficiently, variably, or is limited by difficulty changing patient/clinician behavior; developing solutions to improve care; and then testing those solutions in pragmatic clinical trials, with specific interests in increasing physical activity in patients with cardiovascular disease, and improving quality and reducing disparities in peripheral artery disease care. His research is currently funded by the American Heart Association, the National Institutes of Health, and the Department of Defense.