Workshop Introduction and Long-Term Goals

• Talk Title: Towards better data harmonization and linking across silos with coordinate data architectures, data models and cooperative agreements
• Speaker: Yuri Quintana, PhD, Chief of Division of Clinical Informatics, Beth Israel Deaconess Medical Center.
• Bio: https://research.bidmc.org/yuriquintana

Yuri Quintana, Ph.D. Chief of Division of Clinical Informatics, Beth Israel Deaconess Medical Center

This session discussed the objectives of the conference

1. Engage national-level leaders to Identify the top challenges in cancer research and care that require real-evidence data generation and collaboration across institutions.
2. Discuss expectations and requirements for collaborative precision oncology and a national learning health system.
3. Identify data sources, stakeholders, and connections needed to tailor care for each patient’s clinical history, genomics, geography, and social determinants of health such as race, gender, sexual orientation, economic status, education, access to care, neighborhood effects, and social support.

Panel 2: Platform Requirements for Collaboration

Session Chair: Leon Roseblit, MD, Collaborating Scientist, DCI

Terminology Perspectives: Dr. Andrew Kanter (He/Him), Former Chief Medical Officer at IMO / Asst. Prof. in Clinical Biomedical Informatics & Clinical Epidemiology at Columbia University https://www.linkedin.com/in/andrew-kanter-9668851/ 

Data Sharing Perspectives: Dr. Douglas Fridsma, Chief Medical Informatics, Medical Informatics Officer, Former President and CEO, American Medical Informatics Association https://www.linkedin.com/in/dfridsma/

This session discusses the Platform Requirements for Data Harmonization and Governance.

• What is required for data harmonization? 
• How do we ensure there is equity and diversity in the data?
• Where would the data be stored? 
• What are data governance principles?

DCI Network Keynote – Future directions for real-evidence data generation

FDA Perspectives - Dr. Hilary Marston, U.S. Food & Drug Administration https://www.linkedin.com/in/hilary-marston-ab348/

This presentation provides

1. Overview of the FDA RWE Framework  

2. Notable RWE Approvals & Awards

3. Future Directions

DCI Network Keynote – Lesson Learned from National Initiatives 

Reflections on National Cancer Collaboratives - Greg Simon, Consultant Simonovation, LLC, Former Director, Biden Cancer Initiative https://www.linkedin.com/in/simonovation

This take reflects on lessons learned from the early days of the Biden Cancer Initiative and collaborations between private and non-profit sectors.

Panel 1: What do we want for collaborative precision oncology? Who should be involved?

Session Chair: Steve Labkoff, Quantori and Collaborating Scientist, DCI.

Perspective on Cancer Screening – Dr. Timothy Rebbeck, Vincent L. Gregory, Jr. Professor of Cancer Prevention, Epidemiology, Harvard T.H. Chan School Of Public Health, Professor, Medical Oncology, Dana-Farber Cancer Institute, and Director, Zhu Family Center for Global Cancer Prevention at the Harvard TH Chan School of Public Health https://www.linkedin.com/in/timothy-rebbeck-73560292/

Perspective on Cancer Treatments – Dr. Jeremy Warner, Professor of Medicine at Brown University and Director of the Center for Clinical Cancer Informatics and Data Science (CCIDS), https://www.linkedin.com/in/jeremy-warner-39001512/
 

The goals of this session are to discuss the Requirements for Collaborative Precision Oncology:

Dr. Edward H. (Ted) Shortliffe, Chief Emeritus at the Journal of Biomedical Informatics, Former President and CEO of the American Medical Informatics Association

Goals of Talk:

1. Reflect on Howard Bleich – the man and his professional contributions over a half-century

2. Summarize the waxing/waning roles of data and knowledge in the field of biomedical informatics

3. Summarize where we are today in that evolution, with suggestions for the future

Speakers: Leon Rozenblit, JD, PhD, Executive Director, Q.E.D. Institute; Collaborating Scientist, Division of Clinical Informatics, Beth Israel Deaconess Medical Center; Lecturer in the Practice of Management, Yale School of Management.

Speakers: Alex Jadad, MD DPhil LLD FCAHS, Founder, Centre for Digital Therapeutics; Research Professor (Adjunct), Keck Medical School, University of Southern California; Principal, Vivenxia Healthcare Consulting
Tamen Jadad-Garcia: Partner, Vivenxia Healthcare Consulting; Growth Strategist, Good Energy

Speaker: Paul Barr, PhD, Associate Professor, Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College

With advances in natural language processing and machine learning, ambient recording of clinic visits is emerging and will quickly be commonplace healthcare over the next five years. In this talk, Dr. Barr will provide examples of AI-powered applications of ambient recordings to support clinicians, patients, and health systems. While optimistic about the potential benefits, Dr. Barr will also raise the foreseeable ethical challenges that his colleagues and Dr. Barr have identified to the use of ambient recording and make the case that patients, their care partners, and clinicians must remain central to development, implementation, and oversight.

Speaker: Kiran Dattani, MBA, MPH, Architecture & Cloud Enablement Specialist, Google Cloud Healthcare and Life Sciences

Kiran Dattani will present a compelling case on the use of Google tools in healthcare. The presentation will focus on building a rich patient experience in the age of AI and GenAI, emphasizing the transformative potential of these technologies. Dattani will discuss the use of Search, Vision, and Conversation tools for both patients and providers, highlighting how these tools can enhance healthcare delivery and patient engagement. The presentation will delve into the various language models - LLM, SLM, TSM - discussing their different sizes, purposes, and fits in the healthcare context. Dattani will address the importance of grounding patient information in the age of GenAI and LLMs, underscoring the need for accurate, reliable data in improving patient outcomes. The presentation will demonstrate the immense potential of these tools in revolutionizing healthcare.

Oscar García-Pañella, PhD, Gamification Director, Cookie Box; Academic Director, ENTI, The Videogame School, University of Barcelona

In this session, Oscar García-Pañella will explore the intersection of gamification and healthcare, focusing on how gamification principles can enhance patient engagement, improve education, and empower patients throughout their healthcare journey using AI-driven approaches. The session will begin with an overview of gamification basics, defining it as using game elements and highlighting its benefits in healthcare. Examples of gamified interventions will be discussed, including personalized education materials created through co-design with patients. The session will conclude with a summary of best practices for implementing gamification in patient engagement, emphasizing transparent communication and balancing patient autonomy.

Speakers: Nuria Pastor Hernández, MSc, CEO and Co-Founder, Vitalera

Speaker: Alexander Fanaroff, MD, MHS, Assistant Professor of Medicine, Division of Cardiology, University of Pennsylvania

Speaker: Yuri Quintana, PhD, Chief, Division of Clinical Informatics, Beth Israel Deaconess Medical Center; Assistant Professor of Medicine, Harvard Medical School; Senior Scientist, Homewood Research Institute

This presentation will review the latest evidence on the innovative uses of technology for patient engagement and education. It will examine various technologies, including mobile health apps, AI-driven tools, and interactive platforms, showcasing their impact on patient outcomes and adherence to treatment plans. Through case studies and clinical trial data, the presentation will highlight successful implementations and the measurable benefits these technologies bring to patient care. Additionally, it will address the challenges and considerations for integrating these technologies into healthcare practices, emphasizing the importance of data privacy, user-centered design, and regulatory compliance.

Speaker: Dr. Anjum Khurshid, MD, PhD, Chief Data Scientist, Sentinel Operations Center; Member of the Faculty, Harvard Medical School

In this talk, Dr. Anjum Khurshid, a leading health informatics and data science expert, will introduce FHIRedApp, a revolutionary patient engagement platform designed to enhance patient access to their health data. He will discuss the platform's innovative features, including integrating social determinants of health data and using interoperability standards for data exchange. Dr. Khurshid will also share real-world case studies demonstrating the impact of FHIRedApp on patient experiences and explore future opportunities for expanding the platform's reach and functionality. Attendees will gain valuable insights into how FHIRedApp represents a significant leap forward in empowering patients to take control of their health data and actively participate in their healthcare journey.