Discovery Workshop on eConsent: From Birth to End of Life

August 16, 2022 12:00PM – 4:30PM

The use of technology to enable electronic consent (eConsent) for how and when a person’s electronic health information is shared is central to placing patients in control of decisions regarding their data.  During this half-day workshop on August 16th at 12:00-4:30 pm ET, participants will explore technical standards and approaches to enable capturing, maintaining, and communicating a patient’s consent decision for sharing electronic health information throughout different life stages, within the context of applicable law. Participants will also explore capturing consent decisions to share EHI between healthcare providers and other non-HIPAA covered entities such as schools, courts, social services providers, employers etc.

Event Pre-Work Packet [PDF - 305KB]

Recordings for the plenary sessions and select breakout sessions are available in the agenda below.




12:00-12:10 pm

Welcome and Introduction

Watch the recording.


  • Stephen Konya, ONC
  • Tricia Lee Rolle, PharmD, MS, PhD, ONC
12:10-12:30 pm

Overview of Consent Policies and Regulations

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Where in a patient’s journey must consent be captured? When does the type of data or type of data requestor impact requirements for consent?

  • Kathryn Marchesini, JD, ONC
12:30-1:00 pm

Current State of Standards for eConsent

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What’s new to enable the capture, maintenance and sharing of an individual’s consent decision?

  • Pooja Babbrah, MBA, Point-of-Care Partners
1:00-1:30 pm

Panel Discussion: Equity by Design: Making eConsent Work for all People at All Stages of Life

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How can eConsent workflows be designed to work for all people? What does an ideal eConsent solution look like from a consumer perspective? Panelists discuss needs and functionality related to areas including user design, universal forms, model privacy notices, common language etc.

  • Moderator: Thomas Mason, MD, ONC
  • Carol Robinson, CedarBridge Group and Midato Health
  • Nancy Lush, Patient Centric Solutions
  • Ed Daniels, MS, Point-of-Care Partners
  • Tanissha Harrell, 211 San Diego/Community Information Exchange San Diego
1:30-2:10 pm

Breakout Sessions: Review of Pre-Work eConsent from Birth to End of Life

Each room will discuss eConsent for sharing electronic health information between healthcare providers (HIPAA covered entities) and with non-healthcare entities (Non-HIPAA covered entities such as schools, employers, courts, etc.).

  • Room 1: Birth and Maternal Health
    Moderators: Sue Kressly, MD, FAAP,  Pediatric Health IT SME, and Kressly Pediatrics, and LaVerne Perlie, MSN, BSN, RN, ONC
  • Room 2: Childhood
    Moderators: Kristine McCoy,  MD, MPH  Primary Care and Public Health Consultant, and Robert Graham Center & Angelina Sulaka, Esq, ONC
  • Room 3: Adolescence
    Moderators: Hannah Galvin, MD, FAAP, FAMIA,   Cambridge Health Alliance & Shift and Liz Turi,  M.Eng, CPHIMS, ONC
  • Room 4: Adulthood
    Moderators: Stephen Konya, ONC & Tricia Lee Rolle, PharmD, MS, PhD, ONC
  • Room 5: End of Life
    Moderators: David Wang, MD, Scripps Health & Carmela Couderc, ONC
2:10-2:30 pm


2:30-3:10 p.m.

Panel Discussion: Moderators Share Highlights from Birth to End of Life Breakout Discussions

Watch the recording.

3:10-3:40 pm

Breakout Sessions: Overview of Approaches and eConsent Solutions

Presenters showcase solutions and approaches for digital identification, granular consent and how to share consent decisions between entities.

Breakout 1 Recording
Breakout 2 Recording
Breakout 3 Recording

3:40-4:10 pm

Panel Discussion: What’s Needed for Scaling eConsent Services and Solutions?

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What roles exist for non-profits? For commercial companies? What’s missing from current approaches? How do we get past the pilot phase?

  • Moderator: Jocelyn Keegan, Senior Consultant and Payer Practice Lead, Point-of-Care Partners
  • Jim St Clair, Executive Director, Linux Foundation Public Health
  • Ryan Howells, MA,  Principal at Leavitt Partners
  • Daniel Stein, MPPM/MBA, President, Stewards of Change Institute 
  • Alan Swenson, Executive Director, Carequality
4:10-4:25 pm

Workshop Reflections: Driving eConsent and Equity at All Levels of Government

Watch the recording. 

County and federal government leadership reflect on the day’s discussion and ways to advance necessary work on eConsent.


  • Stephen Konya, ONC
  • Tricia Lee Rolle, PharmD, MS, PhD, ONC
4:25-4:30 pm

Thank You and Closing Remarks