Enabling Patient Access to Health Data for Actionable Results

WEDNESDAY OCTOBER 18, 2023 FROM 12:00 – 5:00 PM ET
All-Virtual

Recent Department of Health and Human Services (HHS) policy is bringing patients unprecedented access to their health information. Join the Office of the National Coordinator for Health Information Technology (ONC) and Centers for Medicare and Medicaid Services (CMS) in October for a virtual event focused on patient access to health data. The day will bring together patients, providers, payers, and health IT developers to discuss how HHS policies are working in practice and how to maximize the impact of these policies. The event will also highlight educational tools and resources, such as patient-facing apps that enable the availability of patient information and make that health information easier to understand.

Attend the ONC and CMS patient access event to hear more about…

  • Patients’ experiences accessing their data, including the benefits and challenges they faced along this journey.
  • How the next generation of apps are connecting across new health information sources to bring together patients’ data and preferred tools to act on that data.
  • Clinicians who are at the forefront of helping patients access and understand their data, recognizing patient preferences and privacy concerns.
  • Innovative developers demonstrating how they are making patients’ data actionable, and the implementation challenges they face as they connect sources across the care continuum
  • Health care payers’ successes and challenges with making data available to patients. 

Don't miss this opportunity to learn about the latest developments in patient data access and how you can be a part of the path forward.

To ensure the widest participation possible, this event will now be all-virtual. Register today, and check out valuable information and resources about the patient’s right to their data on our website. If you would be interested in sharing a patient experience with accessing and using patient data, please share with us at https://www.healthit.gov/feedback.

View Speaker Bios [PDF - 726 KB]

 

Time

Session

12:00 PM

Welcome

  • Andrea Palm, Deputy Secretary for Health and Human Services

Patient Keynote

  • Mike Graglia, SynGAP Research Fund (SRF)

Opening Remarks

  • Jonathan Blum, Principal Deputy Administrator and Chief Operating Officer for CMS
  • Micky Tripathi, National Coordinator for Health IT
12:35 PM

Improving the Patient Access Experience: The Federal Landscape

Federal leaders from the U.S. Department of Health and Human Services (HHS) will discuss policies and programs that are bringing patients access to their health information. What do different HHS rules and policies designed to support patient access to their health data really mean for the individual patient or caregiver (e.g., Health Insurance Portability and Accountability Act (HIPAA), information blocking, FTC Act, and TEFCA)? This session will frame where we are now and the vision for what consumers should expect in the future regarding access, consent, and choice. Join the discussion to see how we can all support and shape the future vision of a better patient access experience.

  • Elise Sweeney Anthony, ONC (moderator)
  • Marissa Gordan-Nguyen, HHS Office for Civil Rights
  • Ryan Mehm, Federal Trade Commission
  • Alex Mugge, Centers for Medicare & Medicaid Services (CMS)
1:10 PM

App Demo #1: b.well

1:20 PM

Learning from Developers: Existing Solutions, Future Innovations

App developers play a large role in making patients’ data actionable. In this session, developers will demonstrate innovations in making data available for patients, talk about the vision for their products, and share any implementation challenges they are facing as they seek to connect with data sources. We also plan to learn how developers are getting feedback from patients and including them in the design of health care apps.

  • Alison Oelschlaeger, CMS (moderator)
  • Jennifer Blumenthal, One Record
  • Bettina Experton, Humetrix
  • Avinash Shanbhag, ONC
2:05 PM

Break

2:15 PM

Making Data Work for Patients: The Patient Experience

Patients now have more ways than ever to get, use, and share their electronic health information. Consumers expect a smooth, seamless digital experience. But what is the reality? When patients get their data, is it useful and in a format that they can understand? Can they and do they use it to make decisions about their health and their care? Hear from patients and patient advocates on consumer experiences accessing their data, including the benefits and challenges they faced on their journey. 

  • Ryan Howells, CARIN Alliance (moderator) 
  • Christine Bechtel, X4 Health
  • Anna McCollister, Patient Advocate, Patient Engagement and Data Use, Access and Governance
  • Michael Phillips, AARP
3:00 PM

Payer Role in Supporting Patient Access to Data

Payers are uniquely positioned to support patient access to health information given their direct relationship with their members (patients). A panel of payer thought leaders will discuss the opportunities and challenges of making data available to members. Panelists will share ideas on the impact of CMS policies to require payers to share data with members, strategies that might be used to encourage uptake among health plan members, suggestions for how government and industry can work together to promote better access to health information. 

  • Danielle Lloyd, Americas Health Insurance Plans (moderator) 
  • Kirk Anderson, Cambia Health 
  • Tab Harris, Blue Cross Blue Shield 
  • Gary Parker, Alabama State Medicaid 
  • Jason Teeple, Evernorth 
3:45 PM

Break

3:55 PM

App Demo #2: Docket

4:05 PM

Improving Patient Access: The Clinician Experience

A panel of providers will discuss how they are improving patient access to clinical data, addressing workflow issues through innovative changes to their practices, and promoting tools that can make the data more meaningful to patients. Hear from clinicians on successfully implementing patient education activities despite limited resources, their thoughts on the timing of making patient data available, and ideas for better understanding and respecting patient preferences for receiving data.

  • Will Gordon, CMS Innovation Center (Moderator) 
  • Sarah DeSilvey, Gravity Project 
  • Amy Gleason, Main Street Health    
  • Arif Kamal, American Cancer Society 
  • Melissa Maines, Florence Health
4:50 PM

Closing Remarks

  • Steve Posnack, ONC
  • Catharine Young, White House Office of Science and Technology Policy