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Interoperability Matters

Consumer Engagement Strategy Workgroup

Established by the Interoperability Matters Leadership Council, the Consumer Engagement Strategy Workgroup will develop strategies to meet consumer needs.

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Workgroup Purpose

The Consumer Engagement Strategy Workgroup will gain an understanding of consumer experiences, priorities, and recommendations; and develop short and long-term cross-industry strategies for meeting consumer needs. The recommended strategies will be provided to the Interoperability Matters Leadership Council and Sequoia Board.

Deliverables:

Review, evaluate and translate the Consumer Voices Workgroup recommendations into cross-industry strategies to advance consumer engagement, access education, and related policy change.

Workgroup Charter

Focus Areas

  • Reducing consumer / caregiver burden
  • Equitable consumer engagement
  • Consumer education
  • Consumer access
  • Interoperability policy

Two Work Phases

The Sequoia Project identified two consumer engagement goals: listening to consumers and acting on what we heard.

Phase 1

Consumer Voices Workgroup

Consumers will share their experiences, priorities, and recommendations for accessing, using, and sharing their health records. The goal of the group is to:
  • Bring the consumer's voice to The Sequoia Project's Work
  • Better understand the barriers consumers face
  • Inform strategies to address those barriers
Read Report of Findings
Phase 2

Consumer Engagement Strategy Workgroup

This group is open to all members of The Sequoia Project. The goal of the group is to:

  • Gain an understanding of consumer experience as it relates to health data interoperability
  • Explore priorities and make recommendations
  • Develop short and long-term cross-industry strategies for meeting consumer needs
Join the Workgroup

Personal Health Data

What Patients Need

Personal Access

All of my health information is readily accessible to me and my caregivers in one place when I need it.

Care Team Access

All of my data is readily accessible to all of my care team through their EHR, regardless of their practice affiliation.

Usefulness

I can understand my data and health information makes sense to me.

Awareness and Education

I understand my rights to data access, how and by whom my data is used and can advocate for myself and others.

Moving to Action

Goal: Patients facing a health crisis know how to access their data, who to contact if they can’t and where to report violations of their data access rights.

Objectives

Drive industry-wide excellence in notifying patients of their data access rights

Create materials that can be adopted by industry and advocacy groups about data access rights

Actively promote and incentivize adoption of data rights awareness

Tactical Plan

Best Practices

Develop industry-wide “best practices” and recommendations for providing readily accessible and obvious information to consumers about their rights to access their data

Industry Pledge

Develop industry “pledge” to adopt recommended best practices

Tool Kit

Create tool kit with informational and digital assets that can be adopted by industry and placed where patients can find them in their time of need

Policy Proposal

Create recommendation to ASTP/ONC to require placement of information in obvious, accessible location in EHR for all certified HIT

Workgroup Leadership

Workgroup Co-Chairs

Brian Van Wyk

Epic

Cathriona Dolphin-Dempsey

Stanford Health Care

Anna McCollister

Four Lights Consulting, LLC

Workgroup Roster

American Medical Association

Assistant Secretary for Technology Policy

AthenaHealth

Azuba Corporation

BluIP

Ciitizen

Clinical Architecture

Consultants/Patient Advocates

Contexture

Cure SynGAP1

Deloitte

eClinicalWorks

eHealth Exchange

EHRA

Enlightening Results

Epic

FastenHealth

FindHelp

Global Genes

Government of DC

Hassanah Consulting

Hawai’i Pacific Health

HealthMark Group

Humana

IBM

inTandem Health

JHCP

Koss on Care LLC

Lifeline Biosciences

Marble

MatchRite

Michigan Health Information Network

MRO Corporation

Netsmart

New York Presbyterian

Oliver Wyman

OneRecord

Oracle Corp

Patientory

Rare Dots

Ruvos

Sandwych

Savvy Cooperative

Serving Communities HIO

Smile Digital Health

Stanford Health Care

Stoa Medical

The Marty Firm LLC

Verisma

WellConnector

 

Meeting Material and Recordings

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Want to Join the Consumer Engagement Strategy Workgroup?

Ready to shape the future of consumer engagement and health IT interoperability?

Complete the form to be contacted about joining this vital workgroup.

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Why Consumer Voices Matter

Learn first-hand from our workgroup members why it is important to develop strategies to make it easier for all consumers to access, use, and share health data while keeping it private and secure.

My HMO has a patient portal where I can access information from my visit by using a drop-down menu by the physician’s name. But not all the HMO’s physicians that I see post information. My PCP does, but specialists don’t, and urgent care doesn’t. So, I have incomplete records.
I am a caregiver for my uncle, who is insulin dependent. I can’t get his prescription refilled through a patient portal. I have tocall the doctor’s office and leave a message, then wait to see if I hear back, then call back. His prescription wasn’t refilled in time and now he’s in the hospital.
They [doctors’ offices] make you go around in circles. If you call to refill a prescription and leave a message, they never get back to you and if you use the patient portal, staff monitoring the portal messages say they have 24-48 hours to read the message and then must wait to talk to the doctor before refilling the prescription. It’s no faster using the portal when it comes to refilling prescriptions.
I called my Mom’s PCP several times requesting a prescription refill. No one called back. When we finally went to the office in person, I realized why. Behind the reception desk were rows upon rows, floor to ceiling, of filing cabinets of paper medical records. Staff was carrying armfuls of patient folders around. They were swamped and buried in mountains of paper. Which led to Mom not getting her medication, becoming ill, and being hospitalized.
Not having images available in the patient portal is really frustrating for me. I get frequent MRIs and X-rays to stay on top of my medical condition. But I can only access the radiologist readings that are filled with medical jargon and difficult to navigate. I have to request the image separately for each location I want it sent for second opinions.
My primary care doctor has most of my medical records. They have a patient portal but ask patients not to use it because it’s confusing, not easy to use, and they are waiting to upgrade to a new one.
I wanted to access medical records from twelve years ago. I was told, Oh, we don’t need to keep your records that long. I didn’t know that. So now there’s no way for me to access the historical records I need.
I have to keep a list of several patient portals, user IDs, and passwords on a Google doc that I share with family members to keep track of all my doctors and medical records….
I have a chronic condition and want to be able to easily get second opinions but it’s not always easy. I have to play telephone tag with the doctor’s office because I can’t access images from the patient portal…
I prefer to have test results and reports available to me as soon as they are available because I found out my doctor didn’t discuss some of the results with me, which was worrying because the test showed I was pre-diabetic, and I didn’t have another appointment scheduled with the doctor.
I was at the hospital emergency room and asked a family member to go to the house and take pictures of pill bottles and text them to me so that the doctors would know what medications the patient was taking.
Requesting medical records brings everyone dealing with a catastrophic diagnosis to their knees. It shouldn't be this complicated...

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