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Interoperability Matters

Consumer Voices Workgroup

The Sequoia Project is elevating consumer engagement, because the consumer voice matters.

Press Release
View Report of Findings
View Overview of Findings
CONSUMER VOICES WORKGROUP REPORT OF FINDINGS & RECOMMENDATIONS

Helping to bring the consumer's voice to The Sequoia Project's work

The Consumer Voices Workgroup will help The Sequoia Project better understand the barriers consumers face in accessing, using and sharing their health information and to inform strategies to address these barriers. The Consumer Voices Workgroup will share experiences, priorities and recommendations which will be used by the future Consumer Engagement Strategy Workgroup to develop short and long-term cross-industry strategies for consumer engagement, access, education, and policy.

Workgroup Charter

Workgroup Deliverables

  • Establishing a Baseline of Understanding for the Consumer Experience
  • Understanding Consumer Priorities
  • Identifying Gaps Between Experience and Ideal
  • Establishing a Baseline of Understanding for Consumer Education Needs
View Report of Findings
View Overview of Findings

Two Work Phases

The Interoperability Matters Leadership Council chartered the Consumer Voices Workgroup to work in the following phases:

Phase 1

Consumer Voices Workgroup

Over the next 5 months 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
Phase 2

Consumer Engagement Strategy Workgroup

This group will be 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

Interested in Learning More About the Workgroup?

Be sure to stay up-to-date by signing up for regular updates involving Interoperability Matters. 

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Consumer Voices Workgroup Roster

Consumer Voices Workgroup members are engaged patients and caregivers from various regions within the continental United States. Over 87% of the workgroup members are caregivers to patients aged 1-81+. 

Workgroup Co-Chairs
Shannah

Shannah Koss

View Bio

Grace

Grace Cordovano

View Bio

Shannah Koss

Shannah Koss is a consumer representative on The Sequoia Project Board, President of Koss on Care LLC, Executive Vice President of Community Development for Livpact Inc., a technology platform, for caregivers and families, that simplifies the processes, communications and logistics of care and daily living.

She is an executive healthcare leader with over 30 years of achievements in government policy and healthcare, advancing organizations that span the industry - government, fortune 100, consulting, care services and technology companies.

Prior roles include Vice president of Avalere Health, Senior Vice President of I-Trax, Vice President of Health Solutions for Voxiva and HIPAA National Practice Executive at IBM. Shannah began her policy career at the White House Office of Management and Budget. Shannah is committed to promoting needed reform in the US health system through better consumer engagement. She has been a consumer advocate since 1980.

Grace Cordovano

Upon recognizing significant unmet needs and challenges in patients' experiences throughout their cancer diagnosis, Dr. Grace Cordovano, BCPA founded Enlightening Results in 2010. As the culmination of her life's experiential learning and education, Dr. Cordovano is dedicated to fostering personalized patient advocacy services, specializing in the oncology space.  She strategically guides patients & their carepartners through survivorship or end-of-life care planning with empathy, ensuring they are armed with the most pertinent, medically credible, easy to understand information and tools to make empowered decisions about their care. Dr. Cordovano is a champion for palliative care and clinical trials to be included earlier in cancer treatment planning paradigms. She amplifies the message that treatment planning must focus on treating the whole person, not just a clinical diagnosis. She is an advocate for leveraging digital technologies and data access to enhance treatment of the whole person in the context of life-altering diagnoses as well as for digital health and digital technologies to meet patients where they are.

With over 20 years of advocacy experience, she thoroughly understands the barriers patients face with information blocking and lack of transparency. Dr. Cordovano co-founded Unblock Health to empower patients and their carepartners to hold the ecosystem accountable and fight back against information blocking where patients are in their local communities.

Dr. Cordovano completed her Masters and Ph.D. in Biochemistry at Albert Einstein College of Medicine (Bronx, NY). She is a board-certified patient advocate via the international credentialing of the Patient Advocate Certification Board. She served as one of 5 national e-patient ambassadors for the Coalition of Compassionate Care of California, a PCORI research project funded by the Eugene Washington PCORI Engagement Award. Dr. Cordovano has been repeatedly recognized as Patient Advocate of the Year, most recently at the 2019 Health IT and Marketing & PR Community Conference Medigy Awards. She has been featured in StatNews, KevinMD, Tincture, The Healthcare Blog, US News & World Report, Kaiser News, etc.

Additional Members
Mallory

Mallory

Ron

Ron

Antoinette

Antoinette

Rose

Rose

Shamekka

John

John

Marshay

Marshay

Mark

Mark

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...

Hear from Workgroup Members Themselves

A few of the Consumer Voices Workgroup members shared their personal experiences with accessing, sharing, and using their health records.

Consumer Voices Workgroup Presentation

The Consumer Voices Workgroup recently presented at The Sequoia Project’s 2022 Annual Meeting. During the presentation, the panel discusses patient and caregiver experiences trying to access health data. The goal of the presentation was to shine a spotlight on patient and caregiver stories to spur decision-makers to overcome these urgent challenges starting in 2023.

Download Presentation

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