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The Sequoia Project is elevating consumer engagement, because the consumer voice matters.
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.
The Interoperability Matters Leadership Council chartered the Consumer Voices Workgroup to work in the following phases:
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:
This group will be open to all members of The Sequoia Project. The goal of the group is to:
Be sure to stay up-to-date by signing up for regular updates involving Interoperability Matters.
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+.

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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.
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.








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.
A few of the Consumer Voices Workgroup members shared their personal experiences with accessing, sharing, and using their health records.
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.
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Interoperability Matters a public-private cooperative solving discrete health information exchange challenges through a variety of workgroups and initiatives. Learn More
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Workgroup organized to help propose and develop strategies to meet consumer healthcare needs.
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