The national non-profit has created a Consumer Voices Workgroup to gain information on how consumers access and share their health information, and the challenges they face in doing so.
The Sequoia Project is adding the consumer's voice to the effort to establish a nationwide health information exchange.
The non-profit group this announced the formation of a Consumer Voices Workgroup, designed to gather input from consumers on barriers they face accessing and sharing health information. The work done by this group will help in the development of a Consumer Engagement Strategy Workgroup, which will be formed later this year to develop specific strategies for consumer engagement, access, usability, education, and policy.
“Collectively, the groundwork for health IT interoperability mandated by federal policy and laid by industry innovators can be leveraged by consumers,” Mariann Yeager, The Sequoia Project's CEO, said in a press release. “To realize the promise of consumers actively accessing and using their own information, we must understand their perspectives and the human experience, and the struggles they face in trying to access information they need to care for themselves and loved ones.”
“It is important to have consumer representatives communicate their experiences, needs, and insights to inform what industry can do to make it easier for everyone to access, use, and share their own health data,” said Shannah Koss, executive vice president of community development for Livepact and a co-chair of the group with Grace Cordovano, PhD, BCPA, founder of Enlightening Results. “Our workgroup members and the people they care for have truly heartbreaking experiences—ones that could have been avoided if they had better electronic access to their records and if health information exchange was more broadly and consistently used for patients.”
“Requesting medical records brings everyone dealing with a catastrophic diagnosis to their knees, and it shouldn’t be this complicated,” added Cordovano. “The administrative burden placed on patients and their care partners and caregivers to access, use, and share their health records must be addressed.”
The workgroup is made up of a diverse set of consumers, with half reported more than 11 healthcare visits per year and almost 90% acting as caregivers.
Eric Wicklund is the associate content manager and senior editor for Innovation, Technology, Telehealth, Supply Chain and Pharma for HealthLeaders.
The Sequoia Project wants to add consumer input to the discussion on creating a nationwide health information exchange.
The new workgroup will be discussing how consumers access and share their health information, as well as the barriers they face in getting and using that data.
That work will help in the development of a Consumer Engagement Strategy Workgroup later this year, which will offer recommendations and guidelines on how to address consumer engagement, access, usability, education, and policy.