In health care today, accessing information online is often a confusing and difficult process. Few patients know what to ask for or what information should be available to them, and many health care organizations are ill-equipped to meet their requests.
To change that, a diverse group of patient advocates has launched the Get My Health Data Campaign to support patients in asking for, getting, and effectively using their digital health data.
The campaign has three goals: give consumers the information and tools they need to ask for and use their digital health data; identify and promote innovative apps and tools that help consumers securely compile, store, and use their health data; and promote a culture of consumer access to data.
“With the Get My Health Data Campaign, we are creating a concerted push from consumers that will liberate digital health information so it gets into the hands of patients and family caregivers, allowing them to more fully engage in their health and care,” said Christine Bechtel, campaign coordinator and advisor to the National Partnership for Women & Families, the group coordinating the effort. “Even though we have the technology and policies in place to support patients in accessing their electronic health information, it’s not happening the way it should. Our goal is to enable patients to more easily get and use their digital health information.”
“Over the past five years, doctors and hospitals have widely adopted electronic health records,” added Farzad Mostashari, former U.S. National Coordinator for Health Information Technology. “We’ve declared July 4th ‘Data Independence Day’ because we believe now is the moment when patient demand for their digital health information can flip health care into the open position. Let’s work together to make it practical for people to ask for, share and use their own health data.”
More information about the new campaign, including information on how to be successful in requesting data, what to request, patients’ rights to data, resources for providers, and more is available at www.GetMyHealthData.org.
“Too often there are gaps between policy intentions and implementation realities for patients and their families,” said Rebecca Coelius, director of health at Code for America. “We’ve seen that this gap also causes challenges in accessing health data. Code for America has collaboratively built the Vocatus tool to be a simple and free way for patients or their proxies to request medical records, capture whether that request was successful and provide a feedback loop to health care institutions, the public and government agencies as part of the Get My Health Data Campaign.”
In addition to Mostashari, the campaign’s founders include Amida Technology Solutions, Code for America, Genetic Alliance, Health Data Consortium, and Aneesh Chopra, former chief technology officer of the United States.
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