Despite advances in modern digital health technologies, few patients know what to ask for or what information should be available to them, and not nearly enough health care organizations are equipped to meet their requests.

To tackle that problem, a group of patient advocates are launching 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: to 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 in which consumer access to data is the rule, rather than the exception.

“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. “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.”

The Get My Health Data Campaign is coordinated by the National Partnership for Women & Families. Founders include Amida Technology Solutions; Code for America; Genetic Alliance; Health Data Consortium; Farzad Mostashari, MD, ScM; and Aneesh Chopra, former Chief Technology Officer of the United States.

Additional 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 GetMyHealthData.org.