The mission of Family Health Data Network dates back to 2012 when the organization started as the Janie Appleseed Network and established the goal of promoting 21st century health literacy skills to bridge the growing knowledge gap for consumers in the healthcare space. The foundation became a 501(c)(3) in 2016 to enable the organization to accept donations to advance the cause and subsidize the cost of technology for consumers needing assistance.

In 2022, the Janie Appleseed Network expanded its efforts to engage consumers in the use of new technologies designed to make it easier for patients to access, organize, and mediate exchange of their health information. 

Recent advances in Health IT standards have created new opportunities for FHDN to enlarge the efforts to educate consumers, offer new types of more consumer-friendly apps, and grow the number of people with the technology skills needed to manage their health records in modern ways.

  • Use of trusted consumer credentials backed by identity proofing and digital certificates that assure trading partners of each party’s true identity and eliminates the need for maintaining a distinct username and password for each patient portal or mobile app.
  • Use of new pdf-enabled data processing tools, like Sprkz, that make it easier to collect, populate, and share information between patients and caregivers, and healthcare practitioners to reduce administrative burden and automate information exchange workflows.
  • Elimination of Fax by the use Direct Secure Messaging (DSM) to securely share information between patients and caregivers, and healthcare practitioners.
  • New message content formats that utilize standards such as HL7 V2, CDA, and FHIR to maximize what apps can do to access and reuse available patient data.

Today, FHDN has a renewed commitment to focus on health IT solutions for families. FHDN continues to be the voice of the patient-consumer in developing health IT standards and a leader in the creation of user stories and technical use cases created to accelerate the development of digital solutions that support the meaningful use of technology by patients and their families.


Better life outcomes through better health outcomes


To provide health information technology education and services to grow 21st century health literacy skills by cultivating adoption of family-centered health data.



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Provide education about the use of health information technology (HIT) to improve care and support wellness

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Advocate for inclusion of patients and families as equal participants within their care teams

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Raise awareness about personal health goals and preferences, and encourage personal choice in selecting care options

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Facilitate access to and awareness of communities supporting consumers to leverage technology to live healthier lives

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Offer technology services that help people increase their health literacy and improve their ability to manage their personal health data (PHD)

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Foster adoption and use of health information technology as a basic life management tool which shifts communication away from fax as the primary means of sharing health data

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Enable families to manage their personal health data and have a say in how it gets used for research and public health initiatives

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Establish a library of stories that illustrate consumer views on meaningful use of PHRs and HIT

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Secure grants and donations to reduce or subsidize the cost of consumer-controlled HIT tools and services

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Create a Community of individuals and organizations who share the FHDN vision and seek to advance the mission of growing 21st Century health literacy for families and their members

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