Support Funding for Development of Consumer-Controlled Personal Health Record Systems

  • by: Lisa Nelson
  • recipient: Organizations that fund health information technology projects through

Over the past decade, the Office of the National Coordinator (ONC) has led the charge to improve health outcomes in the US by developing a health information technology (HIT) ecosystem where electronic health information is appropriately and readily available to empower consumers, support clinical decision-making, inform population and public health, shift reimbursement toward value based payment, and advance science. As a result, the US has experienced remarkable progress in the digitization of the healthcare experience.

Problem: the grant funding process fueling this innovation is not sufficiently focused on developing the type of HIT system that would be used by consumers. The focus up to now has been on the types of electronic health record (EHR) systems used by clinicians that provide care, organizations that help health information to be exchanged (HIEs), and organizations that support quality, research, and public health. Consumer-controlled EHR systems, called personal health record (PHR) systems, are the missing piece in the HIT ecosystem puzzle. If we aim to achieve HHS Secretary Sylvia Burwell’s vision for better care through smarter spending and a nation of healthier people, more funding is needed for consumer-controlled PHRs.

In the recently published report titled, Connecting Health and Care for the Nation: a 10-Year Vision to Achieve an Interoperable Health IT Infrastucture1, the ONC challenges the private and public sector to take action to advance our country toward an interoperable HIT ecosystem over the next ten years. Consumers need to be part of this advancement. Thus we need systems that consumers can use to track and manage their own health information as they strive to take a more active role in becoming healthier people.

How you can help: Everyone needs to choose a critical action they are willing to commit to, or take the lead on. Please sign this petition to do your part to encourage more funding for innovation that will support consumer stakeholders in the use of interoperable HIT systems.


This petition was started August 21, 2016 to show ONC and other organizations funding HIT innovation in healthcare that more support for consumer-contolled EHR technology is needed.  

Individuals who have signed this petition also believe more needs to be done to engage consumer stakeholders by encouraging the development of information systems that empower consumer engagement in their health and care. 

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