A FasterCures PCORI-Funded Project

Background

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Many patients and caregivers have experienced the frustration and confusion associated with requesting and collecting medical records. A New York Times columnist set out on a 72 Hour quest to gather his medical records and covered the many steps and organizations he had to interface with in his short journey. For patients or caregivers with chronic conditions, rare diseases, or complex medical histories, this experience can be even more difficult, especially when accessing old records are essential for making decisions in a moment of crisis.

In our background research for this project, we identified a number of campaigns that encourage patients to obtain and donate their health data. Other entities have created open source educational tools that address specific aspects of patient health data, including the following:

 
 
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Get my Health Data

The “Get My Health Data” campaign sponsored by the National Partnerships for Women & Families is a recent example. These campaigns have variable information about what data is being sought, what value it has, and how it can meaningfully be put to use.


What happens to health information

This video, What happens to health information? designed by Jodyn Platt of the University of Michigan, provides a brief broad overview of health information collected within hospital settings and how patient information is shared with and stored by entities such as health departments and researchers.

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Patient's interaction with the Healthcare system

Healthcare Information and Management Systems Society (HIMSS) created an online journey of a patient’s interaction with the healthcare system. Scroll through the site to view the journey of a patient who falls and injures her knee and the website visually displays the various steps along her journey with the healthcare system.


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HEalth IT Videos and resources

HealthIT.gov from the Office of the National Coordinator (ONC), houses a series of informational videos and other resources for patients and families regarding access to their electronically captured health information. ONC also recently released a series of informational videos aimed at helping patients understand their rights regarding accessing and sharing their individual health information under HIPAA.


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the data map

Designed by a Harvard University team, theDataMap™ is an online portal for documenting flows of personal data. It tells you where your data goes. The goal is to produce a detailed description of personal data flows in the United States, but it. The effort started with health data and is expanding to all other kinds of personal data.