Short Description

Patients on FHIR: Bring Your Own Health Record

Long Description

Patient Empowerment invites participants to export a health record from their personal health record or electronic medical record of choice, and join us for a session of review, discussion, and exchange.  Inspired by the Physicians on FHIR sessions (historically held on Fridays of working group meetings), we want to give patients, patient advocates, and PHR/EHR vendors an opportunity to meet and exchange records. 

In particular, we will be looking at longitudinal records, and how a patient's health history may be spread over multiple systems, with focus on things like how different systems bundle and export files, patient ID formats, code systems and value sets in use, loading records into other systems, deduplication, record reconciliation, and so forth.  

Protected Health Information is not required to participate.  Nor is programming experience required.  We will accept sandbox and application data in any format (PDF, XML, JSON, FAX, JPEG, etc), although our long-term focus will be on mapping pathways to FHIR based formats.  


Gather Data for an Implementation Guide

Related Tracks?

Bulk Data, Patient Track, FHIR At Scale Taskforce

Call for participants

  • Patients who use any sort of digital record keeping for their health conditions.
  • Patient advocates representing communities of patients with specific niche concerns.
  • Personal Health Record (PHR) vendors who have developed software for tracking personal health.
  • Electronic Medical Record (PHR) vendors who have obligations under 21st Century Cures Act to provide data to patients.  
  • Application and medical device vendors who develop software that may export health history for a patient.

Track Prerequisites

Scenario 1. A system or application that exports or generates a health record via an API interface.  
Scenario 2. A system or application that imports a health record (via API or arbitrary file access).  

We are keeping prerequisites to a minimum for this initial connectathon, with no expectations that participants will need to do any custom coding or development work.  For this initial session, we invite participants to export a health record of their choice from a sandbox or application they are responsible for, using any API of their choice. 

Does not need to be production data or identifiable personal health information.  Doesn't even need to be FHIR, per se...  if someone wishes to export a Facebook profile, or a favored health tracking app that exports in a proprietary format, we are interested in getting a sample of that record. Sandbox data, test patients, anonymized data, and proprietary data will all be acceptable for the initial market/environment survey.   

We do ask that participants allow a copy of any record submitted to be kept by the Patient Empowerment workgroup, as we will be using it as a dataset and analyzing it during subsequent meetings.  As such, we will likely be asking a consent form be filled out for any records that contain personally identifiable information (PII).

For those who have implemented FHIR based Argonaut or Bulk Data specifications, we expect common API patterns to include:

GET {fhirBase}/Patient/{patientId}/$everything
GET {fhirBase}/Patient/{patientId}/$export
GET {fhirBase}/Patient/$export?patientId={patientId}
GET {fhirBase}/Patient/{patientId}/$everything?_outputFormat=ndjson
GET {fhirBase}/Patient/{patientId}/$export?_outputFormat=ndjson
GET {fhirBase}/Patient/$export?patientId={patientId}&_outputFormat=ndjson

Track Lead(s)

Abigail Watson

Track Lead Email(s)

Specification Information

Draft Implementation Guide: 

Zulip stream

Track Kick off Call

Thursday, December 22nd, 2022 (Tentative)
Thursday, January 5th, 2023 (Tentative)

Specification Information

System Roles

Testing Scenario:

Scenario 1. Export a health record.
The most basic testing scenario for this connectathon track is whether your system or application can export a health record.  Particular attention will be given to records exported in FHIR format, which satisfy 21st Century Cures Act requirements. 

Scenario 2. Import a health record.
Interested parties may wish to go an additional step further, and attempt to import records that were exported by other systems.  Systems that include both import/export functionality typically include some sort of File > Save As and File > Open functionality, although that is not strictly required.  Vendors and developers with PHRs, EHRs, or applications that can import health records are highly encouraged to reach out.  

Testing Utilities

Patient Empowerment and MITRE Corporation will provide two testing utilities during the month of January for analyzing FHIR based health records that are exported and provided by participants.  

Testing Utility 1 - Longitudinal Timeline Viewer

Testing Utility 2 - SPHR Record Analyzer