Standard Personal Health Record (Jira-PSS 2125)

Project Name
Standard Personal Health Record (Jira-PSS 2125)

Project Number
1804

Project Type

Product Family

Products
FHIR Implementation Guide

Project Intent
Create New Standard

Ballot Type

Project Need

This project intends to produce an implementation guide with resources for creating and exchanging personal health records using FHIR.

The technologies referred to collectively as 'digital health' are disrupting the status quo of healthcare and well-being, in this country and beyond. The COVID-19 pandemic drove a surge in use of digital health, in the process yielding data and potential lessons regarding its delivery, impact, value, and sustainability.

The pandemic may yield a transformation that positively affects individuals, families, and communities. The alternative - simply layering digital technologies on top of the current system - will not merely maintain the status quo. It will worsen conditions for those who are already behind in terms of connectivity, digital literacy, and access to care, and will further open the door to abuse, fraud, and waste. That result, in a nation of such wealth and innovative capacity, is unacceptable.

The nation needs to act strategically to realize a vision of improved health and well-being, with full consideration of the distinctive challenges and opportunities that digital health presents. The strategy outlined here, comprising six goals and recommended actions, offers a framework for guiding the development of the U.S. digital health ecosystem.

To read more, see the MITRE National Strategy for Digital Health.

[https://www.mitre.org/publications/technical-papers/a-national-strategy-for-digital-health

Which defines core objectives for standardizing personal health data and providing individuals with Ownership of the Data Relating to Their Health.

To read more, please also see the Patient Contributed Data Whitepaper

https://docs.google.com/document/d/1_6Pshw51nrGbw_frxKiS_x-j1QbD8lCHxc_FmAKehdE/edit#heading=h.r52ffzsiq2n5

Objectives and Deliverables
FHIR IG - R1 - STU: Target 2024 Jan Ballot Cycle

Project Document Repository
https://github.com/Open-Health-Manager/standard-patient-health-record-ig PSS: https://jira.hl7.org/browse/PSS-2125?src=confmacro

Collaboration Efforts

Dependencies
Project may possibly end up requiring the following external tools: Synthea - Synthetic data generation. Inferno - Data validation, quality control, and conformance testing.

Stakeholders
Standards Development Organizations (SDOs), Other (specify in Misc. Notes below),N/A

Implementers
MITRE GoInvo (Tentative) OtisHealth (Tentative) Epic (Tentative)

External Drivers
1950s - 2000 Primary health care has struggled for decades, with certain challenges around patient care, that are a result of electronic medical system architectures. As described in 'Implementing High-Quality Primary Care (Consensus Study Report), practitioners gain by having up to date information, from outside the hospital environment. 2016 21st Century Cures introduced new laws mandating patient rights to access their own health information, and regulatory penalties for information blocking, which has gone into effect in Y22Q4. 2019 CARES Act accelerated the adoption of telehealth services, which in many cases is reliant on patient collected data, since the patient is not in the clinic for a clinician to collect the data. CARES Act has also allocated $1B to the Community Services Block Grant, and in conjunction with the ONC’s Consumer-eHealth pledge community, there has been the #GetMyHealthData initiative targeted at health equity outcomes. 2021 In response, MITRE corporation drafted the do

Common Names
Standard Patient Health Record, Standard Personal Health Record, Secure Personal Health Record, PHR, SPHR, Standard PHR, PHR-S, Personal Health Environment, Generic Patient Health Record, GPHR, Standard Patient Health Repository

Lineage

External Vocabularies
N/A

Backwards Compatibility
N/A

Joint Copyright
No