This project intends to produce an implementation guide with resources and guidance for creating and exchanging personal health records using FHIR.  This project is broadly focused  on operationalizing and improving personal health records (PHR) that patients carry with them.   The technologies referred to collectively as “digital health” are disrupting the status quo of healthcare and well-being. The COVID-19 pandemic drove a surge in use of digital health, yielding data and lessons regarding its delivery, impact, value, and sustainability.  And while we hope the pandemic is ultimately remembered as yielding transformations that positively affected individuals, families, and communities, that remains to be seen. The alternative — simply layering digital technologies on top of the current system — will 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 is unacceptable. National and international stakeholders 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 by MITRE, comprising six goals and recommended actions, offers a framework for guiding the development of digital health ecosystems. To read more, see the MITRE National Strategy for Digital Health. https://www.mitre.org/publications/technical-papers/a-national-strategy-for-digital-health Core objectives include Standardizing Personal Health Data and providing individuals with Ownership of the Data Relating to Their Health.  Additionally, we now see efforts in some countries, such as the Netherlands, to introduce national personal health record apps and supporting infrastructure. https://www.mobihealthnews.com/news/emea/personal-health-records-europe-national-or-beyond And European Union efforts to standardize personal health applications via Label2Enable: https://label2enable.eu/#:~:text=Label2Enable%20is%20an%20EU%2Dfunded,ISO%2FTS%2082304%2D2! To these ends, the Patient Empowerment workgroup has published a Patient Contributed Data Whitepaper which provides details on how personal health records, patient managed data, and patient collected data may contribute to a patient's health and participate in health/medical ecosystems.  https://docs.google.com/document/d/1_6Pshw51nrGbw_frxKiS_x-j1QbD8lCHxc_FmAKehdE/edit#heading=h.r52ffzsiq2n5 Using these documents as a starting point, this project seeks to operationalize these concepts around patient data ownership, and improve the state of personal health records by providing implementation guidance.  This guidance may come in the form of example patient records, recommended file formats, mapping algorithms, references to prior art, and similar functionality.   To the greatest extent possible, we intend to develop guidance that is international in scope, and able to facilitate cross-border interoperability, as patients travel and collect health records from multiple jurisdictions and store them in personal data repositories.  This may include recommendations on how to reconcile variations in international language support, medical terminologies, patient summaries, and the like.

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 document “A National Strategy for Digital Health” (Whitepaper, 40pg) for the US government, which highlights the need for patient owned data. https://www.mitre.org/publications/technical-papers/a-national-strategy-for-digital-health 2023 - 2025 Lastly, federal stakeholders such as Medicare, Medicaid, the Centers for Disease Control, have needs for interoperabile patient data, which is currently bottlenecked and constrained by the USCDI review cycle is a current bottleneck and constraint. Alternative avenues are needed to help accelerate USCDI development over the next 3 years. 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

Patients EHR, PHR Health Care IT Equipment Vendors Emergency Services Quality Reporting Agencies Clinical Decision Support Systems Health Information Exchanges Local and State Departments of Health Healthcare Institutions (hospitals, long term care, home care, mental health) Courts and Legal Representatives Clinical Research Patient Advocacy Communities