Data Provenance and Patient-Generated Health Data (PGHD)

RitaT imageRita Torkzadeh, is a Certified Professional in Healthcare Information Management Systems (CPHIMS) with extensive clinical and patient-facing applications knowledge and interoperability expertise.  Her specific involvement with Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) Standards and Interoperability (S&I) Framework Data Provenance initiative, its relevance to patient-generated health data (PGHD), and the shift to empowering individuals to be active participants in their healthcare is the impetus for creating this educational resource.  Rita currently manages the joint ONC/CDC Public Health Immunization Data Exchange project within the Health IT Solutions group at JBS International and is a member of HIMSS and its Patient-Generated Health Data (PGHD) Task Force.

 

In the context of health IT data, provenance refers to evidence and attributes describing the origin of health information as it is captured in a health system. Individuals are increasingly encouraged or inclined to contribute and communicate health data electronically to their providers. Knowing the provenance of this data helps providers recognize, trust, interpret and act upon information they might get from their patients. Meaningful Use Stage 2 includes measures for patients' access and transmission of health data to providers.  In Stage 3, providers may choose to request and receive electronically submitted PGHD from patients willing to submit information. 

Data provenance allows PGHD to be more readily accepted by providers and systems relying on ways to authenticate and integrate information contributed by patients electronically, where the patient is the author of data and the facilitator of data attached to them, or in support of their health. Employing data provenance mechanisms can enable actions taken by the patients to be distinctly identified from information generated by the provider, devices, or other systems. Devices, mobile phones and apps will all play a role in PGHD. Data provenance should include these possibilities. Establishing and implementing data provenance standards could provide ways to capture actions and changes mediated by patients to their record relevant to coordinating and managing care within a collaborative record-sharing context.

Recent efforts contributing to defining and advancing PGHD, data provenance capabilities and standards include:

  • ONC FACA Health IT Standards and Policy Consumer current and past workgroups.
  • S&I Framework Data Provenance Initiative.
  • HL7 Community-Based Collaborative Care and Structured Document Work Groups.
    • HL7 data provenance and privacy support in CCDA.
    • PGHD header work for patient-authored documents.

Patients can play a vital role in improving the quality of information in their medical records and managing their care.  This has been demonstrated in projects where patients given access to information in their EHR are able to provide feedback on erroneous information for subsequent correction. Allowing patients to make their own edits/amendments and corrections would reduce cleanup burden on providers, reduce reluctance/barrier to accept PGHD, and improve quality of information that is exchanged.  Data provenance is essential to advancing patient participation where providers need to know what and when information is patient-generated (or amended). This will become more relevant, if patients are granted the ability to amend information in the provider’s EHR, when patients submit unsolicited health data, or where patients respond to provider requests through structured or semi-structured questionnaires or secure messaging (email). Data provenance can also support meaningful consent when patients are given the tools to selectively share information they might otherwise be reluctant to disclose.

Patients often have many providers, services and family support involved in their care. Each might originate, respond to, alter, or transport data, as authors, as specialists, as advisors or support of care/health. The patient as the common link across his/her healthcare providers and services might be the intermediary when s/he uses a patient-controlled electronic medium (PHR, device) to view, download and transmit data from and in between providers. Where the patient is not the author of the data they move, data provenance demonstrating the originating source and author is important for all participants. Additionally, a “tamper proof seal” attached to data, also allows data to be sent by patients, to providers in an actionable way. The provider can be assured that the data is sound, still attached and not altered from the originating source.

Data provenance will be an important enabler to the movement, sharing and collaborating data movement can bring. For consumers, the combination of PGHD provenance and patient-directed privacy standards can help them to be as effective in their own care and in healthcare in general.

Keywords: 
PGHD, patient engagement, Health IT, provenance