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.