WASHINGTON, DC (December 16, 2013) – Patient Privacy Rights’ (PPR) founder and chair, Deborah C. Peel, MD, submitted written testimony to the U.S. Department of Health and Human Services’ Office of the National Coordinator (ONC) at today’s Patient Matching Stakeholder Meeting. The meeting discussed the initial findings from the ONC’s dedicated initiative to assess which aspects of patient identification matching are working well, where there are gaps, and where improvements are needed.
In her prepared testimony, Dr. Peel said that “the Initial Findings address the problems caused by current institutional health information technology (health IT) systems and data exchanges.” However, she also stated that the findings may not adequately address future needs, nor do they foresee how the meaningful use requirements for the Health Information Technology for Clinical Health (HITECH) Act can resolve many of the current problems with patient identity and patient matching.
Arguing that the findings present a tremendous opportunity to create and leverage genuine patient engagement, Dr. Peel said that “patients have more interest and stake in data integrity and safety than any other stakeholder.” Describing PPR’s vision of the future, Dr. Peel outlined how meaningful patient engagement will eliminate many of the complex problems caused by current patient identity systems, matching technologies, and algorithms. She also said that meaningful patient engagement means that patients can access, control, or delegate how their personal information is used and disclosed, as well as monitor all exchanges of their health data in real time.
Additionally, Dr. Peel discussed key elements for meaningful patient engagement based on Fair Information Practices (FIPs) and federal law. She said that all data holders and all health data aggregators should operate as HIPAA covered entities and should be known to patients. In order to provide accountability and transparency, she said that each data aggregator should provide Notice of Privacy Practices (NPPs), voluntary patient-controlled IDs, patient and physician portals, Direct Secure email between patients and physicians Blue Button Plus (BB+), and real time accounting of disclosures.
In her concluding remarks, Dr. Peel stated that polices and best practices should consider how future health IT systems and data exchanges will operate, and should “anticipate meaningful patient and physician engagement, lowering costs, improving data quality, integrity and patient safety.” She urged the ONC to require, promote, and incentivize the rapid adoption of technologies that meaningfully engage patients as described in her testimony.
The complete text of this testimony is here.