Safeguarding patient-generated health information was discussed at the Alliance for Health Reform August 13th lunch briefing on Capitol Hill. Joy Pritts, JD, Chief Privacy Officer for ONC pointed out that patients need to understand their rights along with privacy and security issues related to their personal health information especially when using today’s mobile technologies.
Deven McGraw, Director of the Health Privacy Project for the Center for Democracy & Technology, reported that one of the major problems in receiving patient-generated data is that HIPAA doesn’t apply to all data collection and exchange. HIPAA applies to the collection, use, and disclosure of data by providers but doesn’t apply when the patient collects, uses, and discloses data.
Pritts mentioned recent studies that have been undertaken related to communicating and protecting patient information. A whitepaper released in April published by RTI for ONC on patient-generated data, discusses technical operations, legal issues, plus cultural, and educational issues. Also, a study conducted by NORC at Geisinger is examining patient access to EMRs and is looking at what types of errors and omissions are found in electronic medical records. This study is due to be released in the first quarter of 2013.
Steve Downs, Chief Technology and Information Officer and Co-Developer of Project HealthDesign part of the Robert Wood Johnson Foundation’s Pioneer Portfolio, discussed how collecting data from mobile devices requires a new vision for patient-generated health data.
Downs explained that Project HealthDesign helps clinicians understand patients’ everyday lives. This is accomplished by receiving information from their patients on their Observations of Daily Life or (ODL) which is very often sent on mobile devices. This can include information received from patients on their moods, sleep, diet, exercise, medication adherence etc. to help providers give feedback to patients. The question is how safe and secure is the data sent from the patient to the provider?
Patricia Flatley Brennan, R.N., PhD and Project HealthDesign National Program Director at the University of Wisconsin-Madison speaking at the HIT Policy Committee Hearing pointed out as available technologies change and evolve over time, many different combinations of technologies will provide for workable solutions. In any event, it is necessary to provide for a safe and stable storage place for patient-generated data. Once a safe storage solution is in place, many apps could run off of the same data.
For more information on the Capitol Hill event, go to www.allhealth.org.