Combining Genomics and Personal Health Data

A majority of healthcare consumers now have access to their personal health records (PHRs) through their providers. According to the Office of the National Coordinator for Health IT, access to one’s personal health information can help that individual better manage their own care. HIPAA, usually the regulation which protects the privacy of medical records, also supports the consumer’s right to access those records. However, providers may have different electronic health records (EHRs) and therefore different PHRs for the same patient. While there are some tools which enable integration of data from multiple providers, those tools are not well known to consumers and the lack of APIs (application programming interfaces) in these products creates a barrier for some. 

 

Then there is patient generated health data from monitoring devices, apps and online questionnaires. Technologies that provide for integration of this data into EHRs are not without expense to the provider, as well asadditional programming costs. Some initial pilot studies have demonstrated this using Apple HealthKit and other proprietary tools. A number of devices and apps present data directly to the consumer on their smart phones in the form of personal dashboards, but without integration with other medical data.

 

To add to this level of complexity, some consumers are taking advantage of direct-to-consumer genetic testing. The Precision Medicine Initiative also encourages consumers to donate their genomic and personal health data to this research initiative, which has been well received by healthcare consumers. But integrating this data is not straightforward. An encouraging sign it the availability of APIs to access genomic data programmatically, although this is in early stages. In order for a consumer to have one repository of health data there are still many hurdles to overcome, but several hopeful signs of future integration are now evident.