CT5

Purpose

Over time, individuals move, change jobs, change providers, develop health conditions, require new services, etc. We envision a competitive market of Consumer Access Services and networked PHRs that meets the needs of many different populations at various stages of their lives. For the overall health of the emerging industry, consumers should be able to make their personally identifiable information available to any and all applications to best meet their needs.

We recommend that the industry work on standardized permissions and formats for the exporting of data from one Consumer Access Service to another upon consumer request.

Export of Data to the Consumer

Consumer Access Services should provide mechanisms for the consumer to export information from her account in standard formats. The ideal state is that consumers would have a menu of output formats that are both human-usable and machine-readable. As health data subsets become standardized in the EHR and PHR industries, Consumer Access Services should support such standards. Ideally, Consumer Access Services would provide a mechanism for the consumer to export all data in the account in a human-intelligible format into standard software such as a spreadsheet or text file. Print capability is a reasonable minimum requirement. Once the consumer assumes full control of the copies of data (e.g., stores them on his computer hard drive), it is the consumer's sole responsibility to protect them.

Recommended Practice

Consumer Access Services should provide an easy-to-use mechanism for consumers to export information in their accounts for personal use. Such mechanisms should:

• Provide information in human-readable form.
• Include audit trail information for data entries (time-, date-, and source-stamping of each diagnosis, for example). (See CT3: Immutable Audit Trails.)
• Include a printer-friendly format.
• Conform to industry standards for health data subsets as they become available and broadly implemented.
• Enable data to be exported into industry standard software, such as spreadsheets, PDFs, or text files.

Export and Import of Data Among Consumer Access Services and PHRs

The ideal future state is for consumers, according to their changing needs and wishes, to be able to transfer their information from PHR service or application to another PHR service or application. Such electronic interoperability is not a market reality today. However, Consumer Access Services should support interoperable data exchange protocols and data standards as they become available and market-tested.

Recommended Practice

Consumer Access Services should support industry-standard data sets for exchanging patient health information as they become available and broadly implemented. Consumer Access Services should collaborate to create a standard messaging envelope to export and import information upon the consumer's authorization.

In the absence of full data exchange interoperability, Consumer Access Services may provide consumers with storage options for documents gathered from past Consumer Access Services or other Health Data Sources. For example, a consumer could export information from one Consumer Access Service into a standard software format such as PDF and store it on her desktop, then upload those PDF documents into a secure account at a new Consumer Access Service.

(For related recommendations, see CP8: Consumer Obtainment and Control of Information Area 5: Expunging of Information and Area 6: Termination of Account.  See also CT3: Immutable Audit Trails for recommendations on tracking export and import of data.)