Wednesday, April 2, 2008

Personal Health Records

There has been recent attention in the media given to the development of commercial personal health record software packages. Russell McGowan has prepared a summary of some issues raised by these developments which may be of interest to other HCCA members as we look at developing a position on the development of electronic health records and/or other e-health issues in the ACT.

In a rapidly changing environment, the failure of Health Connect to make much of an impact on the establishment of a shared electronic health record for the benefit of consumers in Australia has been disappointing, but there are alternative approaches emerging that warrant closer inspection.

I have drawn the following inferences from recent articles I have read on the marketing of software packages offering us software to assist with compiling our own personal health records which may be populated electronically (at least in part) by records compiled by clinicians:

  • Several major software companies are currently peddling Personal Health Record (PHR) products, including Google and Microsoft. On the surface, these provide an interesting approach to an opt in patient controlled EHR system.
  • If one is nervous about giving health information to a PHR provider, an alternative is to maintain one's own records. There are software tools that one can use on one's own computer to help keep records organized, or one can store files in other formats, such as paper or on discs.
  • One has the right to obtain a copy of one's health records from one's health care providers and health insurers, and this is something that is generally a good idea. Placing this into a PHR can help provide safer and better quality co-ordinated care.

However, there are some potential drawbacks:

  • The pressure to make a profit can place commercial PHRs in conflict with consumers over privacy
  • Use of a PHR by a consumer on an office computer or other employer-owned Internet access device may also affect the privileged status of health information.
  • Not all PHRs have the same levels of privacy protection. Some PHRs are covered under the US federal Health Insurance Portability and Accountability Act. (HIPAA), but many are not. Australia doesn't seem to have any equivalent to the HIPAA. that establishes a baseline for health privacy here

The HIPAA rules establish minimum privacy and security standards for covered entities. A covered entity is a health care provider, health insurer, or clearinghouse. Records in PHRs that are covered under HIPAA have built-in standards for privacy and security, including standards governing disclosure, access, correction, and other privacy elements. The basic idea is that if a health care provider (hospital, physician, pharmacist, etc.) or a health plan maintains a health care record, the record is protected under HIPAA. Maybe we need such an Act here as well.

In my view healthcare consumers in Australia need to become more proactive in developing options for different groups within the community who want to be more in control of health information about their health status to ensure that they continue to get the best quality care available without removing the right to privacy of community members who are less concerned about this and more concerned about leakage of information about their health status that may negatively impact on them in some way. Activist healthcare consumers with complex chronic conditions are at one end of the spectrum, and privacy and human rights activists at the other. Allowing the needs of either group to totally over-ride those of the other is not acceptable, so some form of compromise approach needs to be developed if the vast majority of members of the Australian community are to benefit.

I vote for trialling an opt-in PHR in Australia and empowering a representative steering group of consumers, clinicians and health system adminstrators to monitor its application.

Russell McGowan

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