Personal Health Records

Technology, Privacy and Security

While PHRs vary, one main difference separates most: whether they are freestanding like FollowMe or tethered like Aetna's. That difference can have an impact on privacy and security, the amount of work needed to maintain a PHR, and even the technology required.

Freestanding PHRs typically require consumers to type, scan or download their medical records. Lupfer keys in essential parts of his grandson's records and downloads scans from the boy's providers. "It's simple," he says. "It's easy to work with."

PHRs tethered to a sponsoring health plan, doctor or employer are preloaded for the individual, reducing the workload to start and maintain them. But the information loaded for consumers is usually based not on medical records but on claims or billing data, which can be prone to error.

Tethered PHRs also limit the data entered, typically to the length of time the person has been with a health plan or received care from a certain provider. Freestanding PHRs, however, are portable, allowing people permanent access. Aetna has partnered with Microsoft's HealthVault so its members can make their PHR portable and access HealthVault tools to monitor weight, blood pressure, cholesterol — and even find a clinical trial.

In today's plug-and-play world, consumers often don't need more than an account, a computer or mobile device — increasingly PHRs are introducing versions for the mobile Web—and Internet access to get instant access to a PHR. PHRs commonly let users print out portions of their medical records to share.

If your PHR is Web-based, as most are, your records are stored on the PHR sponsor's server. "We are more secure than a financial institution," says Aetna's Greden. However, your personal information can still be at risk.

"There are two separate risk scenarios," says Pam Dixon, executive director of the World Privacy Forum. "For medical information held by hospitals and doctors, the risk is that insiders will peek and potentially sell the data." For all online health care records, "the second-biggest risk is that the data will inadvertently leak due to a security lapse," Dixon says. "We see many more cases of leaks due to negligence than intentional hacking."

Dixon suggests opting for a PHR covered by the federal Health Insurance Portability and Accountability Act (HIPAA), the same law giving patients rights to their medical records. Covered entities are regulated in handling patients' medical data. Without HIPAA protection, she says, consumers can lose "many key legal protections," such as doctor-patient confidentiality. According to Dixon, Google Health, HealthVault and WebMD PHRs are not HIPAA-covered.

Tips on Using a PHR

• Read the terms of service and the privacy policy very carefully before storing your data. Some non-HIPAA-covered PHRs market your data.
• Make sure your PHR allows you the right to delete your record.
• If you're using a wireless connection, be sure it's encrypted (look for a small lock symbol in the upper right-hand corner of the screen).
• Keep a printed copy of your PHR in case the records get deleted or altered.
• Double-check the information on your PHR to make sure it is accurate and up-to-date.