On Monday, numerous patient advocates, physicians, software groups and health bloggers launched HealthDataRights.org, a Web site that aims to use social media to build support for increasing patient access to electronic health records, the New York Times' "Bits" reports.
The site's organizers hope to inject a focus on consumer-driven health care into policy discussions as the federal government moves closer to releasing standards for EHR certification under the federal economic stimulus package (Lohr, "Bits," New York Times, 6/22).
The group also released a Declaration of Health Data Rights, which states that all patients have the right to obtain "a complete copy of their individual health data, without delay, at minimal or no cost" (Wangsness, Boston Globe, 6/23). The declaration states that individuals have the right to:
- Access their medical information;
- Know the source of each part of their records;
- Obtain a complete copy of their health data; and
- Share their medical information with others.
Adam Bosworth -- founder of the online health startup Keas and former head of Google's health unit -- said HIPAA medical privacy rules do not address issues that could arise with the digitization of medical records.
He said the initiative's organizers plan to issue "badges" to recognize physicians who support the patient data rights principles. He added that the group also aims to draw attention to health care providers who do not allow patients to access their health data ("Bits," New York Times, 6/22).
However, some privacy advocates have expressed hesitation about increasing the accessibility of EHRs.
Lee Tien, senior attorney at the Electronic Frontier Foundation in San Francisco, said patients should be able to obtain their records without compromising data security (Hennigan, Los Angeles Times, 6/23).