Why we are backing HealthDataRights on patient access to test results

At PKB we are working with the Association of Clinical Biochemistry to provide test results directly to patients with long-term illnesses. This is important for patients to manage their health care, and useful to clinicians who need patients to understand their own health. Back in 2008 the NHS formally recognized the importance of such access in Lord Darzi’s High Quality Care for All report, which promised that patients would have access to their records through NHS HealthSpace.

HealthDataRightsThe very wonderful HealthDataRights.org is asking US law makers to allow patients similar access. Although Federal regulations state that each patient has the right to access his or her medical records, the HIPAA Privacy Rule treats test results as a special case, separate from other protected health information. CMS has issued regulations that further state that results can only be delivered to “Authorized Persons”, which as it is currently defined does not include the patient who is the subject of the test.

HealthDataRights has written a letter asking to remove this exception. Here are its two recommendations:

  1. Remove subsection (a)(iii)(A) from 45 C.F.R. § 164.524. This change eliminates the disparate treatment of lab test results compared to other protected health information under HIPAA.
  2. Change 42 C.F.R. 493.1291(f) to the following:  “Test results must be released only to (a) authorized persons, (b) if applicable, the individual responsible for using the test results and the laboratory that initially requested the test, and (c) upon request, the test subject.”  This change clarifies that individuals can receive their results upon request.

PKB is proud to be one of the organizations supporting these changes. You too can voice your support on their blog, or by e-mailing the HealthDataRights team on action@healthdatarights.org with your name and institution.

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