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Blood Tests – Who Owns The Data?

Blood TestAfter you have a blood sample drawn and sent to a laboratory for analysis, who owns  the results? Medscape and WebMD collaborated on a survey to determine how physicians and patients viewed questions about the use of mHealth and the ownership and access to EHRs and laboratory and imaging test results. The study was unique in that it asked exactly the same questions to two very different audiences. The Medscape survey went to physicians and other health providers via an email invitation and 1,406 responded. The WebMD consumer survey was obtained from 1,102 random WebMD site visitors where all site visitors had an equal probability of answering the survey.

The opening question in the survey asked whether technology, such as smart phones and add-on devices, should be used by patients to assist in the diagnostic process. 84% of patients said yes, while 69% of physicians said yes. When asked whether patients should be allowed to self diagnose without provider input, only 17% of physicians said yes. Approximately 67% of patients and physicians thought smart phones should be used for routine blood tests. This does not bode well for hospital laboratory revenues. Most patients thought smartphones could replace office visits for checking of heart rate and rhythm, skin problems, and eye and ear exams. Doctors agreed heart rate and rhythm could be measured with smartphones but were much more skeptical on the other tests.

More than 95% of both physicians and patients believe patients should have access to their EHRs, but when it comes to the rights of patients to see all of the notes taken by their physicians during an office visit, 89% of patients agreed they should be able to see the notes compared to 64% of physicians. When asked the question of whether doctors should share only the notes they deem appropriate, just 11% of patients said yes and 36% of physicians said yes.

Who owns medical records? More than half of patients said they owned them while 38% of physicians claimed ownership. I was surprised just 34% of patients and 15% of physicians believe they should be given immediate access to lab results. 75% of physicians and 58% of patients said doctors should review results before patients are given access in case a discussion is needed.

The U.S. Department of Health and Human Services (HHS) published new rules in early 2014 to give patients the ownership of data collected from blood work and imaging studies. HHS then Secretary Kathleen Sebelius believed patients should be informed partners with their healthcare providers. “The right to access personal health information is a cornerstone of the HIPAA privacy rule,” she said. “Information like lab results can empower patients to track their health progress, make decisions with their health care professionals, and adhere to important treatment plans.” The new rule gives patients or a person designated by the patient a means of direct access to the patient’s completed laboratory test reports.

A new rule amends the Clinical Laboratory Improvement Amendments of 1988 to allow laboratories to give a patient or a person designated by the patient, access to the patient’s completed test reports. While patients can continue to get access to their laboratory test reports from their doctors, these changes give patients a new option to obtain their test reports directly from the laboratory while maintaining strong protections for patients’ privacy. Quest Diagnostics and other laboratories can automatically release results, with patient agreement, directly into smartphone apps, patient portals, and EHRs.

Unfortunately, the rule has a provision that the patient or the personal representative may have to “put their request in writing and pay for the cost of copying, mailing, or electronic media on which the information is provided, such as a CD or flash drive.” In most cases, copies must be given to the patient within 30 days of his or her request. This is not exactly real-time. As consumers learn they own the data, they will make increasing demands to get it electronically and immediately.