"These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings," said the study's senior author, Lucila Ohno-Machado, MD, PhD, professor of medicine, associate dean for informatics and technology in the UC San Diego School of Medicine and chair of the Department of Biomedical Informatics at UC San Diego Health. "When sample sizes are small, it is unclear whether the research findings generalize to a larger population. Additionally, in alignment with the concept of personalized medicine, it is important to see whether it is possible to personalize privacy settings for sharing clinical data."

Generally speaking, the current state of affairs concerning the sharing of "anonymized" patient health data for secondary research is uneven and unsettled. It has been shown that anonymization methods -- in which data sets are either encrypted or stripped of personally identifiable information -- are not 100 percent effective. Since 2013, newly enrolled patients are required to proactively consent to sharing their personal health information for research studies or future secondary use. In California, a patient's specific permission is required to share mental health, substance abuse, HIV status and genetic information, but other items or conditions are not specified. In many states, there is no requirement for a patient's specific permission on these types of items before they can be shared. Today, for practical purposes, patients have the option to decline any part of their medical record be used for research. They cannot indicate what types of research or researcher should be able to obtain their records.

Almost three-quarters of respondents -- 67.1 percent -- said they would be willing to share all items with researchers from their health care institutions; almost one-quarter said they would be willing to share all items with all interested researchers, a finding the authors said was reassuring and could help in the planning of studies based on EHRs and biospecimens that would be expected to be broadly shared.

Equally encouraging: Less than 4 percent of participants said they were not willing to share any information with anyone.

Ohno-Machado said the way in which preferences are elicited also has an influence. There was greater sharing per item when respondents were asked to opt-out than when they were asked to opt-in. Whether the form had details about the items or used broad categories did not have an influence on sharing.

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