Study Reveals Consumer Support Of (But Wariness Around) Health Data Sharing
By Megan Williams, contributing writer
Healthcare delivery systems centered on technology and information sharing (ACO’s, learning health systems, HIEs, etc.) have given rise to an entirely new suite of questions when it comes to data and patient comfort. The Journal Of The American Medical Informatics Association recently released results of a study focused on examining “consumer views on privacy, security, and consent in electronic data sharing for healthcare and research together.”
Findings
Overall, respondents were concerned that health information exchanges (HIEs) are a threat to security and privacy, with 42.5 percent believing security will suffer and 40.3 percent claiming the same about privacy.
Overall, as has been previously reported by Business Solutions, consumers are in favor of electronic data sharing (and believe it should be free and simple) but are also concerned about elements of transparency including:
- who has access
- the purpose of data use
- individual control
Respondents were found to be more open to sharing deidentified information for research purposes (76.2 percent) than sharing identified information for healthcare (57.3 percent). Additionally, the survey found that 50.8 percent of respondents strongly or somewhat agreed that societal benefit was more important than privacy.
A Focus On California
The study focused on health information systems in California, because the state has a “particularly active health information organization landscape (HIO).” It has 16 community and 14 enterprise HIOs focused on exchange within an integrated delivery network (IDN). The state’s actions around HIOs have highlighted issues that have not yet had a chance to arise in other parts of the country. To address these, it has kicked off efforts like The California Privacy And Security Advisory Board, a public-private collaboration organized by the California Health and Human Services Agency’s Office of Health Information Integrity (CalOHII) in 2007.
The Questions
To gain deeper insight, the study laid out three primary research questions. They were:
- “What is public opinion in California regarding privacy and security of electronic HIE?”
- “What is public opinion in California regarding privacy and security of electronic health data sharing for research?”
- “Are there differences in views about, and the likelihood of consenting to, electronic health data sharing for healthcare and for research purposes?”
The questions were administered through a Computer Assisted Telephone Interviewing software application between January 22, and February 23, 2013 to a random sampling of 38,854 California area code phone numbers. Responses from 800 adult California residents were obtained.