ProPublica, the same organization who brought us “Dollars for Docs” and the “Surgeon Scorecard,” is once again making a foray into the medical transparency world. This time, they focus on the Health Insurance Portability and Accountability Act (HIPAA), and provide information on whether “your hospital, clinic, pharmacy or health insurer has been named in patient privacy complaints, breaches or violations.”
In creating this “HIPAA Helper,” ProPublica sifted through data provided by the U.S. Department of Health and Human Services Office for Civil Rights (HIPAA’s enforcer), the California Department of Public Health, and the U.S. Department of Veterans Affairs.
How Does it Work?
Patients and the general public can go to the HIPAA Helper and search for providers and hospitals in the search box. Once the search is completed, a list of results will be displayed. A brief explanation of the issue and any outcome will be included in the results list. One can click on the date and get a more “in depth” look, which explains which database ProPublica found the complaint logged in, as well as how many “other reports” cite the alleged violation.
Many news outlets around the country have already taken the liberty of looking up their local hospitals and care facilities and reporting on “privacy violations” that have allegedly taken place at those hospitals and care facilities. According to the website major HIPAA violators included the Veterans Administration, CVS, Walgreens, Walmart, and Kaiser Permanente.
Concerns
While we are wary of the HIPAA Helper and the reliability of the data included, our concern does not stop there. We have previously written about the Surgeon Scorecard possibly being used by the American Board of Orthopaedic Surgery for assessing competency in surgeon recertification. Fears that this HIPAA information could also be used for similar purposes are looming, front and center.
However, equally as concerning, as previously alluded to, is the concern that the data is not reliable. Unreliable data has been proven to dissuade patients from seeing certain doctors and using certain hospitals. The possibility that the information found within the HIPAA Helper is not completely accurate and may lead to similar situations in the future is a major concern.
ProPublica has already proven that their information is not always fully reliable and accurate. As we previously wrote, Rand Corp. took issue with the methodology and accuracy of the Surgeon Scorecard by ProPublica. Rand considered the issues with methodology alone to be “so serious that patients should not view the Scorecard as ‘a valid or reliable predictor of the health outcomes any individual surgeon is likely to provide.'”
The information found in the HIPAA Helper is so broad and will likely prove to not be very helpful to patients. One example, from the U.S. Department of Veterans Affairs, involves a “reported breach of medical information” that was also cited in “336 other reports.” The only description of the issue is “Unauthorized Access/Disclosure Involving Paper/Films.”
Another problem is a mere complaint versus an actual violation will get you on the list. This could eventually serve as a vehicle for intimidating health systems or pharmacy chains by simply increasing the number of complaints.
Not only is the information overbroad, but in some cases, it isn’t even there. A search of “Quest Diagnostics,” for example, comes up with 59 results, but the top results are full of issues where the “data [is] not available.” It is questionable what good such a result will do for patients, as there is absolutely no information on the alleged violation, not even an overbroad one.
Conclusion
It does not seem as though ProPublica offers a “legend” of any sort to help aid in patient understanding, nor does ProPublica make an attempt to explain what the aforementioned “Unauthorized Access/Disclosure Involving Paper/Films” problem, or any of the other cited problems, mean. The lack of clear information and explanations may very well wind up being a curse to patients and the medical professionals that aim to serve them.