HIPAA, Medical Case Reports, and Unbalanced Benefit in News Reporting
On January 12, 2010, a magnitude 7.0 earthquake rocked the island country of Haiti, destroying much of the capital Port Au Prince and leading to the deaths of as many as 200,000 people. Since this time, thousands of images of the resulting carnage have been published in both traditional media and on internet sites.
Recently there has been some discussion about the appropriateness of some of these images, particularly those that depict individual humans in despair or even in death. Some have argued that such images should not be published without the express consent of the person depicted, or with the consent of the next-of-kin in cases of the dead. Media, for the most part, has held that in cases of extreme human events the benefit of publicizing the truth outweighs whatever emotional harm might come to an individual through publication of their plight. They argue that the many outweigh the few, in this case.
I have thought a great deal about this issue, both as it applies to the recent images in Haiti and to my own efforts at publication. In this thinking I have formed the idea of unbalanced benefit in news reporting. The point of news reporting is to explain to the world what is going on. Ultimately this benefits the world, but may actually be of harm to the individual being reported on, though breach of confidentiality or publicizing of personal anguish. Part of the issue is that sometimes a picture means something different to the person in the picture than it does to the stranger that views it. If the world looks at a pile of dead bodies recovered from a collapsed building in Haiti, they see the situation that has occurred, and the overall effect it has had on the people and environment. But if the mother of a dead woman in that pile of bodies sees the picture, its a whole different story. That mother doesn’t see the overall situation, she sees her daughter, and knows that the world sees her too. And so while the world may actually benefit from seeing that picture, and in turn Haiti may benefit from the attention it creates, the mother may suffer emotional distress because of it. All without her consent. Most media outlets feel that in situations like Haiti, consent is not required, if for any reason than it would be completely impractical. To some this is hypocritical, as we certainly hold media to a higher standard when filming in the United States, hence the frequent blurred faces we see in some news broadcasts when consent for filming was denied or was not available.
So what about cases where an image is “nearly” anonymous? The above example is one of these situations, where to nearly everyone in the world it is an image of random carnage, but to a select few it is an image of an individual person. Is that image truly de-identified? Does de-identified mean the same as unidentifiable?
I have been asking myself these questions a lot, as it relates to the publication of medical cases. Recently I published several images from medical cases I was involved with, and all of these images have gotten significant traffic on the blog. One in fact was immediately stolen and republished without consent or appropriate attribution on a Romanian OB/GYN blog, which I found concerning.
Before I published these images I thought a lot about whether or not it was a confidentiality issue. Clearly none of them are identifiable to the world in general, but that doesn’t mean that they weren’t identifiable to the individual in the image. That bothered me a bit, so I asked around to a lot of colleagues, who all seem to agree that de-identified images are kosher to publish. After all, pictures of interesting medical conditions are often taken in surgery, under the permission provided in most routine surgical consent forms. Some of these pictures go on to be published in medical journals, all without any additional consent process taking place. Furthermore, there are lots of websites that aggregate medical cases and publish de-identified pictures, and Google images is full of medical pictures. Sermo is full of case reports with de-identified photos, which in some ways is different since everybody looking at the pictures is a physician.
It was always my intention that Academic OB/GYN would be a blog that would be trafficked mostly by OB/GYN physicians. As the blog has developed, I have found that the traffic is far more mixed between physicians, other medical professionals, and laypeople. So does this matter? Is the implied de-identified publication right different when the audience that will look at the picture are not all doctors? From a legal point of view, the answer is no. In fact, HIPAA is pretty clear about what can be published and what cannot.
HIPAA specifies 18 elements that cannot be published without express patient consent:
2. All geographical subdivisions smaller than a State, including street address, city, county, precinct, zip code, and their equivalent geocodes, except for the initial three digits of a zip code, if according to the current publicly available data from the Bureau of the Census: (1) The geographic unit formed by combining all zip codes with the same three initial digits contains more than 20,000 people; and (2) The initial three digits of a zip code for all such geographic units containing 20,000 or fewer people is changed to 000.
3. All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, date of death; and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older;
4. Phone numbers;
5. Fax numbers;
6. Electronic mail addresses;
7. Social Security numbers;
8. Medical record numbers;
9. Health plan beneficiary numbers;
10. Account numbers;
11. Certificate/license numbers;
12. Vehicle identifiers and serial numbers, including license plate numbers;
13. Device identifiers and serial numbers;
14. Web Universal Resource Locators (URLs);
15. Internet Protocol (IP) address numbers;
16. Biometric identifiers, including finger and voice prints;
17. Full face photographic images and any comparable images; and
Any other unique identifying number, characteristic, or code (note this does not mean the unique code assigned by the investigator to code the data)
As such, the publication of a de-identified medical image along with general comments about the case, whether on the internet or in print, is a HIPAA compliant activity, and therefore should be kosher. But still I am bothered by a few things. HIPAA states that you can’t publish a patient’s zip code. So does this also mean that there cannot be an implied zip code? In my case, many people know who I am and where I work, so if I publish a case there is certainly an implied zip code, which may or may not be correct. Certainly most cases I publish can be reasonably assumed to be my county or one of the adjacent counties. The same could be said for many case reports in journals, as they do list their city of origin. Does this matter? I’m not sure.
As I think about this, I realize that its not so different than the Haiti pictures. To me and to my readers, a medical image is a picture of a condition, not of a specific person. But in some cases, there is someone out there that might look at that picture and see a picture of themselves, and that bothers me. It may not be illegal or HIPAA non-compliant, but it still seems wrong without explicit consent to publish a specific image.
It really comes down to this – if I were to ask a patient if they minded if I published a particular de-identified picture of them on a educational website and they said that they did mind, would I still want to have published it? My answer is an emphatic NO. If my patient saw a picture on the web that they realized was them, I would want them to feel happy that they are helping to educate someone, not upset that something was seen that they would have preferred be kept private, even if no one ever knew it was them. I am not comfortable with the idea of unbalanced benefit when it comes to my blog.
As such, I’ve decided to change my photo policy. As of now, I have taken down any picture that I believe an individual patient might be able to identify as a picture of themselves. Furthermore, I will seek explicit written consent to republish these images, and will do the same prior to publishing any potentially self-identifiable case images in the future. This will be a pain in the butt, but I think it is ultimately the right thing to do. I challenge other medical bloggers to meet the same standards, which I think are ultimately just and reasonable for our patients.