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Patient Privacy Rights Extend Beyond U.S. Borders, Ethicists Say

 |  By John Commins  
   February 22, 2011

Most U.S. healthcare providers would never photograph patients and post the pictures on the Internet. Doing so, they understand, would violate patient confidentiality, and would merit substantial fines for breaching the federal Health Insurance Portability and Accountability Act. 

Yet, some U.S. physicians, nurses, medical students, and other providers who volunteer their medical skills in developing nations have posted pictures of their patients on Facebook and other social media Web sites. That doesn't violate HIPAA because it's beyond U.S. borders, but it is a breach of ethics, University of College of Medicine researchers write in a Journal of Medical Internet Research study. The researchers want providers to respect privacy rights for all patients, regardless of where they're treated and where they live. 

"A medical student would not take a picture of a patient in clinic here and post it on Facebook," said Erik Black, an assistant professor of pediatrics with the UF College of Medicine and a lead author of the paper. "But there is a disconnect on these trips. We are not respecting these people as individuals. If we are not going to respect them in the same way we respect patients in the United States, why are we even going?" 

UF researchers examined the Facebook profile pages of 1,023 medical students and residents, finding no breaches of patients' privacy in the United States. However, they found 12 photos of patient care in developing countries.

Every year, students from all health fields work in clinics in medically underserved nations, such as the Dominican Republic, Haiti, and Ecuador. It's a chance to get hands-on experience in a patient-care setting and help people who sometimes travel days for care. 

HIPAA doesn't apply to patients outside of the United States, says Lindsay Thompson, MD, an assistant professor of pediatrics in the College of Medicine, and a lead author of the report. If a nation has privacy laws in place, doctors must follow them when practicing there.  

In addition, Thompson says, doctors are ethically bound to follow the laws of the state or country where they practice. "We in the medical profession have to be held to a different standard. Our actions, however altruistic they are, could have some unintended consequences," Thompson said. 

Ruben Ayala, MD, a primary care physician and medical officer with Operation Smile, which provides corrective facial and oral surgery for children in developing nations, said his organization has strict guidelines for using pictures of its patients. 

"Anything we put on the Web site or anything we put out in mailings or videos, all of that done only after we double- and triple-check that we have permission from the patients or their parents to do so. Not everybody is eager to tell their story," Ayala says. 

"A few years ago we modified our informed consent. In a lot of these countries there isn't a culture of informed consent. These patients, we realized, there is always a chance that because they are poor or don't have access they would think that if they don't say 'yes,' they won't get the surgery. We have to make sure they understand that if they say 'yes' to any pictures that will not increase the changes of their child having surgery, and if they say 'no' that does not decrease the chances of their child having surgery," Ayala says.

Physicians and other medical professionals from the United States who volunteer for Operation Smile must sign a code of conduct that forbids posting pictures of patients. Ayala says that on the rare occasion when they learn that a picture has been posted inappropriate, Operation Smile contacts the healthcare provider and asks them to remove the post. "Most times the reaction will be 'Oh I'm sorry. I didn't realize,'" he says. "I don't know where the disconnect comes from because these are practitioners who would never do this in the United States." 

In many cases, medical students and doctors may not realize the differing patient privacy laws in other countries or that that these laws could be even stricter than those in the U.S. 

"A lot of people consider this an ethical gray area," said Reed Van Deusen, MD, an assistant professor of internal medicine and pediatrics at the University of Pittsburgh, who was not involved with the study. "It is pretty complicated, but I agree with their basic tenet that trainees, and physicians in general, should not be posting pictures of patients, whether they are in this country or not. I think it is going to take a bit of a culture change to get everyone else on the same page." 

Terry Kind, MD, a director of pediatric medical student education at the Children's National Medical Center at George Washington University, in Washington, DC, said medical school faculty must teach students about issues like these, namely by modeling professional behavior themselves. 

"(Social media) is here and not going away," Kind said. "There are opportunities for use, but there is risk. The nature of the widespread dissemination is people forget to have that internal check on professionalism."

U.S. patients who agree to be photographed sign consent forms. Black says even getting consent from patients in developing countries poses an ethical challenge, because patients may feel they have to sign the form to receive medical care. Also, because the Internet is borderless, posting pictures to social networking sites could have repercussions for some patients, particularly if the images were taken in countries where being treated by an American doctor is frowned upon. 

Even posting photos to a "private" page is not really ensuring patient privacy because, in some cases, the person posting the photo could be sharing it with 1,000 "friends," Black said. 

"We are not telling people not to do anything," Black said. "We are telling them to think about it. Use your moral and ethical compass. What if this was your child?"

John Commins is a content specialist and online news editor for HealthLeaders, a Simplify Compliance brand.

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