Patients Consent to Physicians Crowdsourcing for Diagnosis

Alicia Ault

May 01, 2015

The increasing number of apps and online services that allow physicians to use crowdsourcing to make a diagnosis highlights the need for a debate on how to allow for patient privacy and consent, according to results from a new survey.

We were interested in better understanding how patients in primary care offices think about social media and how it can be used for their health, said James Colbert, MD, from Newton–Wellesley Hospital in Massachusetts, who is web editor for JAMA Internal Medicine.

Physicians can currently upload case reports or standalone images with tools such as HealthTap, Figure 1, and Sermo, and clinicians from around the world can give comments, tips, and suggestions. It opens up the universe beyond case conferences, scientific meetings, medical journals, and hallway consults — and can potentially return results quickly.

However, the fact that physicians are using these services — with or without their patients' knowledge — raises some ethical issues. De-identified patient information is not regulated by HIPAA, although some healthcare organizations do require patient consent before images are shared.

Attitudes About Information Sharing

Dr Colbert and his colleagues conducted a cross-sectional survey of patients at four outpatient primary care clinics to assess patient attitudes about information sharing and preferences for consent. Dr Colbert presented the survey results at the Society of General Internal Medicine 2015 Annual Meeting in Toronto.

The four clinics studied were at Brigham and Women's Hospital in Boston; George Washington University Hospital and the VA Medical Center in Washington, DC; and the University of California, San Francisco.

Of the 491 English-speaking survey respondents, 41% were women, 80% were at least 35 years of age, 18% were 18 to 34 years, 62% had at least some college education, and 41% were white, 32% were black, 10% were Hispanic, and 8% were Asian.

Although there is no law requiring you to get permission from a patient, common courtesy requires that you at least ask.

Health was self-reported as good, very good, or excellent by 70% of respondents. In terms of social media, 71% reported daily or almost daily use, and 34% reported having posted information about their health.

The following scenario was presented to survey respondents: "Let's say you have a worrisome rash on your back and your doctor would like to post a picture of just your back (no one could tell it was you) on a public website that's mainly viewed by physicians and scientists."

When asked whether they would give permission to have their picture posted online, about 80% of respondents agreed to posting to improve their own medical care, about 80% agreed to posting to educate other doctors, and about 80% agreed to posting to advance scientific knowledge.

When asked about consent, 43% of respondents preferred to give verbal consent, 26% preferred written consent, and 31% said no consent was needed.

On multivariate regression analysis, white people and people who had previously posted information about their health were more likely to agree to have their personal information crowdsourced, Dr Colbert reported.

Respondents older that 65 years were significantly more likely than younger respondents to say that no permission was needed to post their health information (odds ratio, 4.5; P < .01).

This study points to the need for a debate on how to allow for patient privacy and consent without impeding the flow of clinical information, said Dr Colbert.

Consent Policies Needed

"Although there is no law requiring you to get permission from a patient, I would say that common courtesy requires that you at least ask" before posting even de-identified information, he explained.

At his hospital, written consent is required before clinicians share images. That may or may not be the exception; too little is known about how other institutions and physician offices are dealing with this issue, he said.

There should be a consent process for sharing patient information online, said Matthew DeCamp, MD, from the Johns Hopkins Berman Institute of Bioethics and the Johns Hopkins Division of General Internal Medicine in Baltimore. However, "the exact type of process — written, verbal, or otherwise — should depend on the use in question."

Certain sensitive subjects or photos might require written consent, whereas less sensitive ones might require only oral consent, Dr DeCamp told Medscape Medical News. Patients also need to be educated on just how widely their information might be shared, he added.

Dr DeCamp and Dr Colbert said they agree that colleague-to-colleague interactions can be useful for physicians and patients — whether they happen over the Internet, at medical conferences, or through other sources.

"I would want to be sure that patients understand that these media can be shared much more widely than medical textbooks or journal articles. That could be important to some patients, and even affect their willingness to share," Dr DeCamp explained.

"There may even be a special benefit for patients in rural or geographically isolated areas, if these applications can, for example, increase access to specialty knowledge or care," he said.

Technology does have limits, though. Physicians need to see the whole patient to make an accurate diagnosis. "Plus, there are the concerns about privacy and confidentiality in the increasingly networked, big data world," said Dr DeCamp.

Dr Colbert and Dr DeCamp have disclosed no relevant financial relationships.

Society of General Internal Medicine (SGIM) 2015 Annual Meeting: Abstract 2196426. Presented April 23, 2015.


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