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Patients, providers take innovative approach to social media

April 24th, 2014

by Kent Bottles

Although some physicians and hospital leaders utilize social media platforms, many healthcare executives still express considerable skepticism. As a physician who uses various social media services to keep up on industry trends, I'm continually impressed by how innovative healthcare leaders and consumers use these tools in new and imaginative ways.

In late April 2014, Twitter announced it will allow researchers to data mine its archives of hundreds of million tweets to try to discover actionable correlations that can be of clinical utility.

According to the Health Informatics Forum, the following projects are now being conducted:

  • Boston Children's Hospital will explore how tweets can be used for foodborne gastrointestinal diseases
  • The University of Twente in the Netherlands will study early detection of cancer
  • A joint study by the University of California, San Diego and the City University of New York will try to establish the overall happiness of Americans in selected cities


Taking advantage of America's obsession with the March Madness college basketball single-elimination tournament, the physicians at eAJKD, the official blog of the American Journal of Kidney Diseases, invented a month-long game called NephMadness.

They aimed to:

  • Increase nephrology knowledge
  • Bring more people into the kidney disease community
  • Increase interest in nephrology by providers and patients

The teams in NephMadness were comprised of nephrology concepts that were developed and described by content experts. The field was divided into eight regions, each with a physician champion:

  • Toxins: Warren KupinM
  • Hypertension: George Bakris
  • Renal replacement therapy: Glenn Chertow
  • Regeneration: Stuart Shankland
  • Acute kidney injury: Sarah Faubel
  • Electrolytes: Helbert Rondon
  • Kidney stones: David Goldfarb
  • Biologics: Jonathan Hogan

Players signed up to predict which concept would win each match up by filling out their brackets. Editors preselected the winners, and with each winner more medical content was posted to explain why one concept was more important than the other. For example, one game featured the JNC8 blood pressure guidelines versus the KDIGO guideline, with the JNC8 guideline from the National Heart Lung and Blood Institute coming out on top.

NephMadness attracted 260 participants and resulted in numerous discussions on twitter. For the record, the player with the most accurate bracket was Carlos Machado.

Patients and families are also exploring new ways to use social media to cope with serious diseases. For example, University of Texas Linebacker Dalton Santos (@Daltonsantos78) used Twitter to raise more than $30,000 to help pay for his uninsured mother's aortic aneurysm surgery.

Another example of a patient's family using such crowdsourcing techniques raised serious ethical questions. When seven-year-old Josh Hardy suffered viral infections associated with his weakened immune system, Chimerix refused to allow his doctors to use their unapproved anti-viral drug brincidofovir. About 20,000 people signed an online petition and Washington Redskins quarterback Robert Griffin III tweeted to his 1.12 million followers under the hash tag #savejosh. The child eventually received the drug.

The Josh Hardy case sparked a spirited debate on social media. One person commented, "It's really not fair to the thousands of others that were turned down just because they didn't make a big public outcry."

Arthur Caplan, director of medical ethics at New York University's Langone Medical Center, summarized the situation by saying, "You couldn't get a more troubling and impossible-to-resolve moral dilemma than this one. It's a trade-off between the public good versus self-interest."

It looks like social media is here to stay, and its applications by providers and patients will be many and innovative. It also appears there are both benefits and unintended consequences, which will challenge all of us to rethink our ethics, curriculum, policies and laws.

Kent Bottles, M.D, is a lecturer at the Thomas Jefferson University School of Population Health and chief medical officer of PYA Analytics.


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