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The Role of Social Media in Facilitating Diagnosis

March 23, 2014

This week March 26 at 9 pm ET, Canadian pharmaceutical marketers Dorothy Czylyski, MSc (@DorothyCzylyski) and Peter Janiszewski, PhD (@Dr_Janis) will moderate #hcsmca. Dorothy Czylyski has been working in the Canadian healthcare space for 15 years as a pharmaceutical marketer. Dr Peter Janiszewski is a medical writer and editor, published researcher, science blogger and an advocate of new media in scientific knowledge translation. In this blog post, Dorothy details our topics of discussion.

By Dorothy Czylyski

Dorothy Czylyski

Dorothy Czylyski

Peter Janiszewski

Peter Janiszewski

Eight years ago and 6 weeks before our wedding, my then fiancé was waking up in the middle of the night and drinking entire bottles of water, then going to the bathroom every hour throughout the day and night. He was also losing a lot of weight which we attributed to our recent obsession with the gym in preparation for our beach wedding. Everybody thought he looked great but I was worried. After a couple of days of intermittent research on the internet I advised him to see our family doctor – perhaps he had diabetes?? Lo and behold, the results came back with a diabetes diagnosis; Type 1 at 29 years old. As much as we were in disbelief that he is now living with a chronic disease, I was relieved knowing I had suspected the condition and didn’t wait to uncover it only after he suffered from debilitating pain or finding him on the floor somewhere in a diabetic coma.

In today’s world of social media and easy access to just about any type of information, this week’s #hcsmca chat will explore how social media tools hasten diagnosis and improve access to treatment for patients.

But it doesn’t end there. For patients and caregivers with online access to a plethora of health information, this means a variety of answers to a stable of symptoms. For physicians, it can mean the ability to act quicker and prescribe appropriate treatment. In my case, my fiancé was immediately referred to an endocrinologist and within a couple of days had an armamentarium of insulin, needles, and glucose monitors; along with a nutritionist and nurse that were assigned to his care.

Here is a link to a recent article in that describes the case of a mother whose child was accurately diagnosed with a rare genetic disorder by her Facebook network – How Facebook Is Transforming Science and Public Health.

In cases where patients present with unusual symptoms that are not congruent with a common ailment, physicians now have the option of crowdsourcing a diagnosis for difficult cases. Doctors can reach out to their network of colleagues all over the world through online social media tools, with the hope that someone recognizes the symptoms and can assist in pointing the physician in the right direction of a proper diagnosis. One example is Sermo, an online community for physicians that is open only to licensed MDs in the United States. Physicians can post observations and questions about clinical issues and hear other doctor’s opinions in real-time. There is also Doximity, a network for US healthcare providers that is similar to a master Rolodex where physicians can look up their colleagues and share information with them. Without the availability of such tools in the past, many medical conditions may have taken several years to obtain a correct diagnosis.

Here are some articles that offer insightful reading on the subject:

The pharmaceutical industry has also taken an active interest in facilitating diagnosis, ranging from high cholesterol and glucose levels, to rare and ultra-rare diseases. This is being achieved through social media channels like Facebook, YouTube, as well as websites that offer chat rooms for patients and caregivers. One can argue that this motivation stems from the fact that a particular company has a product available for that condition and identifying patients could mean a prescription, but helping to raise awareness of a specific medical condition is never a bad thing. Pharmaceutical companies are behind many of today’s patient support programs, where patients turn for advice in navigating their treatment as well as obtain assistance with drug reimbursement, they fund support groups and infusion clinics, and offer the support of nurse coordinators. These companies have also become active in the development of companion diagnostics for the diseases that their products help treat.

For the #hcsmca chat on March 26, 2014 at 9PM ET, we will be discussing the following topics exploring the role of social media in facilitating diagnosis:

  • T1: How has social media transformed how patients are being diagnosed?
  • T2: How is social media helping physicians diagnose their patients?
  • T3: How can social media interfere with accurate diagnosis or lead patients astray?

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