Social Media for the Sick: Doctors, Patients, and me…oh my!

While ingesting what I would later learn to be a “dangerous” amount of medicated cough drops, my first blog post became suddenly clear…

It was Tuesday night when after having had a terrible fever and sore throat, odd red bump like blisters began showing up on my hands and feet. Alarmed and concerned, I did what any normal person would do in this age. I googled “red bumps on hands”.  I clicked on one of the first links and to my utter shock (and partial relief), one user described with the utmost precision the EXACT SAME symptoms as mine…

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Had it not been for this user to alert me that I likely had Hand Foot Mouth Disease, I would have had to once again endure the two hour long wait in the infirmary to be diagnosed with this childish virus (seriously–most all cases are in children under 10).

Despite the serious calamity that this virus has brought into my life the last week, what has been wonderful is the plethora of information on the web about this virus. I was able to see what the blisters looked like, what to expect, and how long it would last thanks to medical websites and social media users who shared their own experiences (how fun!).

Spoiler Alert: There is no cure

Spoiler Alert: There is no treatment

Social media it would seem is an entirely beneficial revolution to happen within the healthcare industry. Before concluding this though, let’s look at the good and the bad of social media within the medical community.

The Good: Social media helps connect people with similar experiences/complications.

It can reduce doctor visits if there is no treatment (as it did in my case), while also helping doctors interact and communicate about illnesses or diseases they need more information about before treating. One example of this that has been in the recent news is an app called Figure 1. Essentially it is Instagram for doctors and uses crowdsourcing to diagnose mystery cases. Launched in 2013, the app has been downloaded by roughly 20% of medical residents and in one recent case, it helped to quickly diagnose a 13 month old’s strange rash thanks to another physician’s knowledge and expertise.

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Another way in which social media has been involved in the medical field is through community sites for patients and supporters. Online sites like CaringBridge bring patients and loved ones together in a community platform with individualized sites for each patient. Designed to share and update supporters of the patient’s medical state, CaringBridge also allows supporters to offer words of encouragement and hope, creating a community that is accessible 24/7.

Screen Shot 2014-09-22 at 10.58.02 AMOther sites such as Doximity are specific to the medical community, much like Figure 1. With 250,000 members, it represents 40% of all doctors within the U.S. and is currently the largest online medical network. On the site physicians can connect with others and collaborate on patient treatment in one to one messages or through discussion forums.

The Bad: Privacy Issues and the Dangers of Self Diagnosis

Whenever you google something that is wrong with you, the worst always seems to pop up. As my paranoid roommate summed up before I undertook my Google search on Tuesday, “Don’t google that it’s going to tell you that you have cancer or something like that.” To her credit, anything and everything is almost always a symptom of some rare life threatening disease. As such, it is easy to get ahead of yourself and completely misdiagnose yourself or as the infographic below references become a “cyberchondriac”. The dangers of self diagnosis can also go the other way in that you may completely underestimate a pain or illness you have because some social media user or website chalked it up to nothing.

And as always with social media comes the issue of privacy. 10% of Figure 1 users are not doctors at all, though only doctors can comment on the photos and offer their advice. Figure 1’s approach to privacy is that the doctors are required to ask permission and no identifying details can be on camera, however should other users be allowed on the app?  Furthermore, there have been instances of doctors and nurses using social media to inappropriately share photos and information about patients.

Conclusion

In my opinion I think the good outweighs the bad. With 1/3 of health care professionals on a social media site specific to their industry already, I’m curious to see how social media will continue to evolve within the medical community—whether it will become a guiding force or a tool left under utilized to its fullest potential due to liability and privacy issues. What are your thoughts?

Also for the record, I no longer have Hand Foot Mouth disease….Life is good.

8 comments

  1. I had a similar experience sophomore year with sleep paralysis (your brain wakes up before your body and you temporarily lose the ability to move). I was convinced I suffered a short-lived coma but a quick Wikipedia search (and confirmation from my nursing-student roommates) assured me it was nothing more than disrupted REM-sleep. It’s fascinating that the Internet can offer reassurances so quickly. On the other hand, when I tweeted about my experience with sleep paralysis I was shocked by the relative information shared on the platform. There was some seriously incriminating advice! There’s definitely a double-edged sword to accepting information from the Internet (especially when it comes to casually diagnosing comas). Thanks for sharing/exploring this topic!

  2. I’m going to have to bookmark this post just for all of the helpful websites that you noted, for whenever I inevitably get sick on campus! I also am quite happy with your introduction of the term “cyberchondriac” into my life. Definitely going to pull that on the next person I hear complaining about whatever WebMD did (or didn’t) tell them.

    I have never even thought about doctor’s invading my privacy, since most of the time it is their job to understand ALL of your body. I broke the tip of my finger this summer and had multiple doctors take pictures of it with their personal cell phones. They claimed that it was for internal distribution purposes & documentation purposes only, so that other doctors could be informed beforehand of what they could expect when observing/operating on my finger. Do you think that someday these types of apps & websites will eliminate Minute Clinic Diagnoses, making their shot & other services more efficient?

    – Pat

  3. Pat, so interesting about the personal photos your doctors took! I’ve never heard of that practice, but it seems as fair as sharing medical records and x-rays.

    I liked your post, Megan! I was reminded of the story earlier this year of a toddler diagnosed with an eye disease after comments on a Facebook photo (http://time.com/48216/facebook-picture-diagnoses-child-disease/). It was nice to read both the good and the bad aspects you took into consideration.

  4. Nice post. Actually what first got me into social media were the healthcare applications. There are plenty of other negative examples, including a community of paranoid schizophrenics who convince each other that they are not crazy and go off their meds. Also there are pro-anorexia communities where members post the skinniest possible pictures of themselves (see thinspiration). Double-edged sword for sure.

  5. Interesting post Megan! I understand that patients benefit a lot from social media’s involvement in medical fields (I do too!), but here I’m more curious that why those doctors and clinicians spend time to do the consultings online, isn’t it free? and nobody pays for their ‘good’ or ‘bad’ diagnosis? then how do they make money from these social media involvements to balance their invested time and efforts (their opportunity cost?)

  6. Nice post, Megan! Having the same hesitations as your roommate, I have always felt too afraid to pull the trigger on Google searches regarding any questionable systems, not wanting to slip into the cycle of “cyberchondria.” I now have some faith that useful information will be readily available and quickly discoverable the next time I need to research symptoms. And like Pat, I took note of those sites you used as examples so that I can increase my chances of receiving the best medical information in the future. I also found Figure 1 a particularly interesting example of how social media can use its powers for good, as my reflection last week put me in a more negative frame of mind regarding SM.

  7. This is a cool topic, Megan. Mainlyl because I think we’re about to see tech have a significant impact in the field of healthcare. Hospitals are looking for systems that can capture valuable patient data and for platforms to help them run operations. And, as you noted, social can play in important part in this, especially for patients. And I think you raise some valid concerns: privacy is an important part of healthcare, and self-diagnosis can be dangerous. But the positive examples you provided show the potential social media has to really revolutionize the ways patients find out about possible conditions and connect with doctors.

  8. Great post! This is a really interesting intersection of industries to cover. Like you said, my first thought with apps like figure 1 is privacy concerns. Especially in this country, we really value doctor-patient confidentiality. And, I have a few friends who are “cyberchondriacs” themselves. Googling your illness is not always the answer, but I do see a lot of possibility for progression in the future. By using social media in healthcare, perhaps those who cannot always afford a doctors visit can seek better, more accurate care. I’m excited to see what the future holds!

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