Healthcare Social Media - Its Impact on Patients

Since 2005, I've blogged as a healthcare administrator and along the way met some great blogger friends.  John Lynn of Healthcare Scene was one of the very first; because we shared an interest in healthcare social media, or #hcsm,  and the technologies #HITsm behind the various channels.

Many of us also had our patients in mind and envisioned ways that these tools could support them and their family caregivers.  But, naysayers would jump up and say "what about HIPAA".  My response was that my desire to learn more about my condition might be more important than any privacy concerns.

So here I am, a patient for this last year with a rare condition - formerly a healthcare administrator (Chief Operating Officer twice).  It is probably a little past time that I write a post focused on my #hcsm experience - that includes all #digitalhealth and #mhealth health.

1. As most patients do, we start with Dr. Google and I was no exception.  For months I googled my symptoms in an attempt to find a diagnosis that might fit with me.  My neurologist wasn't a big help, so I really only had me to advocate for myself.  Soon I came down to the one that seemed to make the most sense.  It often popped up as an option in my search results - Guillain Barre Syndrome (GBS).   In addition, my virtual second opinions also pointed to this condition and recommended next steps.
   

2.  There is only so much information that "reliable health sources" put out.  Think about it... written by a bunch of healthcare professionals who have probably never lived with a particular condition.  What I wanted to do was ask questions while I waited three months for my appointment.  I was a bit perturbed with my neurologist, so I wasn't going to call him.  Instead, I did what I suggested consumers do all those years -- find trustworthy information on social channels that fit their needs. 
3. My first stop was Facebook.  I joined two support groups for patients and family members impacted by GBS.  Next I searched for bloggers with GBS and a little later I added a third FB support group with more emphasis on exercise.  These were wonderful resources.  I learned there were others like me who never experienced the more severe onset of full paralysis.  I also learned helpful tips and more personalized information on what I might expect.  I was even able to finally ask my questions to an audience of people who shared my experiences.  It was a complete relief and helped me endure my continued delay in obtaining an official diagnosis and treatment.
4. Later, I searched for #guillainbarre on Twitter to see if I was missing any important information or new developments.  Again, I found people like me, helpful YouTube videos and more and more knowledge. Using hashtags really helped me dig through the noise of social media to get to the pearls of wisdom I needed.
5. As I could relax and my fears and anxiety of the unknown subsided, I could turn to finding tools to help me continue living my life in spite of functional limitations and other challenges.  It occurred to me I could start an online store to share knowledge about some of the new and innovative products I was finding.  It would offer one stop shopping for patients like me - and where else would I host this than on my blog.  I would test all items carried and write about the in blog posts explaining why they were chosen.  I'd also share this collection of products to help me with activities of daily living on Pinterest , Twitter, Facebook and Instagram.  This new focus on something I could do while stuck on a sofa all day energized me.  And, who knew, someone might actually make a purchase and maybe this could turn into a new profession when I was no longer so limited in my abilities.
6. Fast forward to today and Facebook and Twitter helped the Chronic Disease Coalition find me.  I was able to teach them about Guillain Barre Syndrome and was invited to become one of their new patient advocates.  It fits in well with my new role of helping those facing a new diagnosis.  While I still seek knowledge, I more often share my knowledge with those just starting on the journey.  I have also found that my 35+ years of professional experience has equipped me with some expertise on navigating the healthcare delivery system - that seems to be appreciated by those who are having challenges or hitting barriers to care.

So yes, #hcsm has an important role in promoting patient engagement and self advocacy.  Today's patients want information to help them make better decisions - both from professionals and other patients.  The videos, infographics and other multimedia also support those patients who have low health literacy... or simply prefer visual and audio learning.