Wednesday, July 22, 2015

Social Media is Bridging Gaps, Helping Patients Make Decisions

I get asked, a lot, about why I'm so overly open on a very public blog.  People in my life wonder why I'd share intimate information with the world, with people I know nothing about.  I write candidly about the ups and downs of my recovery, the painful childhood memories of dealing with my mom and cancer and even share personal photos.  My answer?  Because someone out there is going to feel as lost as I did going through this experience, and if I can tell the story in real-time, as I'm going through each step, its bound to help someone.  Social media can be a gift, if used the right way.  It can not only be a tool to get information out to others with like interests or sharing your own personal and professional knowledge, it can be used to help people cope with whatever journey he/she is going through, seeking answers they just can't find in medical journals.

Case and point.  Last night I received the most lovely direct message via Twitter which assured me, for the first time in my seven months of blogging, that I'm doing this for the right reasons.

I don't mind putting myself out there...reality is, we're in the information technology age, and I might as well use it in a productive way, not wasting my time.  I'm only one small drop in the ocean of Twitter.  You'd be amazed to see how many patients are online seeking comfort, advice and knowledge from other patients and physicians.  For someone looking to have their hand held through a journey like mine, implant reconstruction after a BRCA diagnosis, I'm here.  If she is a mother of children wondering how to tell them of her BRCA diagnosis or upcoming surgery, I've written about that.  If they just can't make the decision between implant or DIEP, they can read my take on my surgery and then hop on over to my friend @6state, DIEP extraordinaire.  If she's looking for a closed and private support group, she can seek out @NickiDurlester.  If she wants to know how I chose my surgeon, @mchrysopoulo, and why I'd recommend him to anyone, even my own children, I've explained it plenty.  I'm putting it all out there because someone will have those questions, they will seek them out, and it's not their primary healthcare physician they turn to's the Internet.  But its not just us patients advocating online.

As a result of my recent journey, I've been very fortunate to get involved with some pretty amazing doctors on Twitter; doctors who are putting themselves out in the public eye, hoping to share knowledge with not only other physicians, but patients too.  They are providing a wealth of information regarding breast reconstruction, both from the scientific and the patient points of view.  A bridge is forming, connecting the wide gap between the doctor and patient.  We're all learning from each other, supporting each other and trying to change how medical decisions are made.  We're seeing a more socially responsible healthcare system.  Patients are feeling more supported, heard.  The same patients who read my blog or tweet with me, are also tweeting with these doctors and asking questions.

This movement, gaining momentum over the last couple years, is called Shared Decision Making (#shareddecisionmaking.)  

Shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences.
Doctors being on social media platforms, ranging from Twitter and Facebook to Instagram and Pinterest, are providing patients with many different points of view.  They are sharing research, data, articles, photos, charts, live tweets from conferences...and patients are soaking it up.  We want to be well informed before walking into our own doctor's office.  We want to have a say, ask questions, get opinions.  And the beauty is, doctors are getting it.  They are listening, they are having conversations and they are aware that the person sitting in the chair in front of them might as well be their daughter, mother or wife.  A personal interest in patients is happening.  Doctors are beginning to feel the pulse of patients around the world, via social media.  Patients are getting a lens into the medical world.  It's a win-win. 

I hope that as time goes on, this sharing of knowledge via social platforms gains momentum and trust.  There are skeptics out there, people who feel healthcare discussions don't belong on social media streams, let alone their own doctor.  I'm here to say I disagree.  If you have the right doctor, if you've done your due diligence, you've hopefully found a doctor who understands patient privacy and remains professional online at all times.  The skeptics will hopefully learn to trust this emerging online healthcare system and see all the benefits outweigh the negatives...if any.  If you're ready to join us, we welcome you with open arms.  

Hashtags to follow: #shareddecisionmaking #breastreconstruction #plasticsurgery #brca #SoMe

Twitter users to follow to get you started@mchrysopoulo @diepflapbreast @6state @olivierbranford @danielzliu @lguzzardim @dr_samuellin @brcaresponder  @karenbrcamtl @brcainfo @pisano_dr @chetnastala @droscarochoa

1 comment:

  1. Heather-
    Thank you for continuing to share your #BRCAstory and your thoughts!
    I agree!
    FYI-- new hashtag is #BRCAstory
    Let's get the word out.
    XO Amy


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