Giving Voice to Patients

The Walking Gallery and Social Media

The other night I sat alone in my home office correcting some errors in a piece about my work. I am sure the reporter on the story thought she used the right word to describe The Walking Gallery. She called it a foundation. Now if by her word choice she meant a sturdy platform upon which greatness would be built, I would have no concerns. But I think chose foundation as a term describing a non-profit entity or a charitable trust.

 The Walking Gallery of Health Care is not a foundation, organization or corporation. It does not have a physical address or a board of directors. It is a concept. It is a patient-centric movement within healthcare and is as ephemeral as the media that supports it.

 

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The Walking Gallery: Advocating for Patients through Art and Social Media

 

The Walking Gallery closely resembles a flash mob in that it is organized on social media. The doctors, patients, nurses and other allied professionals who are members of this movement attend medical conferences with paintings on their backs. Those paintings describe patient stories both good and bad. Those stories change the tenor of policy conversations throughout the world.

The Walking Gallery does not have a website. The movement is spread through Twitter a hashtag, a Facebook group, blogs and LinkedIn posts. Every member of the Walking Gallery is required to tell their story, wear their jacket publicly and spread the word through social media.

 At this point ,we have 296 members of The Walking Gallery forming a mighty web of advocacy.

Some of you may not have embraced the full potential of social within you health advocacy. I counsel that you should. Social media has become the great equalizer that has given the individual patient or family caregiver the same leverage in policy conversations once reserved for foundations.

 

 If You Have a Cause You Must Be on Twitter

128px-Twitterlogo Twitter is a concept-based platform.  In Twitter, we use hastags: #hcsm (healthcare social media) or #ptsafety(patient safety) to follow concepts or chat sessions.  This is usually done in a very public way and most accounts are open.  The stream of comments can be searched through Google and those who tweet should know that their writing could be seen by anyone.  On Twitter you can follow people who do not follow you back.  You can comment to them directly by posting in the public stream.  If you wish to say something privately, you can send them a direct message if they can follow you back.  Direct messages are like short private emails between two people.

 Twitter is also an excellent communication platform if you are considering a crowdfunding campaign to fund your advocacy goals.

 

 Facebook: Not Just Friends and Family

facebook-icon_128pixFacebook is a wonderful tool for finding people.  This platform is more closed.  I have never been able to find a Facebook comment during a Google search, though I can find the person and their interests. In Facebook, you can communicate by including a friend’s name within your post and it will appear publically on your wall as well as their own.  This is a good tool if you know this person well and know the message is very much inline with their life and mission.  If you think it might not reflect their worldview ,it is not considered appropriate to post it on their wall. If you wish to say something privately a Facebook message is used.  A message can be between two or more individuals but is not a public form of communication.  Facebook also can promote posts for a fee if you have created a page. This can be a very useful tool if you are trying to find like-minded individuals.

 

Blogging Tells the Whole Story

 Your blog is your voice.  The blog is an amazing tool.  Here you can explain your stance in patient advocacy in great detail.  Unlike a website, it is rarely static and very easy to update.  You can post links to your blog on both Twitter and Facebook.  A lot of misunderstanding occurs online when you do not have the space to explain yourself in full.  A blog can give you the time and space to be clear and if you enable comments you will get questions directly. 

 The Walking Gallery is not a foundation. In 2014, you do not need to be an organization or foundation to help change the world. You need to use your voice to share the story and that is best done through social media.

 

Editor’s note: You can follow Regina and news of The Walking Gallery on her blog http://reginaholliday.blogspot.com/  and, of course, on Facebook and Twitter.

 

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Regina Holliday Regina Holliday is a Maryland-based patient rights arts advocate. Regina began painting a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. After his death resulting from kidney cancer on June 17, 2009, she began painting a mural entitled “73 cents." It depicts the Holliday family’s journey through the medical system. This painting became part of the national healthcare debate and was covered by news sources such as ABC, CBS, BBC and peer-reviewed journals such as the BMJ. Regina also paints on canvas at medical conferences throughout the U.S. She paints the concepts discussed and presents them through a patient’s view. In addition, she began a health advocacy movement called “The Walking Gallery.” The Gallery consists of a loose confederation of artists, medical providers, technicians and advocates who wear patient-centered care paintings on the backs of business suits.

Regina Holliday has 1 post(s) at EngagingPatients.org

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