Celebrating life of a patient advocate highlights need for patient access to data

Founder of The Walking Gallery of Healthcare honors friend and a leader who lent her voice to patients who needed to be heard.
The Walking Gallery of Healthcare

Artist, patient advocate and founder ot The Walking Gallery of Healthcare Regina Holliday has painted the backs of more than 470 jackets to date.

One year ago today, August 13, 2016, I was at the maker fair in Accident, Maryland. 3-D printing, children painting, and Lego creations surrounded me. In this maelstrom of creativity, I learned that Jess Jacobs had died. Funny, delightful, caring Jess was gone. 

In the year hence, we dedicated a room in honor of Jess in Salt and Pepper Studios: Home of the Walking Gallery.  People all over the country made donations in her honor.  I placed flowers on our front walk dedicated to her memory.

Yesterday, Jess's sister Lauren Jacobs was able to visit the studio. I was honored to show her Jess’s room. Lauren remarked on how much Jess would have loved the room. I built a large display case full of Jess’s art within the doorway frame to the adjoining bedroom. I think there is a kind of poetry in that. Jess lives on in a doorway between this room and the next.


Another local artist, Ashley Folk, made the header on the case.  She created a plaque that depicts the name “Jess Jacobs” in nails and string. Nails and String: a perfect metaphor. Our Jess endured such pain in her 29 years.  When I think nails, I think of smashed thumbs. I think of the nail that went through my bare foot at 10 years of age while walking. I think of Jesus on the cross. I think of nails and it leads me directly to thoughts of shocking and surprising pain. I look at the name “Jess Jacobs” on this plaque and see so many nails. Each nail could represent a treatment, a hospitalization, or another day of pain. 

But then again, there is the string. This string glued firmly, intertwined around all those nails to create the name “Jess.” For that is what Jess did. She entwined us all. I met Jess on Twitter long before I met her in person.  She was one of the #HIT100 in 2013.  She was a powerful patient leader that represented so many in health information technology without a voice.

This year during the #HIT100 voting in July, Ross Martin said we should nominate Jess. When the list came out Chuck Webster made 3-D printed key fobs for all of the 100 that wanted one.  When my fob arrived, I first let it rest a few moments in #TheWalkingGallery of Lego.  Jess helped make so many of those figures.  Then I gave it to Jess.  I put a key ring on it and placed it in the display case.  It looked a little bit lonely, so I put my husband Fred’s keys on the fob. 

Under the keys and fob, there is a blue rose and a blue button. The blue rose represents the thought that Jess will always be with us. The blue button means we always fight for patient access to data, just like Jess. 

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