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Entries in The Walking Gallery (2)

Sunday
Apr262015

HIStalking Patient Advocate "LA Lupus Lady" goes to #HIMSS15 in Chicago.

When I first heard about the opportunity to attend the 2015 HIMSS conference in Chicago a HIStalkking Patient Advocate on Regina Holliday's blog, I knew I had to appy even if I didn't earn one of the coveted "Patient Advocate" scholarships.  I wanted to be a part of the incredible opportunity that invited patients to be a part of the largest Health IT conference of the year.  I was thrilled when I found out that I was going to be one of five Patient Advocates selected by Regina Holliday and the HIS talk team.

"LA Lupus Lady" in The Windy City of Chicago at HIMSS15.

After weeks of planning and preparations, taking a trip when you managge a chronic illness is more than packing your suitcase, it involves strategy and planning for all contingencies.  Traveling to Chicago, checking in to the hotel and adjusting to Chicago time, for most people that is the extent of travel stress. For me, the seemingly endess walk to the departure gate and retrieving my luggage was a virtual marathon.  Yet my adrenalin and excitement pushed me with a sense of excitement, I made it to the shuttle and arrived McCormick Place with eagerness and anticipation.

There was a small "registration situation" but soon I found myself meeting Colin Hung (@Colin_Hung of #hcldr) for the first time.  I love meeting my friends from Social Media in real life and had been looking forward to hugging Colin at HIMSS.  Thankfully Colin had access to an extra HIMSS pass and shared his access with me.      

imagine walking the streets of a major US city where there were banners welcoming HIMSS 2015 conference attendees.  This is how Chicago, welcomed me and the othre 40,000 attendees.  

strolling the streeets of Chicago was one thing but walking the aisles of booths within the exhibit hall of HIMSS was incredibly empowering.  I was filled with joy and inspiration with every step.  The colorful signage and well-appointed booths were on abundant display as Colin helped me wield the magnificent madness and lead the way to the HIStalk booth to check-in with Regina and the HiStalk team.

Regina Holliday & Colin Hung show off their "The Walking Gallery" jackets in the HIStalk booth at HIMSS15.

Soon, I was on my own aand wandered through the exhibition hall, meeting executives and representatives for the largest Health IT companies as well as the next big thing and meeting the teams behind the start-ups who strive to create the next big paradigm shift in Information Technology.  After a fabulous first day of HIMSS adventures, it was time to celebrate at the HIStalkapalooza party held at Chicago's famous "House of Blues" where I was proud to participate in judging the HIStalk "best dressed" and "best shoes" contest.  In case, you don't know this about me, let me share that I love it when my "passions collide" and being a Patient Advocate with a new Karen Kane dress on at the HiStalk HIMSS party was a real collision of my passions for Health Actiism, fun and fashion.


HIStalkapalooza 2015 Selfie taken upon arrival at the Chicago "House of Blues" 

The reason why attending HIMSS was such a pleasure for me is that HIMSS is a "global, cause-based, not-for-profit organization focused on better health through Information Technology."  As a Healthcare Activist, I was happy to be healty enough to attend the conference and absolutely thrilled to be able to engage and connect with the stakeholders involved with developing the next generation of healthcare devices, apps and more importantly I was able to be seen and heard as a Patient Advocate.

Patient Advocate "engaged" with Jan & Jack at HIMSS!

On Tuesday morning, Jan Oldenburg. of the HIMSS Connected Patient Initiative shared the value and impact of engaging with patients at the Digital Health Meetup.  This meetup was one of the most empowering sessions of HIMSS15.  I was already teary from Jan's passion for the community and retelling of Regina Holliday's story "73 cents" when she asked if anyone was a member of "The Walking Gallery" and wearing their jacket.  Of course, I was.  I stood up and "modeled' my jacket.  Soon, after Jan mentioned tthat WEGO Health CEO Jack (@healthyjack) Barrette was in the crowd.  I was overwhelmed by inspiration and had to talk with Jan about how I could continue my passion for the Connected Patient Initiative and community after the conference was over.

"Connected Patient" Learning Gallery exhibit at HIMSS.

Imagine the future of healthcare where patients and doctors are able to share EMRs/EHRs with immediate access and are able to create a system of Meaningful Use.  (No Meaningful Use "MU" without me.)  At the HIMSS conference, the future is not some far off and distant place but "the future is now."

In addition, to attending HIMSS as a Patient Advocate, I was interviewed for #TalkHITwithCTG.  Thank you to CTG Health Solutions for being a sponsor of the HIStalking Patient Advocates HIMSS registration passes. CTG Health Solutions was generous and extended their extra passes to HIMSS to HIStalk and that is how the HIStalk Patient Advocates were able to gain admission to HIMSS. (Thank You!)  

Headlining the HIMSS conference was former POTUS George W. Bush.  He was surprisingly jovial and recalled his memories of days during his Presidential adminisration.  I enjoyed his family stories of how his parents and family have taught him the value of family, trust and love.  Though attendees were told not to take pictures during his keynote presentation, as a Patient Advocate I was also told to be gently and openly "disruptive" so I enjoyed the challenge of sneaking pcitures of 43 during the Q and A.

Former President George W. Bush giving the keynote at HIMSS15! Wowing the crowd.

Immediately after the Presidential Keynote, it was time for the HIMSS Block Party a celebration of the community and regional HIMSS chapters representatives were there to encourage a real sense of community.  It was at the HIMSS Block Party where Regina and the HIMSS attendees who are members of 'The Walking Gallery" gathered for a photo op and hugs.  On my way, out of the party I luckily met the California HIMSS chapter representatives and as luck would have it.  I won the Block Party prize of California wine and treats.  The HIMSS community made me smile even more (on the last day after the conference) than I thought possible.

The next day, I spent more than a few hours napping and recouping from the conference but I "forced myself: to get out and explore the city.  In addition, to visiting the famous Bean sculpture I went to Tribune Plaza for a special "photo op" with my favorite football team's helmet, despite being in Chicago I had to pose with the New York Jets helmet, a part of the city's preparation for the NFL Draft. 

Passions collide in Chicago... #LHandSign in the New York Jets helmet in front of the Chicago Tribune. Raising Lupus Awareness in the city after HIMSS15 wrapped.

It was an honor and pleasure to join the HIMSS community.  I feel so lucky to have had the opportunity to participate as a HIStalk Patient Advocate.  I will never be able to show my deep gratitude and appreciation to everyone who made my journey to Chicago such a wonderful adventure.  Lorre, Jennifer and of course the entire HIS talk team, I am so grateful.  How can I begin to thank Regina Holliday for creating the environment where patients are included?  I am proud to share my adventures in Chicago and hope that this post was able to give you a glimpse into my HIMSS journey.  Patient advocacy is my path and I feel that my trip to Chicago was a delightful turning point in empowering me to "level up' my activism and share my enthusiasm for advocacy.  In case, you're wondering... Yes, I am still smiling.

Monday
Oct012012

Nothing is impossible.

The power of social media can be used for good and Regina Holliday @ReginaHolliday creator of The Walking Gallery decided about 4 months ago that she was going to create a Partnership With Patients Summit to be held in Kansas City, Missouri.  When I first heard about the Health Care Social Media "power-houses" attending I was interested by there was no way that I could afford to travel to the conference at this time.  I am still paying off the credit card from my trips to NYC for Lupus Advocacy.  That's when Tiffany @TiffanyAndLupus Peterson told me to apply for a scholarship... and I did.  Regina Holliday Patient Travel Scholarship call to action.. http://reginaholliday.blogspot.com/2012/08/calling-all-patient-advocates.html

Nothing is impossible. (Believe this and it will change your life.)  I waited until almost the last day to apply, I wrote about why I wanted to go in the post "Take Me to the Summit"  http://lalupuslady.squarespace.com/home/2012/8/30/partnership-with-patients-take-me-to-the-summit.html I got a scholarship and this is the post about what happened in Kansas City... because sharing is caring.

Regina worked hard and perfected the conference schedule to make every minute count.  From the Friday night gathering of The Walking Gallery where most everyone wore their patient /advocate story on their hand painted jackets.  Regina is an artist and has transformed the patient voice by making it a work of art.  It would be impossible to articulate Regina's story here, so I am including a lot of links to connect you directly to her.

http://reginaholliday.blogspot.com/2012/09/partnership-with-patients.html

                       

This is Regina's own "Walking Gallery" jacket.

This is Tiffany's "Walking Gallery" jacket painted by Regina.

This is a Lego of the East Coast members of #TheWalkingGallery community.

Regina hasn't finished  my jacket yet, so I proudly wore this one.  Regina is incredibly talented.

The next day was the Partnership with Patients Summit known by the hashtag #cinderblocks I felt lucky to be there so I wanted to show how much I love the Summit with a kiss of the "cinderblock"  

The agenda was jam packed with informative and dynamic speakers.  The opening remarks from Regina started the day with passion.  Then Dave @ePatientDave deBronkart of the Society for Participatory Medicine spoke with Michael Millenson.  Next were the 4x4 presentations from conference sponsors, I really liked @IntouchSol 's presentation and @BunnyEllerin are connecting physicians and Health Care Providers communicate with one another.  Then @Pocket_Health and @Cerner presented.

I attended the morning sessions with Pat @PMastors Mastors on the Partnership with/for Patients and the Patient Speakers and SpeakerLink Panel with @ePatientDave, Kait @Kaitbr B Roe where the inspiration flowed like the Missouri River --where the Riverfront Conference is located along.

After a quick lunch it was time to head over to the @Cerner Experience Theater where we learned what it was like to be a patient "Cerner Style" a network that connects the health care providers using a technology network and improving the current health care system.

After the Cerner Experience, I found a quiet corner of the lounge and took a #LupusStyle nap to reboot before the afternoon sessions.  Then came the session I was really looking forward to Lisa Field's aka @PracticalWisdom "Power Points that Snap, Crackle and Pop!" Of course, I had already submitted my slides for my Ignite! speech later that night but I learned what to do and not, in future presentations.  I didn't know what an Ignite! speech was two weeks ago -- but when Regina put out the call to submit ideas for an Ignite! speech I did.  And since "Nothing is Impossible" I was selected to be an Ignite! speaker.  I spoke about my journey "From Flare to Flair" how I discovered my patient voice and found my "Lupus Style"

Sunday was #HCKC Health Camp Kansas City... I was a very "happy camper" especially after reading the rules, who wouldn't be? 

The Health Camp sessions were not determined until that morning, they were an extension of the information and passion that we learned the day before.  I loved the flexibilty and "crowd-sourcing" format of the panels and how people worked together to workshop ideas.

While we were workshopping at the Riverfront Cerner Conference Center we watched for and saw @DaveCorn who is swimming 1,000 miles to raise cancer awareness.  Follow his team @Swim1000 to learn more.  He got off the river where he enjoyed a bite to eat and cleaned up a bit and then took the stage and share his story of Cancer Awareness and his 25 journeys of 1,000 miles each.

If it were not for the generosity of @TrishaTorrey I would not have been in Kansas City for #TheWalkingGallery #Cinderblocks and #HCKC I will be forever grateful to Trisha for making me believe that "Nothing is Impossible."

Hugs and Smiles,

Amanda