The Walking Gallery Center for Arts and Healing

When I was a young girl I struggled to read.  In fourth grade I had a teacher that helped me beyond measure.  She taught me how to read well.  She cast me in the play Oklahoma.  She encouraged me to write and draw.  By 5^th grade I was reading chapter books all by myself.   My favorite books were all of the Little House books, A Little Princess, Pollyanna and Heidi.

The pint-sized heroines inspired me with their ability to overcome adversity.  I loved the idea of imagining and then creating a beautiful world within a cold dark attic.  I could envision a rainbow of color hidden in chandelier glass and play the game of always thinking of something to be glad about.  I could understand the allure of returning to healthy mountain air over the coal dust vapors of a Victorian city.

I have never forgotten these lessons of my youth.  I know the power of hope and friendship can heal so many wounds of the spirit.  Now I am an adult with a responsibility to spread goodness in a world that is often filled with sorrow.

I live in a small town teaming with young children and adults yearning to create. They want to draw and dance and paint, but in the winter opportunities to do such things are few and far between.

I work with patient advocates and medical providers from around the nation who cry out to me.  They tell me their sorrow and I paint it on their back; but sometimes they need more.  Sometimes they need a place to rest and reignite their fiery passion.  

I created a movement called The Walking Gallery and I need others who will paint with me and help to spread the patient voice. We need the space and time to turn hundreds of jackets into thousands.

So I ask you to help me build a vision into a reality.

In the healthy mountain air of Grantsville, Maryland I want to create The Walking Gallery Center for Arts and Healing.  There are rooms that will be galleries and rooms that will fill with laughter and dance.  There are bedrooms that will refresh the weary patient and inspire the striving artist.

All this will come to be if we work together and turn a vision into reality.  

We have 40 days to raise enough money to begin the process of securing this building.  I think we can do it, but not without your help.  Cancer 101 has agreed once again to act as our grant partner in this crowdfund, so all donations will be tax deductible. 

To quote the words of Pollyanna, “It’ll be just lovely for you to play…It’ll be so hard.  And there’s so much more fun when it is hard.”  

Thank You,

Regina Holliday

Tip Jars and Sustaining Members

In my line of work and type of advocacy, I get a lot of requests for pro bono work.  I support my life’s mission and a family on the money I earn from painting and speaking.  Though I am always trying to add to the public good, I can only agree to a few pro bono gigs per year.  Some of the venues that ask me to present are small hospitals, non-profits or universities that can only afford to pay travel, lodging and my babysitter’s fees.  I work with these folks because I so deeply want to help their mission as it aligns with my own.  We want to help patients have better lives and end of lives.  We want medical professionals to have joy in their work as they help others.

Some venues don’t have any money for patient speakers.  They cannot afford to pay for travel or lodging or anything else.  They may be very small and operating on a shoestring budget.  Or they could be very large but their advocacy is far reaching and the funds are pressed thin.

For the past two years @HIMSS has asked me to speak.  For the past two years HIMSS has paid my travel and lodging.  This year they cannot.  They would like me to speak, paint and spread the patient story far and wide but there are no funds for travel.

I did the math.  If I sleep on a friend’s couch or even bring a sleeping bag, I could go to Orlando #HIMSS2014 but I need to spend $850.00 out of pocket on travel and sitter’s fees.  I told my friend @ePatientDave I would probably bring a tip jar to set next to my easel in an effort to defray the cost.  Hey, it works for musicians on the subway.   Why not work for an activist artist at an informatics conference? 

Then a friend on twitter asked me if there was a way to donate towards my work.  Did I have a @gittip account?  I did not.  But her question intrigued me.  What was Gittip?

Well, I went to their homepage and my world was rocked!  It is a sustainable crowdfund! I wanted to fistbump the entire Internet! I have done crowdfunding before with great sites like @Medstartr and @Healthtechhatch, but that is a campaign specific and the funds I raise usually go to help others.  Here is the explanation from their page:

"WHAT IS GITTIP?

Gittip is a way to give small weekly cash gifts to people you love and are inspired by.

Gifts are weekly. The intention is for people to depend on money received through Gittip in order to pay their bills, and bills are recurring.

Gifts come with no strings attached. You don't know exactly where your gifts come from, and the maximum gift from one person to another is $100 per week.

Gifts are public. The total amount you give and the total amount you receive is public. Participants on both sides of the equation are rewarded publicly for their participation. (You can opt out of publicly displaying your total giving.)

Give by answering Who inspires you? on our homepage, and following the steps."

Wow!!! This could make a difference in the lives of so many patient advocates and speakers.

So here is my virtual tip jar: https://www.gittip.com/ReginaHolliday/

If you like what I do and want to support it in an ongoing way, this site is for you! 

Thank you everyone at Gittip for your valid work.  So many individuals in crowdfunding feel the shame of holding the beggars bowl; you have rebranded that bowl into a jar we can all be proud of.

**************************UPDATE*********************** 12:31 Feb 2, 2014

Just two hours later and folks are already donating!

@Sphere3 has already offered me a hotel room for HIMSS14!

God is good! I am so thankful and blessed to have such wonderful friends! What a great way to spend a Sunday.

Best Practices Every Medical Conference Should Embrace

(I rarely do a list post, but could not help myself today (blame it on my daily reading of @Cracked…)

I often attend medical conferences and hear about the best practices applied within medicine, but I rarely hear about best practices applied to the medical conference itself.  In a world of often shrinking budgets and limited bandwidth, we must choose carefully which conferences we should attend.  Embracing some of the suggestions below can make an event a must attend inspirational and renewing moment in our lives and careers.

1.     The standing table, lounging chair and the walking meeting

I recently returned from a wonderful roundtable discussion on clinical trials in Indianapolis.  We had great conversations about open data and patient participation.  The only bad part of the meeting was the back pain I began to suffer after sitting for a few hours.  I am among the ever-growing group of people who work at standing desks.  So staying seated is a special kind of agony.  Fortunately, I am also without a modicum of decorum and had access to my huge suitcase, so I made a standing table MacGyver style during the meeting.       

Some conferences already provide standing tables around the back of the room and I say kudos to you!  Health 2.0 is one, but if you know of others please give them a shout out in the comments section.

On the flip side of the coin of attendee comfort is the lounging couch.  As we invite more and more patients to medical conferences it behooves us to remember, many attendees are listening while in pain.  I applaud the all the conferences that offer a cool down or comfort room where attendees can recline.  But sadly, such rooms rarely have access to the content feed of the live sessions that are ongoing.  Medicine X is the first conference I have attended that offered lounging couches to any who needed to rest while taking part in the live event.   It was rather epic to see that level of inclusion.

Another great addition to the conference venue is the walking meeting.  My friend Ted Eytan, MD introduced me to this gem.  Don't feel your conference has to be contained within four walls.  Go "on the lam" in a official capacity and have some of your breakout sessions outside while walking.  It is incredibly refreshing!  

2.     Inviting e-Patient Scholars and Patient Advocates

The ePatient movement is really expanding.  More and more patients are taking a hand in their own medical futures and helping shape health policy.   Their questions during Q&A sessions often change the direction of the conversation of the conference itself. Their keynotes and panel speeches help other attendees to express their own personal health stories.  Many of these patients and advocates have very strong social media profiles and their live-tweeting of events has exposed conference conversations to the wider world.  Look no further than Medicine X to see the enormous potential of e-Patients to spread the content of a conference.  

“But where do I find such e-Patients?” I often hear in response. Well @speakerlink is a great place to start looking for potential attendees and speakers.  Another avenue is participation in online discussion groups on Facebook, twitter and LinkedIn.  The future in medicine is "Patients Included." 

3.     You must list your #hashtag on Symplur

I can talk about the power of twitter to spread your conference message until I am blue in the face, but without analytics to support my point it is only so much hot air.  Thank you Symplur Hashtag project for providing proof of the power of conversations.  For free.  I ask conference managers to please to list their conference hashtag on Symplur.  Symplur will archive those tweets for easy access and provide  analysis of the day.  Your data will add to the ever-greater haul of big data available for analysis to determine trends within healthcare. If you do this prior to your conference it is a great tool for pre-promotion.  (If you wait till the day of the event attendees like myself will often do it for you, but don’t count on that as a back-up plan)  

It is a win/win situation.   Now all those ePatients can tweet and spread the conversation and you have proof of the level of spread.  You just have to focus on how to fund those e-Patient Scholars.

4.     Crowdfunding at the Medical Conference

Hosting a medical conference is expensive.   It is somewhat terrifying to know you have to come with thousands of dollars to make your vision of a conference a reality.  Even a conference run on a bare bones budget will cost about 25K.  Sponsors are great if you can get them (thank you Cerner!) and a well established conference often can.  For the rest of us crowdfunding is a godsend.  I personally have worked with both @medstartr and @Healthtechhatch for crowdunding in the conference world.  We focused the crowdfunding effort on travel and lodging scholarships for e-Patient scholars.  Working in partnership with a non-profit in line with our conference mission was a great help in securing funds.  

But the power of crowdfunding attendance to enable participation in continuing medical education is not limited to conference organizers.   E-Patient scholars and patient advocates should consider this route to cover their participation expenses in health conferences and classes that do not offer sufficient scholarship options.  A proof of concept is our dear friend @AfternoonNapper who has done so much for the role of the patient in the world of medicine.

5.     Traitwise surveys are the way to go.

So how many of you look at that after-conference response survey in your email in box and whoop with joy?  I bet very few of you do, unless it is a @Traitwise survey.   Not only does Traitwise have a pleasing graphic interface and font selection not reminiscent of the early 1990’s, their surveys are fun.  They keep you in the loop and informed on how your response fits into the greater data set of the conference.  And after you complete your conference survey, you can keep going, filling out survey after survey for the good of mankind.  One of my fellow e-Patients did exactly that after the Partnership with Patients conference.  They broke the record for most answers in one session with over a thousand.  (Another reason you should invite e-Patients: We are very giving people.)

6.     Teach attendees how to live-tweet

One of my favorite quotations is probably misattributed to Sen. McCarthy:  “Beware of Artists they mix with all classes of society and are therefore the most dangerous.”  Yeah, artists specialize in mixing it up, but to do that they need a forum. 

Nowadays Twitter is that forum, for artists and everyone else.

If you are running a medical conference for the good of your attendees and the wider world of medicine, you have several goals.  You want to break even.  You want people to have an enjoyable time.  But most of all, you want people to walk away inspired to make this world a better place.  In healthcare, many individuals feel they do not have a voice in policy discussions.  I am not just talking patients here.   I have spoken to a great many doctors and nurses who feel like they have worked to make a better system for 20 years without sufficient progress.  They are discouraged and feel alone.  I challenge all of you conference planners to get them live-tweeting, to help them realize there are hundreds, even thousands who think as they do. 

I have attended two conferences wherein the conference planners designed an entire webinar around teaching attendees how to live-tweet.  One of these events offered a webinar and 1-800 number support to walk attendees through the entire process.  The conference organizer

offered raffle items at the event that attendees who live-tweeted were eligible to win.  So many new twitter voices joined a wider conversation due the efforts of one conference planner. 

Do you want your conference to live beyond the after-conference survey?  Do want your attendees to act upon the content they absorbed?  Then help them tweet; help them discover the voice they always had.

Remember, online the Q&A never has to end and the microphone is accessible to everyone.