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Friday, January 23, 2015

More Patient Travel Scholarships!

What does the “Cinderblocks2: The Partnership with PatientsContinues” conference (in Grantsville, MD pop. 825) and Doctors 2.0 & You conference (in Paris, France pop. 2 million) have in common?

Both events are focused on innovation and better communication within healthcare. 

Doctors 2.0 has the over arching goal of identifying the ways in which the inclusion of health 2.0 tools and social media platforms can improve care.

Cinderblocks2 is a mash up of art, activism, medicine, social media, HIT, patient rights and fire-dancing.  It is sort of like if Burning Man met healthcare.

Both events were founded and are organized by two powerful women:

As for Cinderblocks, I am Regina Holliday.  Sometimes called the Rosa Parks of Healthcare.  I graduated Sapulpa high school in Oklahoma. (GO Chieftains!) I worked retail for 16 years before my loving husband Fred died of cancer in 2009; then I became a patient rights activist and artist. I am a keynote speaker, a health information technology change agent and am currently creating The Walking Gallery Center for Arts and Healing in Grantsville, MD.   

Both events are on the same days!!!

Doctors 2.0 is on June 4-5, 2015.  Cinderblocks2 is on June 4-6,2015.  Now some conference planners would be shooting eye daggers at each other over that, not Denise and I.  We are all about spreading the love.

The most important thing both events have in common is that they will benefit from Patient Travel Scholarships issued by the Society for Participatory Medicine!

In 2012, The Society for Participatory Medicine created a patient travel fund so they could award ten $500.00 patient travel scholarships. These were issued to patients so they could afford to attend Cinderblocks1 in Kansas City.  We crowdfunded the money and we asked for direct donation to the site.  We were successful thanks to many kind donors.

When Denise pointed out that our events were on the same days she said it would be great if we could connect them in some way, so we decided we are going do some live streamed interviews between the two conferences. But why stop there?  I said that the Society for Participatory Medicine (#S4PM ) was going to provide patient travel scholarships once again for Cinderblocks, would she like to include Doctors 2.0 in the competition?  She said yes!  #S4PM said yes, they could issue awards for either event!!!

SO…. One day after I announce that HIStalk is epically cool and issuing travel scholarships for HIMSS,

I am announcing that the Society for Participatory Medicine will issue $500.00 Patient Travel Scholarships to attendees of Doctors 2.0 or #Cinderblocks2.

How do you enter?

You must post a blog entry by March 31, 2015 NOW EXTENDED to April 20, 2015 explaining why you want to go to either Doctors 2.0 or Cinderblocks2 and why a patient travel scholarship is needed. 

You must send a link to the post to me by either twitter or facebook prior to  March 31, 2015 NOW EXTENDED to April 20, 2015 If you do not have a blog, please send me your post as an attachment and I will find a blog you can post on as a guest blogger.  

You must also encourage people to donate to the travel fund. These scholarships will come from donations to the fund. I will do my best to encourage companies to sponsor folks but I have found when it comes to patients many small donations add up. (Below is just a screen shot you must go here to donate.) 

How will you be judged?

We will judge entries based on writing ability and need.  We will announce the winners on March 31, 2015 April 24, 2015. Payments will be issued after the conference events.

Responsibilities of the winners: 

You will need to attend the conference of your choice.  We encourage you to use social media during the conference.  We will need you to post a report of your experience on a blog.  After these responsibilities are fulfilled, the Society for Participatory Medicine will issue the $500.00 scholarships.

It is sure a great time to be a patient activist! Spread the word and good luck!

Thursday, January 22, 2015

HIMSS or Bust

Last year I had the opportunity to do an amazing interview with Tim from HIStalk.  It was a wide-ranging discussion that covered a great deal of the HIT (health information technology) landscape.   Toward the end of our conversation, Tim and I began to talk about the challenges patients face attending HIMSS.  Many patients would like to go this enormous conference with its thousands of attendees, great educational sessions and access to numerous health care venders; but cannot afford to pay for hotel lodging, airfare and an attendee pass.  We talked about the possibility of working together to create patient travel scholarships.

So today we would like to jointly announce the HIS-talking Gallery Patient Scholarship for travel to HIMSS 2015, April 12-16, in Chicago!

There will be five scholarships offered for $1,000.00 each provided by HIStalk.  Each winning attendee will also have  a HIMSS attendee badge.  The winners will write a post about why they want to attend HIMSS prior to the event. That post will be hosted on HIStalk.  They will be encouraged to use social media to report out during the event. They will also write a HIStalk post explaining their experience after the event. As the founder of The Walking Gallery, I will offer to paint a jacket for any patient winners who have not already joined The Walking Gallery. The HIS-talking Gallery patient scholarship winners will be walking talking patient thought ambassadors in the hallowed halls of HIT.  Also they will be able to sit in the comfortable space of the HIStalk booth on the exhibition floor whenever they want to rest and recuperate.

In addition, they will also get an official T-shirt!

 How do you enter?

If you would like to be considered for one of these scholarships, please email your request to (one of our newest members of the Walking Gallery): Lorre Wisham at  Your email needs to explain why you should be funded to attend HIMSS and please include your facebook link or Twitter handle. (International patients are welcome to apply but they must be fluent in English and the scholarship amount is a flat $1000.00 regardless of travel distance.)

How is it judged?

The HIStalk team will judge requests based on writing merit and I will be looking at the patient story aspects.

When is it due?

All requests to attend must be turned in to Lorre by Feb 9, 2015.  We will announce the winners within one week on  Checks will be issued before the event so winners can book their airfare with these funds.

 Why are we doing this?

I see this scholarship as a wonderful next step in greater inclusion of patients within the HIMSS conference.  I thank Tim and the entire team at HIStalk for their willingness to support patient participation in such a meaningful way.

Now, start writing those emails!

Sunday, January 11, 2015


What shall I explain about this painting? Shall I tell you that Mélanie Péron lives in France?  Should I say that she met Nicolas in 1997 when she was only 19 and he was only 21?  Shall I tell you it was a perfect love that was full of happiness?  Their love completed her.  His loving glance filled her with exquisite flutters, like butterflies. 

After 10 years of happiness, something was wrong with Nicolas.  In 2007, he was diagnosed with acute myeloid leukemia type 6.  He must be cared for 125 miles from home in a sterile unit.  He had aggressive chemotherapy.  The search began for a bone marrow donor.  In 2010, they found a donor. Mélanie would watch Nicholas within his  sterile room.  She would don her protective gear and walk in like an astronaut; her heart beating like the wings of a butterfly.

After four weeks of isolated treatment, he was allowed to go home and recover.  His already thin frame was now gaunt.  He turned to Mélanie and said,” I look like death.”  Then sobs racked his body, as he cried as guileless as a child. Little by little he grew better.  In August of 2008, they went on holiday in the countryside.  In December 2008, Nicolas felt tired and out of breath.  He went to the doctor and was told he was just anxious.  He was prescribed sleeping pills, massage and exercise.

By New Year’s Day he was very short of breath, so they went to another doctor. Nicolas had a double lung embolism. They went to the hospital and soon Nicholas had a fever.  Mélanie met an awful nurse who visage is seared with in her mind.  The nurse did not want to disturb the doctor on duty.  Nicolas was in so much pain but struggled to get treatment because of all the drug interactions.  He contracted a fungus while hospitalized.  Then Nicolas told Mélanie he had planned to ask her to be his wife.

Nicholas was hospitalized from January until March. Mélanie wanted to do something nice for Nicolas so she contacted a French singer named Bénabar and asked if he could play for Nicolas.  The singer came to the hospital room surprising Nicolas.  This created a butterfly effect in the entire care team.  They saw the power of art in a clinical environment.

A few days later Nicolas caught a cold.  He had such trouble breathing.  They were so alone.  As anyone who has along term illness can tell you, as weeks become months friends fly away.  They live in their fast-paced normal lives, while in the land of the sick the moments are counted on a clock without hands.

The doctors tried a heroic measure of high doses of cortisone in a short amount of time. Mélanie did not leave Nicholas’ side as fought hallucinations.  She stayed night and day. He was as terrified as a small child and oh, so very sick.

On April 12, 2009 Nicolas died. Mélanie was shattered.  She never had the chance to be a wife, so she was not a widow.  She had no role in ceremonies of death, set aside; she would find a way to conquer grief.

She would embrace the butterfly effect.  She would help others who suffered.  She would write, she would promote the arts and she would create l’Effet Papillon.  In September 2011, she launched this social enterprise hosting writing workshops for 80 oncology patients. This project continues to grow. Mélanie continues to make new connections.

She found me.  She found another who lost their love to a dreaded disease in 2009.   She found someone who could paint her metamorphosis, someone who knew the beautiful pain.  We feel the wings of change as the flutter by.  We know the power of the last exhale.  We know breath can change the tide of years, we know the power of butterflies.