Tuesday, January 8, 2013

Kicking off 2013 with Regina Holliday

One of the great assets of dipping into social is the opportunity to watch movements and events - from political uprisings to breaking news like Sandy Hook - take place.  Some flare then fall away. Others begin as a small spark and grow steadily until one tipping point after another is scaled. Then suddenly, everyone wonders what it must have been like before. 
          Regina Holiday is one of those sparks.  I've been following her work and advocacy for more than two years with sheer admiration for her guts, passion, intelligence and relentless determination to set things right.  Hers is so much more than, "I never want what happened to me to happen to anyone else," even though this is certainly part of her mission.
          That mission involves medical data, patient empowerment and making possible the movement toward centered patient care.
          Every hospital in the country is going to tell you they practise patient-centered care.  But patient centered care in its loosest definition, includes (not excludes) the patient's significant other,  an explanation of the patient's diagnosis and outlined treatment plan, a copy of that plan, an explanation of tests and procedures,  repeated as many times as the patient and significant other needs to grant approval. As I said, this is a loose definition.
          Regina Holliday and her husband, Fred, received none of this in a large hospital in the greater DC area in 2009.  From the bare outline of her story you'd think it was something from the dark ages.  It wasn't.  Her husband died on June 17, 2009, just two short months after being diagnosed with a Stage IV renal carcinoma.  This diagnosis had been missed -- the symptoms not even investigated - on four separate occasions.  In a major metropolitan area.  He was given antibiotics, then pain killers and told to go home.
         But  Regina and Fred's story doesn't end in tragedy.  It only begins there.
Little Miss A-Type: Regina Holliday's jacket. 
         Regina transformed her grief into action.  An artist by inclination and training, she documented their story in murals, paintings.  She spoke publicly, at prestigious patient conferences and symposiums. She became the visual reality of the epatient- "give me my data" movement that is part of the Society for Participatory Medicine.
         For all these reasons and so many more - we had Regina as our first guest for 2013 on #BCSM last night.  It was 60 bristling minutes of discussion about change, educating others, and taking charge of our own health.
        I've put together a Storify of the chat here and the full Symplur transcript here:
        When Regina asked the (alleged, my very obvious editorial judgement) oncologist for details about her husband's diagnosis, her referred to her as Little Miss A-Type Personality. 
         Little did he know he was messing with the wrong woman.


katie ford hall said...

Fascinating. Thanks Jody.


Dee said...

I was jumping in and out of the discussion last night. Thanks for sharing more of her story and the script.

Jody said...

She is an amzing advocate!

Thanks for joining us last night. Please hop on a conversation again.


Anonymous said...

Regina's passion, imagination, and ability to tie her art directly to the emotional aspects and concepts of data related to a patient’s records is profound. Until last night I never gave my medical records much thought, I’ve just thrashed through the system to get what I needed when changing institutions, and currently see limited records in MyHealth…but, can now see how important it will be to pull some semblance of order given my diagnoses.

Unknown said...

Brilliant description of Regina's mission and biography. Thank you, Jody, for sharing her with us. You too are an amazing advocate!

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