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Friday, January 20, 2012

All Fields Required

The lobby in my building is under renovation.  It was pretty to begin with, but the management of the building has decided to make it glorious.  Now, when a friend comes see me or a potential tenant waits within the lobby they are surrounded by beauty, comfort and welcome.  The management of my building understands that first impressions are important and affect the entire experience.

Design matters.  Words matter.  The equivalent of my welcoming lobby to a webinar or conference is the registration page.  Have you taken a good look at your registration page? The way organizations and events design their registration screen reflects their view of the attendees.  I filled out quite a few registration pages in the last two years and have come to dread a simple phrase: “All Fields Required.” 

“Please list your terminal degree.  Please list your medical facility.   What is your position in your organization? How many beds are in your hospital?”  As I stare at the blinking cursor, I wonder if they even want me here.   Where are the questions for patients? 

And try as I might to make my high school diploma and patient experience fit within the field for terminal degrees, I cannot.   I must give up and contact the conference or webinar and beg for a manual entry. 

It seems as if the event organizers are saying:   “Yes, you can be part of our event but patients must enter through the back door. “

Time and time again, I have heard organization say they want to include patients, they want to address disparities, but yet what has been done to include us as an intrinsic part of the process?

When I am in a meeting, be it a webinar or a physical conference, I am there as a patient activist.  I may be tweeting, blogging or painting, but I am there to fulfill the honorable duty of representing the individual patient voice.  I will ask the hard questions, I will make myself the fool, if only to voice the concerns of those countless ones who suffer beside me.  I have neither an organization to represent nor clinical job title that could interfere with my singular purpose of voicing the patient view within the healthcare discussion.

The Patient Voice


And I am angry.

I am frustrated that my compatriots and I beg to attend conferences and events when we should already be included on the master list.   Often we are invited as only an afterthought.  If we truly wish to see patient-centric care in this nation patients must be included in the design phase and not as part of the epilogue. 

I will take the phrase of the establishment and twist to include a new meaning.  If we are to change healthcare, then indeed “All Fields Required!”

I want to see artists and poets, mechanics and clerks at conferences.  I want them to stand before the crowd as the patients they are and bring the voice of truth and pain.   I want to see a board of directors with a single mother that is caring for a sick child.  I want to see ivory towers leveled and those precious white stones used to pave a path for the sick, injured and suffering. 

Indeed, I demand you use that phrase to plant seeds.  There is not a patient among us who could not be a fertile bed for ideas and solutions to the current problems in health care.  Leave no field fallow within this debate.  You want to create measures that track adverse events and medical errors?  Involve the patient.  Ask Trisha Torrey who would have caught her diagnosis before Chemotherapy; no one caught it but her.  Ask Alicia Cole who realized the spot on her flesh wash not a black dot of a sharpie marker, but instead the threat of imminent death.  She would tell you it was her mother who saved her life.

I dare you.  Live by your words.  Make all “fields” required.

6 comments:

  1. I was invited to the January 13, 2012 FDA MDUFA meeting and paid $1700 of my personal, uncompensated funds to attend and was ushered by staff to the periphery and not allowed to participate. I had previously attended the 9/23-24/2012 FDA Patient Representative workshop where I learned that implanted medical devices are cleared without clinical trials, no warranty and the Patient/Consumer Representative is not allowed to vote. My only avenue for advocacy were FDA/CDRH Town Hall meetings in TX and CA - 5 MINUTES each. This must change. No meetings should occur without our presence and participation. Organizers and those present at these meetings are responsible for insisting on culture change. Lucien Engelen is my new hero: http://lucienengelen.posterous.com/no-show-patients-on-conferences

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  2. Dear Regina, how true. Please have a look at my blog of yesterday on this topic. I organized a fair amount of conferences like TEDxMaastricht etc. At this we've put 5 patients on stage, and the first one to ask was our mutual friend e-PatientDave. Have a look for http://www.tedxmaastricht.nl/inspiration/videos/
    This year the second edition will be no less, and our Radboud REshape Academy where Dave gave his first e-patientsbootcamp gives scolarships to patients. http://www.radboudreshapecenter.com/2012/01/reshape-masterclasses-2012-patient-as-partner/

    The day before yesterday i decided it way enough, slept about it one night and the wrote my NO-SHOW patients blog :
    http://lucienengelen.posterous.com/no-show-patients-on-conferences

    i call all healthcare conferences to follow our example, all visitors to do the same, let's hope that in a year from now, we have forgotten that we used to be surprised that patients take the stand.

    Lucien (Zorg20)

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  3. Dear Regina,
    You picked again what matters and hurts! That's right, many application forms do not have anynthing under a postgraduate degree and nothing outside healthcare or academic professions. Had same problem recently at an international event that had invited patients but under professions, if not medical, there was "other". Usually, forms when they have this classification other they also have a box underneath to explain what's other. In this particular case, there was not. So everyone else in that event was a "somebody" with a name and a professional tag, myself was just "Kathi other", although I was invited....
    Lucien is right, we should accept invitations only from event organizers who, by their tell-tale signs, show that they do value the presence of the patients.
    Moreover, it should be understood that not all patients are holders of MBAs or PhDs, there are high school and no school patients and all should be respected, as a person, starting with a registration form that is easy and not downrating them in any way.
    Kathi Apostolidis (@kgapo)

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  4. Well said. One of the best patient advocates in our city has not graduated High School. No GED. All fields required: and "None" won't do! I can't even remember how she was identified when we registered to present together at an upcoming conference. I have an MA in Broadcast Management and have consulted with the top broadcasting companies in the United States. I started listing my MA as "MArts" after medical folks kept asking me if I was a medical assistant . . .I've asked for patient tracks instead of afterthoughts in calls for abstracts -- but I don't think we're there yet for most conferences and forums. (When my daughter was very young and very sick, one nurse with gold chains and lots of chest hair sticking out of his scrubs said to me, I know you're "just" a housewife, but what did you used to do?!) -Lisa Morrise

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  5. Dear Regina, updated the blogpost on the NON-SHOW Patients-Act after i created a catchy logo that conferences can use that they have "Patients Included" ;-) http://lucienengelen.posterous.com/no-show-patients-on-conferences

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