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.
And I am angry.
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.
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.