On epatients, women and poetry

Posted by Liz on Oct 4, 2010 in Inspiration, women's health | 4 comments

A week ago, I wrote a post on crowdsourcing menopause with the intent of leveraging the collective force and spirit of women for the better good, or more specifically for our health and wellbeing as we age. I wrote the post just prior to attending the Epatient Connections 2010 Conference in Philadelphia, two of the most inspiring and provocative days that I’ve spent in some time.

You may not be familiar with the term “epatient” but it’s become a buzzword in the health world. And yet, the epatient is a concept that continues to evolve and is not entirely understood by practitioners or researchers or even by many patients themselves. However, like crowdsourcing, the epatient movement has sparked an interest in consumer engagement, participation, collaboration, sharing and connection, all in hopes, as my friend Jane Sarasohn-Kahn implies on her fine synopsis of last week’s conference, of building a foundation of trust upon which health and wellbeing can thrive.

So where do women fit into the epatient movement?

As women, we have long stood on the sidelines as researchers apply study findings in men to our health concerns, as insurers characterize natural life events such as pregnancy as “pre-existing conditions” and on a more personal note, as battle lines jave been drawn between those who insist that menopause is a disease that needs to be treated and those who want to address symptoms in a kinder, more gentler, holistic fashion. Yet, regardless of age or mandate, women need to fully engage in decisions that being made about their healthcare.

A key component of engagement is access: access to health records and notes, access to plans of action and strategies, access to our healthcare practitioners when we need them, access to the right people, to the right information and to the right line of thinking. And at times, access means going round and round and around before we are able to cross imaginary lines that heed our progress and find the path to health. My friend Regina Holliday, a Washington, DC-based patients rights arts advocate, has been leading the fight for access since the death of her husband in June, 2009.

While Regina’s fight is not gender- but people-based, she has demonstrated that women can be powerful advocates for themselves and those they care about, and that advocacy is often borne out of resolve, love and self-respect. Moreover, Regina has shown time and again that sometimes, the smallest gesture can resonate the loudest, a flick of the paintbrush, a line in a poem.

James Russell Lowell once said that “the eye is the notebook of the poet.” For Regina, the eye is her art and her mission, and the window to what has become her soul’s work.  At the epatient conference, Regina stood onstage and invited a glimpse through that window. And what resonated most was her resolve self respect — as a woman, a mother, an advocate and an artist. Her path is unique and yet universal because it is about support, participation, engagement and love. And I suspect that Regina will continue to go round and round until her path is fully illuminated and she reaches her goal.

Below are Regina’s wheels.  I believe that as women, as patients and as mothers, friends, wives and lovers, we can use our resolve to crowdsource and advocate for our health and well-being. What are your wheels? What is your path? And what are you willing to fight for?

Death of the Paper Transfer© All Rights Reserved. R. Holliday.

The Wheals on the Bus By Regina Holliday 3-17-10

The wheels, the wheels: they are a turning,
And past abuses do impress upon this fight.
And thoughts of riots, rights and rulings,
Spin in circles in the shadows of my mind.

I go to sleep at night and think of coding.
Is our savior high within the data cloud?
Is access to our care, as great as knowledge?
Where shall peacefulness be found?

Does freedom lie within a soup of letters?
Do PHR’s and IEP’s and EKG’s and HIT
Open doors to our gaining knowledge?
Is ARRA an acronym, or is it a primal roar?
Arghaa! Arise! An EPI pin, to stimulate
The growth of understanding,
That we are all Patients in the End.

Here, I take my stand. I can do no other;
For past abuses do inform this time,
And, two by two my Luther’s tell me
To demand my data rights ,
To be resolute, that separate is not equal,
And that no man,
Should stand
Between me and the Word.

Is 1135 a page in the Annals of Oncology about Kidney Cancer?
Or is it Volume 113 of Pediatrics no. 5 in 2004: “The Genetics of Autism.?”
Or is 1135… simply, “JESUS WEPT.”
I will see you in Galilee, Galilee, Galilee
I will see you
In the ring, the circle, the circuit,
And the wheals they are returning….

The wheels on the bus go round and round,
Round and round, And Rosa parked.
She refused to give up her seat at the table.
ICD-10, Do you intend, to save me from my coding?
Do you entreat, that we retreat?
And expect the patients, now informed and comprehending,
To sit idly by awaiting your instructions?

Physician Heal thyself,
And let empowered patients speak,
And draw attention to those that seek
A better and healthier tomorrow.

About the poem… in the poet’s words

I wrote this poem in the weeks leading up to the final healthcare reform vote in March 2009. At that point, I had done many interviews with reporters who wanted to focus on insurance reform and did not want to discuss data access, nor did most people really want to talk about viewing the patient as a whole person.  So, I wrote a poem that would mention HIT, Health Reform, Autism, Child Abuse and Jesus.  It is quite a heady mix.  It can be hard to listen to.  But patients are complex and if we truly listen to them we can change everything.

Regina Holliday