Tuesday, April 26, 2011

Storify Health Narratives | To Narrate, or not to Narrate

Hi Colleagues,

You may have noticed that I post weekly health narratives in my channels online.  Have you found yourself asking, "Why is she telling me this? Isn't healthcare private?" or "What is this?" Then this post is for you.  

Waiting room at UW Women's Healthcare Center (above)

I observe healthcare to be both situated and systemic, meaning that I experience healthcare individually, socially, culturally, politically, legally, and institutionally.  Each word I write, text I produce, and tweet that I post is a legal affair in a society that relies on the written word for determining reality and truth.  What's more:  seemingly localized narratives such as mine can influence policy and change.

Waiting... (above)

I do not see healthcare as separate or private, save my choice to opt-in or out of disclosing information about my health.  I define health via its root, holism, which derives from "whole," or the concept of being whole.  Holism requires multiple frameworks, or more than reason or science or the body, but those with all the rest of us:  emotions, spirit, relationships, society, culture, and so on.  Put together, each of these dynamics imbue power and perpetuate a system that may or may not fully or fairly care for your, my, or our health.  I find it takes courage, yet it helps, to share my health inquiry, challenges, and outcomes with others.  How else will we cure together?

Waiting together... (above)

Moreover, I must be transparent and public to lead with credibility.  A public service mindset means we consider the public consequences of our seemingly private decisions.  Building from Kouzes and Posner (2003) and Ai weiwei, compassion as "suffering with" means I must go through a healthcare process to give the system a full and caring critique.  

This leadership philosophy benefits and burdens me.  I want to contribute arts, communication, and leadership as applied to transforming healthcare in my research and consulting work.  I draw on my experience and challenges as a constituent in the health system.  Bent on transforming problems to opportunities, I work to co-redeem these difficulties in part by benefiting society with more effective, equitable, and humane outcomes for constituents, clinicians, staff, and other related people.  My goals include consulting civic leaders and healthcare organizations and partnering with the communication sector to innovate technology or social media remedies to healthcare communication.  My thesis laid groundwork for ethos, research, and praxis in these areas.  

Waiting some more... (above at Polyclinic Rheumatology)

How we design, write, interpret, and share research reflects what we value.  Research as value-laden means that people create and influence the process and outcomes by design, just as clinicians document histories in charts.  This reality influences what tests clinicians order, what orders insurance companies pay for, and how our society constitutes health.  As a result, research and health inquiry weild a degree of power.

I want to de-center clinician narratives by contributing my own.  Rhetoric, or meaning-making and persuasive texts, influence beliefs, behavior, and decision-making.  To these ends, I rename physicians/doctors/providers clinicians and patients as constituents.  Remember we provide health for ourselves, too.  We must take care how we communicate, organize, and lead health if we want health to be democratic and with justice for all.  Healthcare reform via communication involves ensuring participants speak their voices and others respond to what they hear.  

Storify screen image (above)

Storify provides one such means to give voice by amplifying and giving context to people's streams.  Amplifying one stream amid context recognizes that people's voices are situated and systemic.  Storify draws content from my twitter feeds.  I want them to add my other social network channels to the feed gateways in the future.  In the meantime, I write and organize my tweets with section headers each week to track my path or progress through my health inquiry (1) and to identify obstacles and recommend solutions (2).  I intend to use these health narratives to inform my research and recommendations, theory and praxis (ideas and application), and poesis and ethos (creativity and ethics) to narrative healthcare.

Access my health narratives at

Follow me on twitter at

I jot notes during my health inquiry.  Each drop of blood, tear, and ink must be honored.  Tweeting helps me write with brevity, regard for my audience, to categorize values and themes (e.g., via the hash [ # ] symbol), and even to influence clinicians or institutions via tweeting to profiles [ @ ] and so placing my tweet in their timeline.  One such institution has already direct messaged me inquiring if I had problems with setting up an appointment.  No, I did not at that instance; however, I felt encouraged to know that points of contact are possible and expeditious via social media.  Hashing can be practical, too; I "hash" my spouse my health posts to keep him in the loop about scheduling, my research, and so on.  To his credit, he has helped me to create a backlog to "story" ideas for software development for healthcare communication.

In my office:
8 vials of blood + 1 urine sample later + 4 specialists to go...
for now! (above)

I make these efforts amid my own health inquiry, which requires me to envision a bright future and trust that God loves me, has a plan for my life, and will provide the resources to support my journey.  Those resources include family, friends, colleagues, clinicians, fellow constituents, and the environment/created realm.

Health narrative collage (above)

Remember that health is not just situated, or individually confined to my body.  Nor is health power only systemic; I'm responsible to communicate health and influence change where needed.  UC-Davis and Global Healthshare Initiative applies nutrition and genomic research to improving global health and takes rhetoric and communication to heart in renaming healthcare as healthshare.  This move emphasizes the need to offset health disparities around the world.  People build community with resources, and one resource includes health and nutrition.  Sharing health as a resource reduces poverty, and reducing poverty can lead to peace.  We live in a large world where our actions influence those we may not yet know.  So you see that communicating, organizing, and leading health involves social justice.  

My peace I leave with you
not as the world gives
but as I give you
neither let your heart be 
troubled or
afraid...
~ Jesus (John 14)

Mainly, it's necessary to demystify health, or make it seem less of a scary behemoth.  Staying calm can do wonders for decision-making and quality (remind me of this during my next appointment or lab test!).  For me, staying calm involves growing in my/our faith and then acting on what I know (1) and want (2) to be true.  Demystifying healthcare also involves naming realities instead of remaining silent or ashamed.  Silence, fear, and shame perpetuate health stigmas and disparities.  It's important to break cultural silence when seeking reform.  So I name blood and urine, I reframe illness as challenges, yet I also say leadershipfaith, and reform.  There's need to respect, and not fear, these words and experiences.  Barring all else, a sense of humor helps to demystify healthcare and reduce fear/shame:  "I left you a present," I said of the urine sample, smirking, to the phlebotomist as I left.   

I pray God provide and guide my way so I can live (1) to help (2) myself and others with what I learn, give, and teach.  Narrative healthcare requires courage!  The irony:  I find courage in the sharing as I publicize my health quest.  Overall, transforming healthcare requires research approaches that reduce separation instead of people, that draw people near instead of apart, and that utilize high touch and high tech.  Think up close and personal; think in the thick of it and systemic.  I keep pick-pick-picking at the tip of the iceberg as I near the waterline.  Want to join the expedition or hold my line?  I appreciate your support, prayers, and insights!

What would you hash [ # ] / tweet regarding healthcare reform?  
What do you value in health?  
How do you describe health/care?
What's your [ health ] story?

Thank you for reading,
Dena

References

Klayman, A. (Dir.) (2011). Who's afraid of Ai Weiwei? [Motion picture].  Retrieved April 26, 2011, from http://www.pbs.org/wgbh/pages/frontline/ai-wei-wei/

Kouzes, J.M., & Posner, B.Z. (2003).  Credibility:  How leaders gain and lose it, why people demand it.  San Francisco: Jossey-Bass.

Rosko, D.M. (2011, March 25). Trajectory and links in narrative healthcareRetrieved June 8, 2011, from http://www.textandpixelreflections.com/2011/03/trajectory-and-links-in-narrative.html

Rosko, D.M. (2011, June 6). 
Health narrative: Communication solutions for degenerative conflict in clinical contextsRetrieved June 8, 2011, from http://www.textandpixelreflections.com/2011/06/health-narrative-communication.html

Appendix: Sample Health Narrative