Yesterday, through a rather spontaneous sequence of events, I presented the work of THE BETES in Edgar Rivera Colon’s Qualitative Research Methods class at Columbia University’s Narrative Medicine Department.
Edgar and I have been following each other on social media over the past year. As a medical anthropologist, Edgar
“ trains frontline African American and Latino/a HIV/AIDS activists in the use of ethnographic research methods in developing community-level interventions”
I’ve been very interested in how he brings different fields together to forward Social Justice causes in local communities. And he has a very specific and needed skill set he brings to the table: developing and implementing methods of Qualitative Research.
One of the constant challenges we at The BETES face when presenting to the medical and business community is trying to quantify the unquantifiable in our measure-and-quantity obsessed biomedical finance culture.
For example, how do we measure the value of releasing grief?
Edgar and I had a wonderful discussion with his students about what we are doing with The BETES, and how it intersects with and varies from the work of the Narrative Medicine program.
During that conversation, he asked me if THE BETES has an essential research question for a potential future study.
Without hesitation I answered: What is the effect of processing one’s experience and story of illness and its meanings on empowerment and health care outcomes?
In other words, how do we prove effectiveness?
Ironically, just earlier in the day I had participated in an online webinar led by DLife titled
“Behavior Change Programs – Defining and Measuring Value on Investment (VOI)”.
(…Ok. I understand. If that to you sounds like a dreadfully boring webinar, Believe me, I get it. I never thought that as an artist – a physical performing artist – I would be sitting at the computer participating in such, to be frank, admittedly dreadful sounding programs. )
However, the webinar was fantastic in helping to clarify how funding criteria for programs are changing.
The program featured leading experts* speaking about the beginnings of change in buying criteria for consumer healthcare.
*Michelle Snyder of Welltok
*Kayla O’Neal of Lockton Benefit Group
*Paula Lunde of Blue Shield, California
*Adam Kaufman, of DLife and DPSHealth
(BTW- Do you see how I’ve learned to use this lingo?)
Here’s my brief summary of that DLife webinar:
WELLNESS PROGRAMS THAT FOCUS ON VALUE
- Changing Return on Investment (ROI) —> Value on Investment (VOI)
The “ROI” corporate structure is non-applicable to wellness programs and has drawn sharp criticism, and rightfully so:
“ If the objective is to change employee behavior, then a biometric screening is a pretty ineffective way to do it,” Khanna said. Instead,
” Well-being (programs) focus on the mindfulness of what it takes to live a healthy lifestyle. ”
Change takes time and true health mandates a holistic approach.
Additionally, “driving engagement and activation will touch and influence all of the other buckets”
( the “buckets” are those grey squares surrounding the green square in that silly chart, below.)
So, what are these new defining values for programs that help foster
– Softer metrics
– Risk reduction
– No “one size fits all” (Programs highly customized for the population they serve.)
What all of this is really a case for is leading Qualitative Research Assessments of programs first, and only later leading quantitative assessments.
Considering that The BETES has an incredible engagement level in its programs and our form is flexible enough to change to any environment, we find this very heartening.
Most heartening, however, was the underlying principal in the webinar that can be summarized in this one line:
“It takes time.“
What all of this also shows is the beginning of the understanding of the necessity for incorporating a cultural model of health into the practice of health care.
Quoting Edgar Rivera Colon: “People, in healing themselves, need to affirm their own culture.”
And as The BETES works to answer its most difficult question that I opened this entry with (What is the effect of processing one’s experience and story of illness and its meanings on empowerment and health care outcomes?.. in case you forgot) I quote Marie Ennis-O’Connor (who has also clearly read the medical anthropologist Dr. Arthur Kleinman who identified the necessity of creating a meaning – centered practice of health care for chronic illness in 1986) in her entry:
” Our current bio-medical health care system reframes illness to disease, reducing the patient and family experience to pathology. The medical chart becomes the official story and the doctor the teller of the patient’s story. What happens when the patient narrative doesn’t match the physician’s version?
Conflicting illness stories will hinder treatment because the meaning we give to our illness is significant in terms of managing our illness and contributing to our well-being. Medicine organized around meaning encourages more humanizing care rather than the current standardized care. “
That is certainly, the beginning of the answer.
Please help support our work in this critical time as we continue to build our organizations infrastructure in order to fill a critical gap in current care.