One of the most thought provoking dialogues for me personally at MedX was that of Gonzalo Bacigalupe (@bacigalupe) on healthcare disparities. Gonzalo took the time to pause and pose a question to all of us, “Has the leveraging of technology in healthcare actually caused an increase in the inequality of disparate communities?”
Is the simplistic answer of lets throw more technology at the problem the most ideal solution?
Can technology perpetuate the social inequalities in less fortunate populations?
When a technology is shown to work in a pilot market and makes a dent in health outcomes, will it also help the disparate groups?
We tend to get very excited about technology in healthcare. Most of us in healthcare feel that technology means innovation. How often do we stop to ask who is at the center of the innovation? When we do stop to think about the innovation, are the most at risk and vulnerable patients and/or populations at the center? Are we designing the innovation to ensure that the patients and communities that need the most help are the ones benefiting?
I paused to reflect on these questions myself.
Almost a year ago today my own father, a second generation Latino, Spanish as his first language, born to a mother and father who worked the fields in San Antonio, was diagnosed with Stage 4 pancreatic cancer. My father was a blue collar factory worker of the middle class, his wife a nurse, his son a cancer “expert” with a clinical and administrative background in cancer. Yet with all this “expert” healthcare surrounding him, he was still diagnosed at Stage 4, and with all the “geeking care” I performed to get him diagnosed and into treatment in 3 days, he still died 6 weeks later.
I then thought of his sister, who died 4 years prior to metastatic breast cancer. She too was Spanish as her first language, and more importantly, her only language. She was illiterate. She was widowed. She had 5 children, none of whom made it past the barrio. She had no real access to screening or healthcare coverage. She noticed a mass in her breast, went to have it checked at the free clinic, and after months of being a ping pong ball across a healthcare system she was finally diagnosed with breast cancer. Fortunately she beat the first diagnosis, but as with most women in her situation, she was lost the system, fell through the cracks, and it wasn’t until I saw her and she was complaining of back pain that I suggested she go get a bone scan. Unfortunately my hunch was correct, and she had metastatic breast cancer. Her outcome was to die at home shortly after her second diagnosis.
I think to working in Billings, MT where we had a research grant to promote screening and access to cancer care with the Tribal Nations. The initial problem was that the hospital was sending a bunch of middle class Caucasians to various reservations with handouts and lectures. It was their story versus a story that was intended for the people, by the people. It wasn’t until several of us “minorities” began to educate others that if you are going to make an impact, leave the iPads and iPhones at home. Take an offering, present it to the tribal leaders, discover their language, their stories, and then develop a story that means something to them. Deliver the story where the people are, in the language they understand, as well as how and when they want to receive the information. In a few short months, our impact grew by +30% in the tribes we worked with in MT.
I have been in so many discussion as of late with US Healthcare leaders trying to break into healthcare markets such as Ghana, Turkey, China, and Brazil. The leaders continue to discuss leveraging iPads, EMR, and thinking in terms of screening for breast cancer.
The problem is, that is our US thinking, and not the global view. If you focus on women in Ghana, yes breast cancer screening will impact some women, but the bigger need are for pregnant mothers dying during child birth. So why not focus on ensuring women have a single birth, that the child is not breach, that the cord is not causing any issues, and that the mother can survive birthing her child?
As for an iPad, do people in other countries understand how to interact with the technology? Is it as intuitive to them as it is to us? Not to mention, does the technology stay put or is it easy to lose, get misplaced, or go missing? If it goes missing, what happens to the ability to care for those most in need? What about access to power?
Most of us enjoy stories on how technology saves the day.
The better story is the one Gonzalo pushed me to remember, how do we make a meaningful impact in the lives of those that need our help the most?
How do we help to understand and articulate the story of those communities that do not have a voice? How do we help them to be heard? How do we help to broadcast their story? How do we ensure that their story is one we focus on and improve?
How do I ensure that my work continues to ensure that the story of my aunt and my father is not forgotten, and most importantly, that I limit the number of times it is experienced by others in the same communities?
My responsibility is to help tell their stories and ensure history is not repeated.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek
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