Getting Creative: How a 20 Foot Long Colon Named Casper is Helping to Create Social Justice

If you read my previous blog then you already know a little bit about my incredible Aunt Beti, her views on equity, and the work she is doing to help underserved populations get better access to healthcare.  If you did not have a chance to read about her, please click here to catch up.

When I was interviewing Beti, I wanted to get to the nitty gritty of what she does.  I felt like so many of my blogs have been (and to be honest, will probably continue to be) so theoretical, and I wanted a tangible example.  Like what are you actually doing to make healthcare more accessible for these underserved and marginalized populations?  Here is her answer.

“That is a very complicated question.  One of the things that we do is approach people from where they are.  That is, instead of trying to take regular middle class ideas and messages, we get to know the community with which we work.  We spend a lot of time doing qualitative data analysis trying to understand what the barriers and facilitators are to getting health care.  We also spend a lot of attention on health literacy.  The underserved populations we work with are found in the lower socio-economic status of the american population, and so what we want to do is not simply tell them a message in high-school , senior level English.  We want to tell them a message that they can understand.  

I’d like to tell you about one of my most exciting projects.  We know that among many underserved populations, colorectal cancer is a major cancer killer, in fact, it is fast approaching the 2nd major cancer killer of all time, second only to lung cancer.  It was very clear to us that among one particular population we work with, the Latino population, that they just weren’t getting screened for colorectal cancer.  When we did some focus groups to try to understand why this was, we found a number of things that were interesting.  First of all, they didn’t know where their colon was.  Secondly, they didn’t know what colon cancer entailed.  Thirdly, they didn’t know anything about how to go about getting tested for colorectal cancer, and finally they didn’t know that if they were tested the chances were very good that they could prevent colon cancer because a polyp could be found and removed before it developed into cancer.  So we talked with people about what it was that they wanted.  And what they wanted was to really see how the process worked.

casp2So we bought a giant inflatable colon.  A colon that is 12 feet wide and 10 feet high and 20 feet long.   And inside this blow-up colon, which looks sort of like a bounce house, we put in simulated polyps so the colon has actual rubber protrusions that look like polyps inside of it.  It has examples of normal tissue, examples of cancerous tissue, and then finally, examples of advanced cancer that has gone through the membranes of the colon itself and metastasized throughout the body.  So we took this colon and we started using it at health fairs in a heavily populated Latino area, and we were amazed by the response that we got.  First of all, because it was so big, people would see it from a long distance away, think it was a bouncy house and their kids would drag them to it, only to find out that it was a giant colon.  They would walk through the colon and we would give them a guided tour where we had a promotor talk about colon cancer and what could be done to prevent it.

We wanted to do one more thing and find out if this (walking through the giant colon) will really help people get tested for colon cancer.  So we were able to get 300 fecal occult blood test kits looking for blood in the stool.  After they went through the colon, for people who were 50 or over, which is when you should start being tested, we gave them a fecal occult blood test kit and asked them to compete it.  We then waited to see what kind of response we would get.  What was most interesting to me is that when you do this in a doctor’s office you are very lucky to get 20%-30% so we were expecting maybe 50% of the kits would be given to us because we had just given the tour.  We were astounded that we got 76% of the fecal occult blood test kits back. Of those, seven were abnormal and we had arranged with a local hospital to provide free follow-up colonoscopies for those who had abnormal test results. Fortunately, none of the results proved to be cancer.

casp

We then went back to talk to people about what did you learn, what did you think about this, and so forth.  The answers that we got focused on and emphasized what we had discovered in our earlier focus group.  That they learned about the colon and that they had it, and they learned how polyps could develop and they saw how easy it was to get rid of these polyps.  So this project is a great example of the kind of study that we have done that really makes it clear that the underserved can take part in their own health issues if you make it available to them and if you teach them the information they need to know in order to make an informed decision.

On a bigger level, ideally, you would have agencies and organizations, such as the American Cancer Society and others, follow-up and do the same kind of process.  For example we have taken our colon, by the way whose name is Casper (capture all suspicious polyps and eradicate rapidly), to a number of community events and replicated the study that we have done.  Now if you wanted to do this on a national level, or a broader level, you would need to purchase a few of these giant inflatable colons…and I am not committed necessarily to the idea that a giant inflatable colon would work for all of the underserved populations, but it certainly worked for the Latinos.  We are currently testing this program in Alaska among Alaskan natives….”

Listening to Beti describe the innovative use of a huge, blow-up colon at first made me squirm (maybe I am a bit immature for the concept of a bounce house colon?), then it made me giggle (come on a 20 foot colon!!), and then it made me think (yikes, we are all in trouble now).  

We are never going to be able to achieve social justice or equity or even improved systems if we think inside the box.  This is evident by observing our current state of social injustice, inequity and inequality, and our crappy systems.

So let’s use our imaginations to dream up ideas so ridiculous and so crazy that they just might work.  Let’s make our world full of Caspers, full of imagination, and full of innovative problem-solving.  Let’s get creative.

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