What Does It Mean to Look Upstream?

As a child snuggled in my white, midwestern, small-town world, I don’t recall many instances of feeling unsafe. I do, however, vividly recall one perceived threat to my personal well-being — the widely reported but highly unlikely possibility of biting into a razor blade in Halloween candy. The fact it happened somewhere was lodged firmly in my mind. Today, I look back and see that I can trace a direct line from that tiny nugget of news to my passionate and longstanding pursuit of a better world.

Within a few weeks of starting my healthcare career in 1990 (and more than two decades after overhearing the razor blade story), my first health outreach initiative was a mini-campaign promoting Halloween safety. A press release. A print ad. Thousands of strips of orange, logoed, reflective tape. A parade float. And a small group of volunteers. That was all I needed to get rolling on a journey toward justice that hasn’t stopped since.

Soon I was organizing classes to help people stop smoking and to learn about nutrition and exercise. I felt sure that at some point keeping our hospital’s not-for-profit status would require more. Turning at least a little of our attention away from being a high priced repair shop for when things went wrong to addressing health issues before people needed pills or stitches seemed reasonable enough. Necessary even.

Though naive in those early years, I was also sincere. The purpose in this work was plain as day. I was not going to let the obvious gaps in needs go unchallenged.

At it’s most basic level, looking upstream demands a simple question – What would it take for this problem to never happen again?

Imagine you’re walking along a river one day and see someone nearly drowning. You reach out to save them and realize there’s another coming along right behind them. You pull that one to safety, too, but there are more. They keep coming, and you have no choice but to continue helping save these unfortunate souls. But they keep coming. There are so many people coming downstream, you have to do more. You set up ropes and other devices and soon you’ve recruited others to help save the victims coming downstream. Eventually, to support your operation you begin charging for your services. You even construct a facility on the river bank to care for these lives.

Meanwhile, no one bothers to venture upstream to find out why so many people are falling into the river. Besides, the river keeps bringing you new victims and new revenue. Patients. To look upstream is to intentionally explore the causes of human suffering, to endeavor to understand the root causes, and to learn what we can do differently to create a safer, healthier, more just world.

It wasn’t until 2010 that my early 90s prediction the healthcare regulatory environment would change finally arrived via the Affordable Care Act. It came in the form of an IRS requirement for hospitals to research, write, and publish every three years a Community Health Needs Assessment and Implementation Plan (CHNA).

As in most rural health systems, that job landed in the lap of Marketing. I was glad it did, for the process helped me learn and grow. For a good many years now, this all-too-often toothless task -- though enormously thought-provoking, tremendously educational, and often even personally gratifying – was for most organizations little more than a box to be checked on an IRS form. Nevertheless, I took it as seriously as a cancer diagnosis. The realities of life for people in our communities weighed heavy on my heart.

My trigger had been tripped. I dove into self-educating on morbidity and mortality, on the plague of chronic illness, and on the common afflictions wreaking havoc on so many lives. I did the work required of me, but I always did more, too. That yawning gap of need begged my brain for attention. I studied, learned, organized. lobbied, and pushed. I began filling gaps as best I could, some of them by presenting classes myself, leading community groups, and creating programs. Intrinsic motivations within me were uncaged. Logically, I was also positioning the brand of my community health system as the one who really cared.

Then, when my own father died of heart disease at 64, population health hit home hard. By that time I was out of healthcare, owned my own business, and was living in the Adirondacks, yet this work was my calling. I organized a local triathlon club and initiated talks with the local hospital about creating and leading a medical fitness program. I found my way back into healthcare full-time and put out more engaging outreach with things like supermarket tours and “Find Your Exercise Match: Speed-Dating with Healthy Activities.” My life experiences had hardwired in me a need to make a difference.

My father leading students across a stream at Great Sand Dunes National Park, Colorado.

My work also took on a decidedly analytical approach. I sought to de-code and drill down to root causes. I searched for ways to more effectively deliver inspiration for healthy behavior change. Through my research, I began to see everywhere the impacts of the social determinants of health, and I began to uncover the intolerable realities of health disparities. I continued to research and learn and write, including several CHNAs.

In 2015, coming out as transgender and beginning my transition sharpened my focus and informed my journey. With family, friends, colleagues, and entire rural communities witnessing my transformation I moved into a position of extreme vulnerability. It was then I began to experience for myself some of the pressures and prejudices others fought all their lives.

I soon partnered with a bias researcher and political science professor to look at CHNAs themselves, analyzing all those published by hospitals across Wisconsin to see what organizations reported any intentions at all of improving care and building cultural capacity to serve their LGBTQ communities. We presented findings and argued our case for reform to healthcare students, to the Rural Wisconsin Healthcare Cooperative and rural health marketing leaders responsible for writing CHNAs, to the Wisconsin Public Health Association, and my own health system. (See an abbreviated version published here in the Journal of Management Policy and Practice).

I came to a deeper understanding of the devastating power of the social determinants. I saw not only that their power was far greater than that of healthcare to counteract them but also understood more clearly how deep the wounds they inflicted went and what made them so often fatal. Their effects were greater than any political will or any current investment to counteract them. That status quo I cannot accept.

To put it in more discernable terms, imagine a “subway map” view of life expectancy, one that displays the average life span of people who reside in the various neighborhoods along a subway or train route through a city. On the short trip from midtown Manhattan to the South Bronx, life expectancy dives 10 years. That’s six full months for every minute on that train. Or take a look from the Chicago Loop to the west side, and see an even greater difference – 16 years.

Shockingly, there exists no technology or miracle medical intervention that could duplicate that effect in reverse. If one could wave a wand and completely eradicate heart disease, life expectancy of Americans would only improve by four years, far short of the effect of social determinants in Chicagoland.

The status quo is an obstinate and unbearable beast I’m here to kill. Besides amplifying the voices of reason, what’s required to make an impact is investments in people and lasting change at the systems and cultural levels, including implicit and structural bias. Only changes in the current power dynamic combined with well-conceived strategy and here-to-fore unrealized creativity will ever slay that monster.

This is a life-long journey for me. Learning, discovering, uncovering, writing, speaking up, organizing, and advocating. That things are slow to change is no reason to stop. It’s a wicked problem, and I do not shy away from wicked problems. I’m here for the duration, and I’m more hopeful and excited about it all today because I finally have all the tools and skills to truly make a difference. Science and knowledge can guide change, but they don’t produce it. That requires committed, engaged humans acting in the interests of their fellow humans, and often too, doing what’s never before been done. Justice is not a part of my career. It’s my calling.

My father, Charles W. Collins, at Yellowstone National Park, Wyoming. For decades he led groups of students on field trips through the western states, camping and backpacking and learning geomorphology and geology along the way. I was a privileged student to have gone with him on many of these trips. Tragically, a genetic pre-disposition to heart disease aggravated by a lifetime of the disease-inducing food caught up with him, and he died of a heart attack in 2002. The world deserved more of him.