Yesterday I picked seven-year-old TD up from summer camp and was greeted by a counselor who gave me the following report…

Um, I’d like to talk to you about TD today. We had to talk to her because apparently she and a friend were spelling out bad words in the pool. I think it was the B word, the “F word,” the “S word, ” and the “H word.”

To which I felt the urge to query

Did she at least spell them correctly?

Those -tch and -ck words can be tricky, after all! If she got those right, she must be retaining something from first grade over the summer!

Way to make your mama proud, TD!

This morning I was sailing through the Twitterverse and saw a thread of tweets that caught my eye. I’ve been thinking about it all day. That usually means I need to write something.

I really had a lot of feels about it, both because I wholeheartedly agreed with it and also felt uneasy about it.

The feelings of unease came from my recent forays into cancer research. I began collaborating with Strange a few years ago because I was inspired by his stories. He’d talk about the gaps in our knowledge that translate to gaps in patient care. As an outsider, I felt like I might be able to look at some of these problems with a fresh perspective and add something new. It’s been a very satisfying journey, both intellectually and from the perspective that I can see that my work is going to help people. I’ve reached a point in my career where that’s really important to me.

I’ve always done clinical research and I have always tried to understand the actual mechanics of patient care. As a postdoc, my primary mentor was a pediatric intensivist and I would go to the pediatric ICU whenever I could. As a faculty member, I attend clinical research conferences and conferences where patient care is discussed. I manage a program in our cancer center to bank patient samples and clinical data, and I have spoken to patient groups about our work. All of this has been important in giving my work perspective and motivation. I don’t know if I would have been as successful as I have been without having been given the opportunities to see how the sausage is made. But, that’s me and what I find motivating.

So, where does the uneasiness come from? It comes from the fact that different things motivate different people. There’s a reason many become scientists and not “real doctors”…or “physicians,” as Strange likes to remind me. Patient care is about more than physiology and pharmacy.  Patients engage the medical system, not as bags of molecules, base pairs, and phosphorylation signals, but as sentient people who may be in the middle of the most challenging ordeal that they’ll ever face. They have complicated social situations, and emotions and fears, and people who practice medicine are more than mechanics. They deal with the social, physiological, and psychological in each interaction. As scientists, most of us are only trained in a single dimension. We may have the tools to understand the biochemistry, but not necessarily to deal with the mark that these interactions would leave on us.

I’ve been fortunate that my training has contained clinical elements and that I am now able to translate these into a clinical program, but that doesn’t mean even simple patient interactions are easy.  Several months ago, a physician colleague contacted me about an unusual cancer patient situation to see if I could offer insight based on the physiology. I felt proud that I could say, “I think this is a classic presentation of blah, blah, blabbity blah, blah of the lungs” and I turned out to be correct.

I thought it was such an interesting problem that I contacted other colleagues to write a case report with me, to explain the physiology to other clinicians who might encounter the problem.  I went through our IRB and then contacted the patient’s wife to facilitate consent. She was amazing.  She and her husband were enthusiastic that his ordeal could be used to help future patients. Through this case study, I’ve remained connected to her…and, therefore, had a front-row seat to her husband’s extremely prolonged hospital stay, worsening of his condition, increasing intensity of intervention, and eventual death.  I’ve had access to her grieving. It left a mark on my heart and I cried when she lost her husband. While I am very happy to be doing patient-centered research, I don’t know that it’s crucial to have made a personal connection with an individual or walked with someone’s pain to be a good researcher. As an outsider to the healthcare system, one doesn’t necessarily have access to the training and resources that clinical colleagues have to deal with experiencing that pain.

The real source of the uneasiness is, after thinking through my own experiences and writing too long of a post, if interacting with patients in the clinic is important for scientists to gain perspective into what patients are experiencing, what tools do we need to give those scientists to deal with the impact of what they experience?

I might be rambling at this point. So, back to the original tweet where the lovely poster advocated for a “Bring a cancer scientist to treatment day”. Patient advocates, stories, and groups give us incredible perspectives, but that’s different than seeing someone receiving treatment in the clinic.  There is a very important role for patients in setting research priorities, but I think there are reasons that some people choose the bench and not the bedside in order to do their helping.  It’s ok to want that “in the moment” perspective if it drives your research. And, it’s ok not to want it.

I really empathized with the poster’s thought that scientists should understand what patients go through in their treatment and I hope that we can keep working with patients to open multiple avenues for patients to become involved in our research and share their experiences. I think the entire enterprise will benefit if we each do a better job of engaging patients, and that’s the real call I heard from people who replied to the thread.

We can always do a better job of communicating with patients about what we’re accomplishing. That’s something I’m working on myself.  The enterprise will benefit if some of us are engaging our clinical colleagues more. The enterprise will benefit if we’re working with patients to lobby congress. Some people will benefit from direct clinical, patient interaction and we should be supportive of that by making sure researchers and patients have the resources they need to facilitate these interactions. Patients should be involved in setting research priorities and helping us identify gaps in our work that are important to them. Different scientists are going to be better suited to work in each of these spheres, but I have no doubt that the biggest advances come when we work together.