Q&A: Giving voice to patients navigating cancer, rare disease, and more

Health care is about many things — understanding and treating disease, practicing medicine, developing new drugs, inventing new medical devices. But at its core, it is about one thing only: the patients.

A STAT Report released Tuesday, “Patients speak out: learning about health care first-person,” brings those voices to readers in a collection of essays originally published as First Opinion columns. 

In the report, as First Opinion editor Torie Bosch notes in a foreword, “the authors write about their experiences: as patients, as family members, as clinical trial participants. Those experiences vary enormously, but they all offer some lessons that can help regulators, health care professionals, drug developers, and others set priorities, center the patient, and perhaps improve outcomes.”

Bosch joined STAT in March 2023, taking over the opinion column from Pat Skerrett, who was retiring. Since its inception, First Opinion has become the premier forum for first-person essays and perspectives on health, medicine, and the life sciences, written by everyone from top government officials to physicians, academics, and patients.

Bosch said that when she looked through the essays collected in the report, she was struck by the breadth of subjects and authors. “We have Michael J. Fox, writing about the work his foundation has done in Parkinson’s research; a father on his son’s tragic opioid overdose; and so much in between,” she said. “The wide-ranging nature of the report offers a crucial reminder that, ultimately, everything in health care is about patients.”

We asked Bosch for her thoughts about the report and why hearing from patients is important. Here is an excerpt of that conversation.

Torie, as STAT’s First Opinion editor, you often include essays by patients in the mix of columns you run. Why are these first-person perspectives important?

In the life sciences, it’s easy to get caught up in numbers: in profits, in study results, in demographics. Since its earliest days under the wonderful Pat Skerrett, the First Opinion column has viewed the patient voice as absolutely critical to understanding medicine. Since Pat retired, I have doubled down on that approach. I think that hearing directly from patients both allows readers to connect to the humans in life sciences, and reminds people who work within the field that their jobs affect people’s lives. (Maybe we should call it lives sciences!)

When you think about the 11 essays collected in this special report, what are some of the problems or inequalities in the health care system they highlight?

There are so many themes that run throughout this report! I think the biggest one is a sense of impotence: that patients often feel frustrated, powerless, unheard, overlooked. That might be because of systemic inequalities, as with LaQuayia Goldring’s heartbreaking, enraging essay about how the organ procurement system has failed people of color like her, or because of a lack of personal touch, as in Dorothy Pomerantz’s First Opinion about her experience with 23andMe, in which she learned bad news about her health from a cold email.

Is there one particular essay by a patient that you personally found very moving or that got to you in some way? If so, what was it about it that affected you?

I can’t tell you how many times I cried or nearly cried while editing Sarah McCarthy’s essay about her daughter Molly. McCarthy is a pediatric psychologist who often works in PICUs, but in a brutal role reversal, she found herself the parent of a PICU child. Molly was 5 when she was admitted to the PICU, where she stayed for 49 days before dying of complications of cancer. McCarthy writes about the astounding displays of love and care her entire family experienced during Molly’s PICU hospitalization, as demonstrated by the nurses’ decision to embrace a continuous care approach. That meant Molly, and the rest of the family, could see the same providers over and over, offering a sense of community and consistency during a terrible time in their lives. I wish this essay could be mandatory reading at all PICUs. 

Several of the essay authors in the report have a dual role: They work in the health care system, but they also have been “in” the system, as a patient, as a parent with a sick child, or in some other capacity. Do you think that duality adds to their perspective? 

Absolutely. I think that the health care system can wear down even the most empathetic health care provider’s ability to connect with patients. A role reversal offers them a new perspective and can jolt them out of their habits. 

What advice would you give to someone who might want to write about their own experience for your column? 

I think the most important thing is to figure out your major takeaway. “I want to write about my experience with breast cancer” is very vague; “Here’s a particular thing that my experience with breast cancer taught me” is quite different. Every First Opinion should have a sharp, strong, fresh idea at its heart, so focus on what surprised you about your experience, what surprises other people when you talk to them about it, and what you think the takeaway might be. And you should be able to summarize that takeaway in just a couple of sentences!