Co-Creating Research: Report From A PCORI Meeting Of Citizen Scientists and Radiologists

Radiologists are in many ways the unsung heroes of cancer treatment. PET scans, MRIs, and CTs are often the way that cancer is initially identified, and are also one of the ways that treatment progress is measured. Those hardworking members of the American College of Radiology (ACR) slave away in dark rooms, looking deep into the images that looked deep into a patient’s body, looking for the signs that say, “we got it all” and (a personal favorite), “no evidence of disease.”

Radiologists: Not Just Darkroom Dwellers Anymore

So imagine my surprise as, over the last several years, I discovered that radiologists are not only aces at finding small things that lead to big life events, but they also really want to hear from, and work with, patient activists to improve diagnosis and treatment of cancer, and other diseases.

My first clue was being invited to one of the monthly #JACR chats back in 2013, which I co-hosted with Dr. Geraldine McGinty, a radiologist and power Tweeter who’s a physician leader at Weill Cornell Medical Center in New York. That was followed quickly by the opportunity to weigh in, for their YouTube channel, on how to deal with “difficult” patients. Since my radiation oncologist tagged me as “difficult” when I was being treated for breast cancer, I have some inside knowledge on that topic.

I soon found myself having all sorts of terrific conversations with the smart people from the radiology community—there are LOTS of them!—and soaking up insight and knowledge at light speed. These folks are passionate about sharing information, making them great partners for participatory medicine and patient advocacy.

Illuminating Advocacy

Dr. Ruth Carlos, a professor of radiology at the University of Michigan, was one of those smart people I found myself learning things from on Twitter. ACR hosted a hackathon ahead of their annual meeting in 2016, and I was one of the lucky patient voices asked to attend the event and mentor teams looking at creating apps to improve access to journal articles for both patients and clinical teams.

Last fall, I fielded another invitation from Dr. Carlos, this time to participate in a workgroup for a Patient Centered Outcomes Research Institute Comparative Effectiveness Research (PCORI CER) project looking at four phases of CER study in breast cancer imaging, with the official title of “Defining a Roadmap for Patient Engagement in Imaging CER.” The purpose of the project is to have an all-stakeholder discussion about four phases of comparative effectiveness research, using existing research studies as the framework for that discussion. Workshop attendees were split into four working groups:

  • Group 1: CER Concept Development
  • Group 2: Trial Implementation
  • Group 3: Data Analysis and Interpretation
  • Group 4: Trial Results Dissemination

You might be thinking that the four groups line up with the four phases of research studies, and you would be correct in that thinking. Each of the groups–I was in Group 3, for those keeping score at home–was given a study related to breast imaging, and tasked with working through the structure and process of it with an eye toward improving patient-centeredness, shared decision making, and decisional satisfaction post-event. Our work centered on a study aimed at estimating the proportion of patients with DCIS (Ductal Carcinoma In Situ breast cancer) who are eligible for breast conservation surgery, but elect mastectomy based on breast MRI findings

I’ll admit I totally geeked out (technical term) at the invitation, and then became a human glitter bomb—figuratively speaking, at least—when I arrived for the two-day workshop at ACR’s headquarters in Reston, Virginia.

The number of patient voices in the room was heartening. There was Mary Lou Smith, a co-founder of Research Action Network; Stacey Vura Tinianov, who brings the patient perspective to collaborative education programs; Sanford Jeames, an educator dedicated to community health literacy; and the amazing/inspiring Linnea Olson, who gets a closeup a little further down the page.


Of particular note here is that those of us who represent the patient voice in healthcare can wind up relegated to token status—a room full of scores, or hundreds, of people with MD and PhD after their names and only one or two of us—or kept in a patient play-pen, only trotted out to look pitiful or heroic (sometimes both) while some eminence in a white coat holds forth. This was not the case at this meeting, this was many people with deep personal experience of cancer on an equal footing with leading research minds, all working together to create better frameworks for participatory research, and better care for cancer patients across the board.

Leading By Example

When it comes to beating the odds, you can’t beat Linnea Olson. “Outliving Lung Cancer” is the title of her blog, and she walks her talk—she’s been living with Stage IV lung cancer for twelve years. “Clinical trials have kept me alive,” is her answer to questions about how she keeps beating the #1 cause of cancer deaths.

Meeting Linnea after following her story for a while was the bonus round of attending that ACR PCORI CER workshop in February. I have friends, including Janet Freeman-Daily, who are living with metastatic lung cancer; I also have friends who are living with metastatic breast and prostate cancer. None of them were at this workshop, but all of them are still beating the odds thanks to precision medicine, and a commitment to science in service of defeating disease.

Making co-creation real, rather than a shiny object or a “nice to have” checklist item, in medical research and medical care, takes actual collaborative work across all stakeholder groups. There are few power player groups in medicine that grasp that, but based on my direct experience, the American College of Radiology and its members have not only grasped the concept, but they’re building science and research that has co-creation as a foundational principle. Science is what makes up the evidence in evidence-based medicine. Getting people—the ones commonly called “patients”—involved in that process of scientific discovery is co-creation at its most promising.

Co-creating and participatory/citizen science are the principal reasons I joined the Precision Medicine Advocates team at Cure Forward—science holds the answers to the “big questions” about human life and human health. Helping drive that forward is my mission. Count me in.

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Casey Quinlan Precision Medicine Advocate

Casey Quinlan Precision Medicine Advocate

Casey Quinlan covered her share of medical stories as a TV news field producer, then got a breast cancer diagnosis five days before Christmas in 2007. She used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy.Her speaking calendar for 2016 includes Academy Health’s National Health Policy Conference, the 7th Patient Engagement, Education and Adherence Summit, the ePharma Summit, the Genetic Alliance’s Building Trustworthiness in PCORnet meeting, and Health Datapalooza.
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