Communication and the Cooperative Groups

Don S. Dizon and Wendy Lawton

 

One of the things I enjoy in my professional life is meeting new people, especially when our paths cross in ways not entirely envisioned. Most of that has happened on Twitter and other social media platforms (where I refer to those folks as twiends). As attention is rightfully paid to clinician burnout and as colleagues across the country are faced with the challenges of cancer care in a pandemic, seeing the opportunities to “cross-pollinate” with others outside of your area of expertise or practice has always been something that sustained me. Indeed, some of the most gratifying professional relationships have come out of the cooperative groups.

I still remember being a young faculty member (yup—dating myself, I know) and wondering how I could get more involved. Folks like Carol Aghajanian and David Spriggs at Memorial Sloan-Kettering, Gini Fleming from Chicago and Paula Fracasso from Washington University at St. Louis took time to sit down with me and give me advice, provide opportunities, and to open doors. Working with the cooperative groups was also the first time I’d ever seen people impacted by cancer sitting at the proverbial “table,” asked for their advice about clinical trial proposals, and valued as voting members of the committee. All while I sat in the audience, wondering aloud, “When will I be able to sit there?”

Those early impressions—and the people who mentored me along the way—have stayed with me. For me, the cooperative groups have always been the place to learn, both about the emerging science and treatment landscapes and also, more from each other: clinicians, people with cancer, patient advocates. I have met so many and have found tremendous value in these interactions. As SWOG Cancer Research Network meets this week, I decided to learn more about someone who has morphed from colleague to friend, Wendy Lawton, communications manager extraordinaire for SWOG. She and I were thrown together when Charles Blanke invited me to lead a nascent committee – Digital Engagement. I can honestly say, I learned (and continue to learn) much about the topic from Wendy, and along the way, have gotten to know her as a person.

I remember when I first met her, she struck an imposing presence: media savvy, multi-tasker, big thinker. I knew she didn’t come from a cancer training background, and wondered: Why cancer? Why SWOG?

After working as a newspaper reporter for a decade, I moved into science writing at Brown University,” she said. “At Brown, working in the office of media relations, I publicized biology, medicine, and public health for four years. I went on to raise money for research at Brown and at Rhode Island’s largest hospital system. That grounding in the basics of human biology, medicine, and clinical and basic research – learning deeply about genetics, immunology, biochemistry, and research design and methodology – made the move to oncology easy and practical.

The work we do at SWOG led to efforts aimed at nurturing bidirectional communication tools as a legitimate means to help revolutionize clinical trials. Part of it has been a deep investment in social media. Wendy grew SWOG’s presence on Twitter, from about 1,000 to nearly 10,000 followers in only a few years, and steered us toward developing efforts to train SWOG members on using Twitter. Still, potential present for the professional use of social media in the oncology space has yet to be realized. I asked her what, in her opinion, is the thing holding others back.

Time is the biggest barrier. Like so many medical professionals, cancer physicians, scientists, nurses and others feel they don’t have the time to create another password, learn a new app, and devote more of their day to work. I really get it. People need to be convinced that the extra effort is worthwhile. Because it is! There is an incredibly robust cancer research community working together right now on Twitter, one that can help people do better work on behalf of cancer patients. We’re seeing groups like OncoAlert form on Twitter that share news and connect people worldwide in cancer research. It’s gratifying.

I briefly mentioned the pandemic earlier, but it’s clear it’s having a profound impact on the cancer community. From my vantage, I have had several conversations with younger clinicians whose perspectives of career, family, and personal goals are in conflict more than ever. As examples, it’s the young parent who has been forced to be home a few days a week to homeschool their kids, who realizes just how much they actually enjoy being there, wondering if they can ever go back to status quo. It’s also the more seasoned clinician who is frustrated by the masks and the virtual visits, unable to touch the people undergoing treatment who is seeing the loss of the art of medicine. More relevant to our efforts in SWOG, it is also the investigators who have had to accept the delays—or cancellations­—of trials, and the reduced numbers of volunteers. I wonder what’s changed the most during COVID-19?

The pandemic simply amplified challenges and opportunities in our systems. The biggest challenge highlighted is the extreme and deadly nature of health disparities in America. Some people get sicker and die more often – of COVID and cancer – than others due to a variety of factors, from systemic racism to lack of economic opportunity. But we can control our systems. We can remake them. The biggest opportunity the pandemic has given us is to see we can change – and do it quickly. In just a couple of weeks, the National Cancer Institute made major allowances for telemedicine, shipment of drugs to patients, and other changes to help make it easier to put and keep patients on trials. At SWOG, we’re coming up with recommendations on how to improve our trials after the pandemic ends. That task force won’t report out until March, but I expect that the recommendations would make our trials move faster and allow more people to join. We just need the NCI, FDA, and insurers to buy in.

I agree that we are in a “forced acceleration” of change, particularly in the way cooperative groups run clinical trials. Adaptation requires change, and change can be hard. What’s one thing that the research community can work on today, that has the potential to change the way we run clinical trials, and carry forward as we look in to the future?

We have to speak, write, and talk about trials in plain language. Cancer clinical trials are not explained in ways most people can understand, and if someone can’t understand a trial, they won’t join it. Any organization that gets federal HHS funds is mandated, by federal law, to write in plain language. I believe we’re morally obligated to do so as well. Talking to everyone with cancer in ways they can understand about a potentially life-saving course of treatment is the right thing to do. And it’s the smart thing to do. We’d get trial enrollment goals reached sooner, and get new treatments out to patients faster.

The work in digital engagement continues, and it’s been accelerated due to COVID-19. I cannot wait to see where we go next!

 


 

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