Fall 2013 
 

Stanton L. Gerson, MD, is director of the Case Comprehensive Cancer Center, in Cleveland.


Commentary Overview

* A newspaper series helped raise awareness about a cancer center and its clinical trials

* Communities care about clinical research but often know little about it. Engaging media provides an avenue for education

* Greater access to the cancer center, staff and patients can lead to more thorough reporting and more powerful stories

* The better the public understands the impact of NCI-funded research the greater its willingness to support additional investments
About AACI Commentary

As part of AACI's efforts to promote the work of its member centers to both general audiences and the cancer research community, AACI has launched AACI Commentary, a quarterly editorial series. Written by cancer center leaders, each edition will focus on a major issue of common interest to the nation's cancer centers.



Making the Most of Media Coverage: The Case Comprehensive Cancer Center Experience

BY STANTON L. GERSON, MD

After three years, the 70-year-old cancer patient had exhausted every traditional treatment option.

The physicians gathered around her hospital bed, explaining potential risks and benefits of another approach. She had qualified for a clinical trial that combined two medications one of which had not yet won approval for her kinds of tumors. She asks questions. Her husband asks more. And then, she decides.

"[She] wants her life back.

She signs the consent form."


This scene appeared in the final paragraphs of a feature story in our local newspaper, The Plain Dealer, about clinical trials one of 18 stories that appeared in April 2013, in a series called "Clues to Cancer". The articles raised awareness of the Case Comprehensive Cancer Center in our community, prompted extensive praise of our members and brave patients, and contributed to a 20 percent increase in year-to-year clinical trial accruals.

This commentary will explain the process of creating the series, lessons learned from the experience, and the value such an effort can bring to your community and your cancer center. In short, our media engagement yielded the results we sought when we first approached the newspaper more than a year ago. But it was not without risk, nor an enormous investment of time and trust on the part of dozens of cancer center members, patients and their families.

Cleveland is a working-class city with a broad range of ethnic backgrounds, strong labor unions, and a fairly stable, older demographic. Its economy is transitioning from manufacturing to medicine, and two of the region's top employers are Cleveland Clinic and University Hospitals (UH), sites of the Clinic's Taussig Cancer Institute, led by Brian Bolwell, MD, and UH's Seidman Cancer Center, where I serve as director. Case Western Reserve University is the home of the National Cancer Institute-designated Case Comprehensive Cancer Center (Case CCC), which I also lead. CaseCCC works together with Seidman and Taussig to coordinate cancer research including coordination of all clinical trials for the entire region.

Because of the region's highly consolidated health care, Case CCC oversees nearly 70 percent of the cancer cases among Northern Ohio's four million residents. Despite this primary role in cancer treatment and research, we often have struggled to secure attention from local media about the role of clinical research in cancer care and the role of Case CCC in providing the platform for this good work. Part of the responsibility was ours we had not taken the time to tell our stories in cohesive, comprehensive ways. But in a climate of increasing fiscal constraints and federal budget cuts, we recognized we needed to redouble our efforts to educate the region regarding the significance of NCI designation and the center's overall benefit to patients.

Building a Relationship
With the support of UH leaders, we approached The Plain Dealer about doing a story focused on our work with cancer patients, specifically, those undergoing early phase clinical trials. The focus would be on NCI-funded N01 and U01 grant programs that Drs. Neal Meropol and Afshin Dowlati, respectively, lead.

We met with several editors and reporters, and ultimately agreed on an approach that allowed the journalists unprecedented access to patients, as well as to our own internal operations and meetings. The arrangement meant that we allowed a reporter to attend our Institutional Review Board, Protocol Review and Monitoring System and Data and Safety Monitoring Committee meetings, as well as our weekly Phase I clinical protocol review. The reporter, Angela Townsend, also spent time with physicians and research nurses and, after patients signed informed consent documents, she interviewed them and their families. In two instances, she observed first-in-human therapy administrations.

Townsend, her photographer and videographer spent 10 months on the project. Understandably, many of those involved felt wary; indeed, one doctor acknowledged that he worried about what would appear in print from the first day right through the series' conclusion. I myself spent many hours mediating "Are you kidding?" conversations with cancer center staff and working to ensure that we fully respected patient privacy rights and the proprietary processes of the organizations involved.

At the same time, we also aimed to build confidence and credibility with the newspaper and to provide the reporter with enough information and context to make what she wrote as comprehensive and objective as possible. Part of that engagement involved explaining the different organizations involved in the center, as well as NCI's crucial role in coordinating and funding activities across the country.

The Plain Dealer deserves enormous credit for recognizing the value of the opportunity and giving its team the time required to do it justice. Over the weeks and months, our respective admiration for one another's work deepened. The published articles demonstrated the diligence and judgment the reporter applied to learning about the complex world of clinical trials, and at the same time presented the stories in a way that evoked empathy and appreciation for patients and caregivers. She showed doctors and patients talking together about potential trials, captured the excitement of first dosages, and detailed the despair when even experimental efforts fail. She highlighted the compassion and commitment of our doctors, and also spoke with outside experts such as Dr. Jamie Zwiebel of NCI's Cancer Therapy Evaluation Program and Dr. Patricia LoRusso, who leads the Phase I program at Karmanos Cancer Institute, in Detroit. Angela captured the humanity, the personal struggles, and the front line issues confronting our patients, their families, our physicians and research nurses.

The stories proved so popular that the newspaper published reprints and continues to carry the series prominently online. We saw hundreds of tweets and Facebook posts, and many of us still receive positive comments about the articles. Perhaps most important, the newspaper's project gave readers an up-close view of the experience of clinical trials, a phrase often used but little understood outside our own walls.

In addition, the paper now grasps that the hospital-based programs emanate from the NCI-designated cancer center. For example, in one article the reporter noted that, "UH is the lead institution for early-phase drug development at Case Comprehensive Cancer Center, a collaboration of institutions based at Case Western Reserve University that also includes the Cleveland Clinic. Last year, UH placed 89 patients in 16 Phase 1 studies."

We now can work with the media to point out the many collaborative efforts across the institutions of the Case CCC and to serve as a source for expert opinion on cancer medical issues. This summer the newspaper published a thorough story about our NCI designation grant renewal, a piece that probably would not have been nearly so complete or prominently featured without the series' context. The newspaper also has published editorials about cancer clinical trials since the series.

Similarly, our faculty and staff appreciate the media and its integrity far more, and also recognize the advantages that their reporting can bring to our own work.

Lessons Learned
Lessons to be drawn from our experience include:

1. Communities care about clinical research but often know little about it. Engaging media provides an avenue to educate and raise awareness.

2. Greater access can lead to more thorough reporting and more powerful stories. Be open: Show them your results and build your own story.

3. Embedding a reporter in your center carries risks, but thorough conversations in advance about legal and ethical restrictions, along with shared expectations about goals, can alleviate some of these concerns. Ongoing conversations during reporting can alleviate others.

4. The better the public understands the impact of NCI-funded research, especially that which takes place across institutions, the greater its willingness to support additional investments. This popular support can translate to political influence when members of Congress vote on appropriations.

I encourage every cancer center to read the series about Case and consider ways to engage media and stoke their interest in your work. News organizations, communities and cancer centers will benefit. Who knows? Enough momentum might build that the next debate about cancer funding will be about how much more to allocate to our efforts to defeat cancer.


 
Representing 95 of the nation's premier academic and free-standing cancer research centers, the Association of American Cancer Institutes is dedicated to promoting leading research institutions' efforts to eradicate cancer through a comprehensive and multidisciplinary program of cancer research, treatment, patient care, prevention, education and community outreach.