October 6, 2017
Eleven years ago, Karen DiVito was a mother of three when she was diagnosed with breast cancer. For the first time in her life, she had to wrestle with a devastating realization: “I might not be the one raising my children.”
Though DiVito’s oncologist helped her beat cancer, she was left wondering whether it would come back. This question pushed her to dive headfirst into all of the cancer research she could get her hands on. Although she was thankful for the work her oncologist had performed, she realized she wanted an oncologist who was also a researcher, someone who was always on the cutting edge of progress.
Because of her passion for cancer research, she was eventually introduced to Dr. Carola Neumann at Magee-Womens Research Institute (MWRI) in 2014. Soon after, DiVito joined a small group for breast cancer survivor/advocates originally formed by Dr. Nancy Davidson and Dr. Priscilla McAuliffe, and attended by Dr. Neumann – the Breast Cancer Research Advocacy Network (BCRAN).
Since then, BCRAN has grown considerably, even doubling its numbers in the last year. Thanks to its connection with MWRI, both patients and researchers are benefiting.
The Relationship Between Researchers and Patients
Steffi Oesterreich, PhD, an MWRI researcher focused on hormone action in breast cancer, wholeheartedly believes in the value of maintaining a dialog between patients and researchers. “It’s important for us to talk to people,” says Dr. Oesterreich, who, with Dr. Neumann and Dr. McAuliffe, is a member of the Women’s Cancer Research Center, a collaboration between MWRI and the UPMC Hillman Cancer Center. “We don’t get to see patients all the time like clinicians do.” Meeting with patients regularly fuels Dr. Oesterreich and her team. “They keep pushing us forward. We meet with them once a month and they tell us, ‘We rely on you.’ That kind of relationship is rewarding and inspiring.”
The constant communication between researchers and patients sometimes inspires the direction researchers take. “These conversations constantly remind us about the most important things affecting patients,” says Dr. Oesterreich. “Our research has changed and grown over the last three or four years because of those conversations about cancer.”
Advocacy also influences the grants researchers are awarded, says Dr. Neumann. Advocates can point out to researchers when they’re pursuing something that isn’t worthwhile. When necessary, they’ll help guide research by pointing out when a treatment is outdated or has terrible side-effects.
While MWRI researchers are engaged in their labs, DiVito and her team of advocates keep busy. They work closely with researchers on the written sections of their projects to make them more accessible. In some cases, the advocates assist researchers with their lay abstracts—plain English summaries—for their grants to ensure they’re understandable to the average reader. In addition, DiVito and her team help researchers with writing pamphlets about cancer to ensure they answer the right questions for patients. They’re even on hand to develop more comprehensive surveys that ultimately result in a better understanding of how communities discuss cancer.
Before BCRAN’s monthly meetings with Dr. Neumann, everyone receives a copy of researcher-written literature to be reviewed during the meeting. Each member reads the literature closely and takes copious notes, marking wherever something is unclear and where a different viewpoint can be beneficial. Thanks to their experience as survivors, they provide a perspective a researcher doesn’t always have.
Perhaps even more importantly, BCRAN works to connect researchers with patients for clinical trials. Clinical trials often suffer from low participation rates because of a variety of barriers, including financial costs, fear, and lack of information. BCRAN hopes to increase participation through outreach and education by notifying other advocacy organizations, attending local events, and reaching out to local support groups. “Without studies that can prove or disprove a different therapy or technology, it can be difficult to advance science,” says DiVito. “There could be a drug that is the next best thing but it sits on a shelf because not enough patients enrolled.”
BCRAN also works hard to serve underrepresented communities and minorities, who often have a lot of fear and mistrust when it comes to clinical trials. However, connecting with these groups is important, says Dr. Neumann, as they often experience different, more aggressive forms of cancer. The advocacy group has formed a relationship with the Urban League to reach out to more people in this demographic.
When BCRAN isn’t meeting with researchers or planning community events, it and its sister organizations focus in on peer-to-peer sessions with breast cancer patients. Especially right after being diagnosed, many patients have mountains of overwhelming questions to sort through. The peer-to-peer sessions give each patient a chance to sit down with an informed, experienced advocate who can guide them through the treatment process. Because they’re talking with someone who’s experienced cancer firsthand, there’s a special level of trust that isn’t always felt towards doctors.
Thanks to the relationships between advocates and researchers, MWRI is driving research in new directions that are focused on increasing survival rates and eliminating cancer altogether.
To help MWRI continue its research and patient advocacy, make a donation. If you’d like to get more information about clinical trials, contact BCRAN by emailing them at BreastAndGyneTrials@upmc.edu. With your contribution, researchers can push forward in their patient-inspired work.