Theresa’s Research Foundation is excited to announce a new manuscript titled “Improving the Odds Together: A Framework for Breast Cancer Research Scientists to Include Patient Advocates in their Research” published today in npj Breast.
An appreciation for the value of including the patient advocate voice in cancer research has increased in recent years, however, basic research scientists are often uncertain about how to establish or maintain relationships with advocates. The manuscript describes these barriers and provides potential solutions including short- and long-term goals to overcome these challenges.
“When scientists partner with patient advocates, real experiences of people living with cancer inform the work at every step, rather than being an afterthought. Patients are scientists’ biggest champions – no one wants the work to succeed as much as we do. Our lives literally depend on it!“ commented Julia Maues, patient advocate and co-founder of GRASP.
“As someone who has worked with patient advocates for many years now, I’m very passionate about how patients can influence research and how much we can teach each other about how to advance progress against cancer,” said Alana Welm, PhD, Professor and Senior Director of Basic Science at the Huntsman Cancer Institute at the University of Utah.
In the summer of 2021, Theresa’s Research Foundation hosted a virtual roundtable to identify opportunities to improve relationships between researchers and advocates, then presented findings during the 8th Annual Metastatic Breast Cancer Research Conference in the fall of 2021. The conference included patient advocates and research scientists who provided additional feedback. Findings from these discussions were compiled into the manuscript, which is co-authored by researchers and advocates.
“Many of the research scientists in our group who work with advocates have a more patient-centric approach that helps focus their research and improve their communication skills. Our hope is that the findings in the manuscript will encourage more basic research scientists to work with patient advocates to improve cancer research and patient outcomes,” said Hillary Stires, PhD, Science Policy Analyst at Friends of Cancer Research.
About Theresa’s Research Foundation
The mission of Theresa’s Research Foundation is to specifically fund research for metastatic breast cancer that provides better treatment options, improves quality of life for patients and will one day lead to a cure. Each year, the organization hosts the Metastatic Breast Cancer Research Conference hosted in collaboration with Lester and Sue Smith Breast Center at Baylor College of Medicine and the University of Utah Huntsman Cancer Institute to bring together a diverse audience to create a collaborative research environment with a long term goal of developing curative approaches for metastatic breast cancer. To register for the 2022 event, visit https://na.eventscloud.com/ehome/index.php?eventid=676621&. To learn more about the work of Theresa’s Research Foundation, visit http://www.theresasresearch.org.