This section was reviewed and updated by the contributors, 01/2019
Clinical trials are studies that help doctors find better treatments and ways to prevent cancer and other diseases. These studies require participation of patients, patient advocates, and health care professionals. To better understand how patient advocates and doctors work together to advance cancer research, Lineagotica spoke with George W. Sledge Jr., MD, former President of the American Society of Clinical Oncology, and Mary Lou Smith, a longtime patient advocate. Dr. Sledge and Ms. Smith have worked together for many years, primarily through the ECOG-ACRIN Cancer Research Group, a clinical cancer research organization.
Q: What are the shared goals of cancer researchers and patient advocates?
Dr. George Sledge (GS): There are several common goals. First and foremost is the conquest of cancer, a life-threatening disease. A secondary goal that supports the first is the advancement of the policies and processes involved in cancer research that will make those cures possible. And advocates have been strong voices for that research infrastructure.
Mary Lou Smith (MLS): To expand upon those themes, cancer researchers and patient advocates share the goal of answering questions that improve patient care, quality of life, and cancer survivorship. In addition, both parties seek to ensure that clinical studies are well-designed and ethical, reducing patient burdens.
Q: What role do patient advocates play in cancer research?
GS & MLS: Patient advocates have made, and will continue to make, numerous contributions. For example, they have played an important role in fundraising for cancer research. At a national level, patient advocates lobby Congress to give money to cancer and raise funds through philanthropic organizations. At the local level, there are many examples of advocates raising money for research at just about every cancer center in the country.
In addition, advocacy groups educate patients about various types of cancer, why clinical trials are important, where they can access clinical trials, and how they can maintain a good quality of life. In many of these areas, advocacy groups have led the way and have been a positive force for improvement.
An increasing number of advocates are also serving on the many advisory boards and committees related to cancer research. For example, the National Cancer Institute’s National Clinical Trials Network (NCTN) has advocates involved in their committees. In these settings, advocates bring the patient perspective to the planning and implementation of clinical studies. They participate in discussions about which research topics to pursue and suggest ways to reduce patient burdens in clinical trial protocols. They also help develop patient-friendly consent forms and educational materials, and reduce disparities in clinical trial participation by increasing awareness and using culturally appropriate materials and methods. The advocates also bring a certain level of urgency to the discussions, focusing on how research impacts the lives of real men and women down the road.
Q: How has the role of patient advocates in cancer research evolved?
GS: There was a time when researchers did not recognize how much advocates can contribute to scientific discussions. However, that has changed dramatically during the past decade. Advocates are increasingly considered a valuable and important part of the scientific peer-review process.
MLS: In addition to becoming an important part of the peer-review process, advocates are also working within the research programs. Advocacy representation is often required by the funding organization. This gives advocates the opportunity to understand the issues and represent the patient in a new way. The Research Advocacy Network, a non-profit organization that I co-founded, works to bring together all participants in the medical research process. As the head of the Advocacy Core for the Breast Cancer Center of Excellence at Indiana University, this organization led training programs, developed patient and advocate educational materials, and gathered feedback from the community to advance the research.
Q: What opportunities do you see to improve the relationship between cancer researchers and patient advocates?
GS: Despite the positive developments in the relationship between patient advocates and researchers in recent years, there is still room for education on both sides. Advocates can improve their knowledge of the scientific and clinical issues in cancer research so they can be well-prepared for discussions with researchers. Increasingly, advocacy groups have been working toward that end. For example, the National Breast Cancer Coalition has tapped top-level scientists to help advocates better understand the current areas of research and the science behind it. Going forward, having a scientific knowledge base will increase the importance of advocates to the process. Meanwhile, researchers need to recognize the value that advocates bring to the research and reach out to them as valuable allies in this fight against cancer.
MLS: Researchers and advocates should increasingly engage in joint problem-solving around key research issues. This includes boosting participation in clinical trials, improving participant informed consent, determining when tissue samples should be required, providing research results to participants, and educating the public and newly diagnosed patients about biospecimen research. Additional opportunities to work together include developing pilot programs to successfully share research results with the community and funding advocate initiatives that aim to enhance patient understanding of cancer research.
The Research Advocacy Network Advocate Institute runs a class each year to train advocates in the basics of cancer research, provides the experience of attending the ASCO Annual Meeting, and helps advocates share the research with patient groups in their community. Additionally, jointly-sponsored forums that discuss effective researcher-advocate collaboration can help identify best practices for future projects. For example, Research Advocacy Network has hosted “think tanks” to provide forums for discussing current issues in research.
Q: What advice would you give to patient advocates who want to contribute to cancer research?
MLS: I’d recommend the following:
Develop the long view. Change does not happen overnight.
Learn about the science so you can communicate effectively with the research community.
Learn how the system works and contribute to a successful change within that system.
Establish a trust relationship by demonstrating how you can support cancer research in a way that researchers value. If you are not sure what they would value, ask them.
Be a collaborator, which means listening to the other party's point of view, communicating effectively, checking for understanding, and making concessions. Each party gives a little to achieve the greater good.
Recognize that this is not a social enterprise. It is a research enterprise. As a result, do not feel discouraged if the researchers do not engage socially in the same way you may have experienced in other settings.
Above all, remember that it is not about you or your agenda. It is about finding answers for people with cancer.
About the contributors
George W. Sledge Jr., MD, is a clinician-scientist focusing on new treatments for breast cancer and the chief of oncology in the Stanford University’s Department of Medicine. He is also a former president of the American Society of Clinical Oncology.
Mary Lou Smith, JD, MBA, is the co-founder of the Research Advocacy Network. She currently serves as co-chair of the ECOG-ACRIN Cancer Research Group’s Cancer Research Advocacy Committee and on the boards of the National Accreditation Program for Breast Centers and Gateway for Cancer Research.