I was in a meeting recently, and a colleague discussed his conversation with a researcher. The researcher voiced his concerns about the involvement of patient advocates during the grant review process. He didn’t think patient advocates should be a part of the process because “they don’t understand the science, what incremental steps, or high impact means.”
After hearing this, I wondered how researchers felt about patient advocates participating in grant reviews. Furthermore, what can be done to alleviate concerns? Or be put in place to prevent further lack of knowledge?
My answer is simple: education. Education about the history of patient advocacy, how patient advocates are chosen for grant reviews, and other scientific spaces. Courses that discuss the many roles of patient advocates and why we are willing to come to the table.
Why Patient Advocates?
The push for patient advocacy was led by the need to include patient voices in policy and research. Now, as an established part of both, it is vital to widen the scope of the patient advocate.
Patient advocates are chiefly comprised of volunteers with an intimate and comprehensive understanding of a disease. Patient Advocates also meet requirements set by a government agency or organization.
The Importance of Inclusion
In The Oxford Textbook of Clinical Research, Rebecca Dresser discusses how patient advocacy has evolved since the early 1980s. HIV/AIDS activists sought and gained rights for patients. Without the commitment to change legislation regarding clinical trials, access to care, and unapproved or off-label medication use, the care many receive today wouldn’t exist.
Breast cancer activists used the lessons learned from the HIV/AIDS activists. Their work to have breast cancer patients represented in clinical trials led to the U.S. Department of Defense’s (DoD) Program for Breast Cancer Research. Since then, several U.S. government agencies have included patient advocates in discussions concerning several different types of research. For instance, the U.S. Food and Drug Administration has the Patient Engagement Collaborative (PEC). The National Cancer Institute has a Patient Advocacy program that offers several opportunities for patient advocates to help researchers understand the needs of cancer patients. One example is the NCI Technology Research Advocacy Partnership (NTRAP).
These programs allow patient advocates to voice their concerns and thoughts about cancer research and clinical trials. As a Patient Advocate with these programs, I have experienced how patient advocates’ insights create partnerships between researchers and patients. Both benefit from the partnerships because they acknowledge the needs and goals of the other.
Ethical Obligation to Patients
Those involved in patient advocacy are keenly aware of how our actions affect others.
Patient advocates’ input contributes to defining implementation issues, the study’s design, availability to underserved populations, and development. Their voices guide researchers in moving their research from the lab to the bedside. Including patient advocates in research has resulted in a greater understanding of what patients consider essential in treatment.
Patient Advocate and Researcher Relationships
The inclusion of patient advocates creates a community of responsibility. Patient advocates and researchers understand they can achieve their goals by working together.
The partnership between researchers and patient advocates is considered beneficence. Through grant reviews, patient advocates can determine if their fellow patients would consider the potential side effects worth the possible outcome. Patient advocates can highlight how a primary treatment can harm other ongoing treatments. Patients may not want to cope with potential primary or secondary side effects that some researchers consider acceptable. There is no question that patient advocates understand how research can significantly impact their care.
Furthermore, inclusion develops trust. Patient advocates represent various communities that can rely on them to have their needs and thoughts heard. Researchers’ perceived needs may not align with the community’s actual needs. However, communities represented by patient advocates involved in the step-by-step process that may lead to a change in treatment may place more trust in the new treatment. Confidence in findings or conclusions can increase if the public knows people like them are included in the process.
Another potential benefit of inclusion is control. When I was diagnosed with cancer, the machine that is cancer care took over—any disease diagnosis strips away the feeling of control. Information is given, often while the patient is still trying to process the diagnosis.
I was a partner in my treatment because my oncologists explained the process and options for care. However, I didn’t have a say in how this care became the standard. Patient advocates participating in grant reviews can change researchers’ perspectives on developing treatments to mitigate adverse effects and give patients control in their care.
A final point regarding understanding the role of the Patient Advocate is how their input can boost ethical reviews. Ethical reviews in research settings increase the potential for ethically sensitive decisions that can benefit the cancer community.
Education: Voices in Research Ethics
Research ethics courses that don’t include the importance of Patient Advocates fail. Courses that don’t focus on the bioethical considerations surrounding the inclusion of Patient Advocates leave them out of the conversation. This also means there isn’t a learning opportunity for those seeking careers in the medical or research field to understand and include patient advocates.
The role of the patient advocate in research fulfills a moral obligation to those diagnosed and those studying ways to prevent, reduce, or eradicate the disease and its effects. Including courses in medical, nursing, post-doctoral, or fellowships about patient advocates opens possibilities to build stronger partnerships while acknowledging patient advocates’ contributions to research.
Christina Sisti, DPS, MPH, MS, is a Patient Advocate and Health Policy Consultant. She represents patients and caregivers on the U.S. Federal Drug and Administration’s Patient Engagement Collaborative, the National Cancer Institute’s NCI Technology Research Advocacy Partnership, the Clinical Research Advocacy program, and the Department of Defense to advance high-impact cancer research and funding. In addition, Dr. Sisti volunteers with Moffitt Cancer Center and the National Coalition of Cancer Survivorship’s Cancer Policy and Advocacy Team. Her work with these groups includes meeting with state and federal legislators to advance cancer health policy.