E-Newsletter - May 2024
Spotlight on Alliance Committees



By Patty Spears, Vernal Branch, and Jane Perlmutter
Alliance Patient Advocate Committee Leadership

Cancer research advocacy has evolved a great deal over the past 25 years. The National Cancer Institute’s National Clinical Trials Network Groups have always been at the forefront of this evolution. In 1994, Deborah Collyar became the first advocate in the Cancer and Leukemia Group B (CALGB). Today, the Alliance has 22 advocates who are part of the Alliance Patient Advocate Committee (PAC) and take part in almost all the committees. Patty Spears is the chair of this group and has recently added two vice chairs. Vernal Branch will focus on health disparities, and Jane Perlmutter will focus on cancer control. 

Hear what motivates the Alliance PAC leaders.

Patty Spears

I have been a cancer research patient advocate since my breast cancer diagnosis in 1999. I received neoadjuvant chemotherapy, surgery, radiation therapy and joined a vaccine clinical trial. Years later I was diagnosed with hepatocellular carcinoma in 2022. I love science and I have a background in basic research and advocacy. I was an AIDS advocate before I was diagnosed. My background led me to focus my advocacy efforts on cancer research and clinical trials. I have seen the evolution of patient involvement in clinical trials improve over the years. However, clinical trials are changing, they are more complex and science driven. This means, it is more important than ever to keep the patient voice in the forefront of all our clinical trials. Alliance advocates work with cancer professionals to develop and advance outstanding clinical trials. We attend and take part in scientific meetings where we provide the patient perspective. We assist in designing study accrual strategies by identifying patient burdens. We also review study concepts and are part of protocol development teams. As Chair of the PAC, I recruit advocates and prepare them to take part in committee meetings. I also ensure they are meaningfully involved in their committees. I am looking forward to the future of Alliance clinical trials. The Alliance continues to be a leader in patient-centered trials that improve the lives of all patients with cancer.

Vernal Branch

I was diagnosed with stage II breast cancer in 1994, and my advocacy started eight weeks after my surgery. I had a family history of breast cancer but was unaware of it at the time. While living in California, I decided to become a research advocate. I helped improve screening in underserved communities. I designed programs for very diverse populations where I lived. I became the first African American to be appointed to the NCI-Director’s Consumer Liaison Group, where I served for seven years. It has always been my mission to help increase knowledge about clinical trials. I have been involved with several advocacy organizations and worked for a breast cancer non-profit. This made it easier for me to confirm the knowledge that I gained while working on cancer initiatives. Working with the Alliance has been a true collaboration for all of the advocates. We bring our own expertise as patients to help improve recruitment and protocol design.

Jane Perlmutter

I was first diagnosed with bi-lateral breast cancer in 1985 and 1988. I have since been diagnosed with metastatic esophageal and lung cancers, caused by the radiation I received in the1980s. I have not been a participant in any clinical trial. However, I feel fortunate to be alive due to patients who took part in trials that proved the value of checkpoint inhibitors. In the 1980s, there were few opportunities for patient advocates to participate in research. But over the years, researchers have recognized the value of including the advocate voice early and often. I have been part of that change. In addition to my personal cancer experience, my professional experience led me to advocacy in clinical trials. Being a cognitive psychologist involved teaching research methods and statistics to behavioral scientists has informed my advocacy. I became a CALGB advocate on the Breast Committee in 2007. When the Alliance was formed, my primary assignment changed to the Health Outcomes Committee. Currently, I am the advocate member of the Alliance Board of Trustees, Cancer Control Program's Executive Committee and the Data and Safety Monitoring Board. I also take part in the committees of Cancer Care Delivery Research, Value in Cancer Care, and Ethics, when possible.

Patient Advocate Involvement

Patient advocate involvement is important in the early planning of clinical trials. Advocates ensure trials address issues important to patients. 

Patient involvement in trial development ensure trials: 

  • Minimize burden and maximize benefit to participants
  • Are likely to accrue rapidly
  • Include informed consent and patient education materials that are easily understandable. These documents help potential participants make informed choices about their participation. 

Advocates also encourage the inclusion of patient surveys (PROMs). They also help develop recruitment plans that will ensure diverse participation. Once the trial is complete, advocates disseminate the results to patient populations. This increases community trust and support of research and clinical trials.

Closing Remarks

We are very lucky to have the opportunity to be part of the Alliance. We help ensure that our tax dollars are spent on trials that will advance science and help patients. Trials help patients who take part in trials and those who will benefit from what is learned. Mostly we value the friendships made throughout the years with other committed advocates and brilliant researchers.

Contact information:
Patty Spears, Chair, paspears88@gmail.com
Vernal Branch, Vice Chair, Health Disparities, verbra@msn.com
Jane Perlmutter, Vice Chair, Cancer Control, janep@gemini-grp.com


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