For Komen Scholar Barbara Segarra-Vazquez, It’s All About the Patient Voice

Jul 22, 2020 | Advocacy, Community, Research, Stories

Dr. Barbara Segarra-Vazquez, DHSc, a Komen Scholar and Vice-Chair of the Komen Advocates in Science Steering Committee, recently talked with Susan G. Komen about her efforts to include more patient perspectives in breast cancer research and treatment.

Segarra-Vazquez was diagnosed with early stage breast cancer on December 2003 and was in remission for thirteen years. On January 2017 she had a recurrence of metastatic breast cancer to the skin. She is a faculty member at the University of Puerto Rico and the Dean of the School of Health Professions.

Komen: Tell me a little bit about the work you’re doing to ensure we have patient diversity in research studies and clinical trials.

Segarra-Vazquez: Hispanics represent 17% of the U.S. population and only 2.5 – 6.5% of clinical trial participants. It’s not because they don’t want to, it’s because they are not typically invited or the clinical trials are not robust enough to recruit that population. If researchers prepare and explain the trials in Spanish, Hispanic patients are very committed. I think we need to do more to educate investigators about the misconception of Hispanics as not willing to participate in clinical trials.

My second mission is to involve more advocates, Hispanic advocates, in research. Once you’re sitting at the table and speaking with one voice, people see you. I think we have to do a better job – from the funders to the patients – to represent the Hispanic population.

Komen: What do we need to do to change that dynamic?

Segarra-Vazquez: One suggestion I have made is that for example, for the National Institute of Health to have a funding opportunity only for minority serving institutions, like for the University of Puerto Rico. If you have limited grants and limited money available, usually these minority-serving institutions are going to be down at the bottom of the funding list. Another option would be to provide grants to major institutions that partner with a minority-serving institution.

Komen: What’s been the biggest change in breast cancer or breast cancer treatment you’ve seen over the years?

Segarra-Vazquez: What I really appreciate is research is trying to look at how people with breast cancer can survive and live longer with a higher quality of life. I think that’s the biggest thing, really listening to what the patient has to say. The research being done now includes patient reported outcomes because a physician could say, “For patients, losing the hair is not important.” But for a patient, that could be a very bad side effect. Side effects matter – it really depends on the patients and how they deal with things on a regular basis.

I’m also really encouraged that now researchers, especially if they have a NIH grant, are publishing their results: good, bad, or inconclusive. It helps because it used to be like, “This wasn’t good, I’m not going to say anything.” Then you have somebody start the research all over again. That’s not good for patients. For patients, we need to know what’s happening. If it’s good, great, we were encouraged. But if it’s not good, we have to know that also.

Komen: What kind of breast cancer did you have?

Segarra-Vazquez: It was invasive ductal carcinoma. I had a lumpectomy, then six months of chemotherapy. Then I had 35 sessions of radiation therapy and five or six years of hormone therapy. Then 13 years later, my cancer spread to the skin. It was like a little scratch and I just thought it was nothing. When a dermatologist did the biopsy, it was metastatic breast cancer to the skin, and it was the same type of cancer as the first diagnosis.

Komen: What can we do to change the availability and access to research in Puerto Rico?

Segarra-Vazquez: We need more research taking place locally. I think our physicians also have to get involved in research and participate. There’s a Puerto Rico consortium for clinical investigation. They’re trying to get pharmaceutical companies to bring more trials to Puerto Rico, and they’re recruiting physicians and community physicians to accomplish this.

Komen: What can be done to enroll more people of Hispanic origin in clinical trials?

Segarra-Vazquez: We need more information. I’m blessed enough to speak both languages, but I’m really amazed by the number of Hispanics that live on the main island that don’t speak English. So that is something we have to look at and help them navigate. But I think people should be given the opportunity, and I’m going to encourage resources be provided in Spanish, so patients know what questions to ask their clinician about clinical trials.