Voices: At the Center of it All

At the Center of it All | Dee Sparacio

Over the past nine years I have seen an increase in the number of non-profit organizations whose mission is to raise awareness of gynecologic cancers and funds for research. There are national organizations and many local gynecologic cancer organizations that consistently raise awareness about the risks and symptoms of gynecologic cancers via TV, radio, print, Twitter and Facebook. Other non-profits fund research host dinners, walks and runs, teas, and auctions. This private funding has been so important the past few years as government funding of cancer research has been reduced.

Along with these organizations there are individual women, some newly diagnosed, others in treatment and others years out of treatment who share their journey with gynecologic cancer through memoirs, blogs and news articles. Women with gynecologic cancers are taking more control of their own treatment plans. Women are speaking up about side effects and their personal needs. Others are openly discussing their cognitive issues and their need for psychosocial support. They are doing this in support groups, online groups, and social media. Women are having conversations about these issues with their gynecologic oncologists, nurses and social workers. Our needs as survivors are moving to the center of our health care discussions.

Another place where patients and survivors are coming together is at the center of research. I recently had the privilege of being a patient reviewer for the Patient-Centered Outcomes Research Institute (PCORI). PCORI was authorized by Congress to fund and provide patients with results from comparative effectiveness research (CER). In CER research, studies are designed to help provide patients and their health care providers with ways to make informed decisions regarding the effectiveness, benefits, and harms of different prevention, treatment and care options.

PCORI has multiple funding cycles through the year and various categories in which researchers can apply for funding. One of the major criteria for funding a PCORI research project is that the studies are required to have patients take part in all aspects of the study. Patients are engaged in the study design including its outcomes, they are also active participants in the study itself and they aid in disseminating the results of the study.

The type of research that PCORI funds answers many of the questions that patients have been asking for years about their treatments and follow-up care. I know that during my recurrence I wish I had more information about what would work best for me–surgery first and then chemotherapy or chemotherapy first and then surgery. Patients want to know the risks and benefits of different treatments. They want to compare the side effects of each treatment choice in order to make an educated decision about how much they want that side effect to impact their quality of life. They also want to be sure that the outcomes they see are important to them. And they want strong science to support the decisions they make.

I came home from the PCORI review happy to see patients working with researchers and stakeholders to make a difference in the lives of others. And I look forward to seeing the growth of more patient-centered research in the coming years just as I have seen the growth in patient-driven organizations.