It’s a shocking fact that sadly won’t surprise many nurses: Up to 40% of cancer clinical studies go unfilled or are closed early–without having their questions answered–because there are not enough participants.
Why the lack of participation? As you’ve likely seen firsthand, the process for patients to get involved with medical research can be confusing and difficult. There are lots of forms to fill out, tons of medical jargon and the prospect of clinical research can be downright frightening for many patients. Plus, a great deal of study information online is slow to update and sometimes inaccurate.
As a nurse, you know that research is crucial for developing new therapies and finding evidence-based answers to critical questions in the medical community. On average, a very low percentage of cancer patients (only 2-4 percent of all adults diagnosed!) participate in clinical studies. This lack of participation greatly affects healthcare as we know it—including your job!
One healthcare team, though, is out to change clinical research participation history. Cedars-Sinai Medical Center in Los Angeles has created an innovative program, called Research for Her, to connect female cancer patients with research studies. The online data registry is open to all women, with or without a history of cancer, over the age of 18.
In addition to the registry, the Research for Her team also executed a first-of-its-kind solution to develop an online, governmentally compliant consent process. Working with DocuSign, they created a system to verify potential research candidates. Since DocuSign is frequently used to digitally sign home ownership paperwork, many people are familiar and comfortable with it, making participation in clinical studies that much easier.
“Online consenting is not only sustainable, it is vital to the growth of research programs, such as Research for Her,” said Eifaang Li, director of the Office of Research Compliance and Quality Improvement at Cedars-Sinai. “Utilizing technology allows the program to not only reduce the time patients spend in the clinic, but also increase operational efficiency. Online consenting also allows the Research for Her program to stay up to date in an increasingly technological society.”
Right now, the program is only available for women’s cancer studies at Cedars-Sinai, but the Research for Her team would like to expand to other hospitals and specialties to increase the number of people participating in these clinical trials. We spoke with Dr. BJ Rimel, a co-principal investigator of the program and a gynecologic oncologist in the Women’s Cancer Program at the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, and Paula Anastasia, a research nurse for the clinical studies, about what nurses could do to encourage research participation among patients in their own hospital:
- Help interpret the sometimes-frightening research language for patients.
- Communicate the benefits of research to your patients! Everyone wants a cure for what has affected them and their families, and research is key.
- Help get across the idea that research is not just for people who are ill; healthy people need to participate, too! It’s a great way to learn about screening trials that try to find early detection of cancer.
“Nurses are so valuable to patients’ experience,” Rimel said (can we get an amen?!). “If nurses could get behind this [program], I’d be done!”
Nurses, do you encourage your patients to participate in clinical studies? Will you now? Share your experiences in the comments below.