FORCE has a strong commitment to promoting research to benefit our community. We advocate for more research funding, educate people about available studies, and report findings back to our community.
by Lisa Rezende, PhD
Clinical trials and other clinical research studies are critical for developing new ways to prevent, detect, and treat cancers. Despite this, only a fraction of eligible patients participate in clinical trials that are essential for bringing these new approaches to patients. As part of our new Project IMPACT (Implementing a Patient-centered Approach to Clinical Trials) that is supported by a Celgene Innovation Impact Award, FORCE asked our community what influenced its decisions to participate in clinical trials. Our first report discussed how patients decide whether or not to participate in clinical research. In this report, we discuss what patients look for when considering a clinical trial, and how much they understand the terms often used in descriptions of clinical research.
Clinical research spans a wide array of studies, including cancer prevention, detection, treatment, and quality of life. We asked respondents to identify in which type of studies they would be willing to participate, giving them the opportunity to select as many as they wanted. Only 1.5% of respondents said they would not participate in any clinical research. The remainder said they would be interesting in participating in a variety of different studies, including:
Comments from respondents varied, from showing broad support for clinical research…
…to more situational views, such as:
Others showed support for specific types of research, including:
Participants responded that they are more likely to participate in studies that do not involve new drugs. Because survey participants included both cancer survivors and people at high risk, we then narrowed our analysis, looking just at the 631 people who reported being diagnosed with cancer (53% of people who completed the entire survey). Compared to the larger group of respondents, cancer survivors expressed a slightly greater willingness to participate in a study involving a new drug to treat cancer (50%), and the same willingness to participate in a study involving a drug to prevent cancer (45%).
The type of cancer also affected willingness to participate in the testing of a new drug. A greater proportion of women with ovarian cancer were more willing to participate in a study involving a new drug to treat cancer (66%) than people diagnosed with breast cancer (46%). Breast cancer patients’ most recent stage of cancer also affected their willingness to participate in a trial involving a new drug: 80% of respondents living with metastatic breast cancer said that they would be willing to participate in a study involving a new drug, compared to only 24% of people diagnosed with DCIS.
We then asked if respondents would be more or less likely to participate in different types of studies. Respondents were asked to mark “unsure” if they were unfamiliar with a term.
Most responded that they are either very likely or likely to participate in studies involving genetic testing (88%), prevention studies (72%), research registries (68%), tumor testing (58%), or maintenance studies (52%). A majority expressed that they were very likely or likely to participate in treatment studies using immunotherapies (52%) and targeted therapies (51%).
likelihood of participating based on type of study design or type of intervention
On the other hand, many patients were either unsure or unlikely to participate in research with common study designs, such as placebo control (49%), double blind (49%), or randomized (39%). These results show a need for educating patients on the meaning of these terms when they appear in clinical research descriptions, as well as explaining the rationale behind these types of study design.
In order to design patient-friendly materials, the terms used in the description must be clear. When we asked how familiar our respondents are with many of the terms that are found in study descriptions, we learned that many individuals were unfamiliar with terms used to describe study design and outcomes. While some of these terms, such as “progression free survival” are not often found in patient materials, they are used in study descriptions in databases such as clinicaltrials.gov. Patients must be able to understand the terminology for these databases to be useful to them.
familiarity with common research study terms
Some terms used to describe what was involved in the research, such as “genetic testing” were very familiar (88%) to our respondents, while others, such as “proteomics” (2%) were not. It is important to point out that the survey asked only if the respondent was familiar with the term. Clear communication occurs when patients’ understanding and definition of terms is the same as the researchers and/or health care providers.
familiarity with common research study terms
FORCE will use the information collected through the Project IMPACT survey to redesign some of our clinical research materials. We thank everyone who participated in our survey and look forward to unveiling new materials informed by these results in 2017.