Research & Clinical Trials

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.

Research & Clinical Trials > Research Findings > How Patients Decide To Participate in Clinical Trials

| More

What Patients Need to Know Before They Decide to Participate in Clinical Research: More Results from the Project IMPACT Survey 

by Lisa Rezende, PhDinnovation impact

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.

Patients are willing to participate in a wide range 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:

  • A study involving genetic testing: 83%
  • A survey or questionnaire: 81%
  • A study to detect cancer earlier: 76%
  • A lifestyle study: 69%
  • A cancer registry: 52%
  • A study to predict outcomes of cancer treatment: 49%
  • A study looking at a new drug to prevent cancer: 45%
  • A study looking at a new drug to treat cancer: 36%

Comments from respondents varied, from showing broad support for clinical research…

  • “I Will do whatever I can to prevent or cure this disease.”
  • “Whatever is needed to help others not have to go through what I went through.”

…to more situational views, such as:

  • “Predicting outcomes only if I was in advanced stage cancer.”
  • “Only if there was no placebo.”
  • “It would depend on diagnosis.”

Others showed support for specific types of research, including:

  • “Anything that involves alternative medicine, holistic health or exercise or diet to improve outcomes I have high interest in participating.”
  • “Is there a study involving "fixing" the BRCA1 and BRCA2 genetic mutation? I'd participate in that.”

Willingness to participate in a study that involves a new drug varies by cancer diagnosis

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. 

Study design and type of intervention affects patients’ willingness to participate in clinical research

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 participation graph
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.

Patients are unfamiliar with many terms used in descriptions of clinical research

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 Patients must be able to understand the terminology for these databases to be useful to them.

familiarity with terminology
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 terms table
familiarity with common research study terms

Next steps

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.

Posted 01/08/17

Help us achieve our goal of enrolling 15,000 people in HBOC Research.

Recognize a Loved One

The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast and ovarian cancer community.

Personal Fundraising

The goal of the ABOUT network is to enroll as many Americans with HBOC risk as possible into our research registry and to collect information and real world health care experiences that can be used along with information from medical records to improve care for people with HBOC.

FORCE:Facing Our Risk of Cancer Empowered