What a difference patients make: Honoring the impact of cancer clinical trial participants

It is not an exaggeration to say that without patient volunteers for cancer clinical trials, the research community would not have made the enormous progress it has in finding new and better ways to prevent or treat the disease. Cancer clinical trial participants contribute to scientific understanding in countless ways—but may sometimes wonder “what’s next” when their part in a trial is over. They may never realize how their trial impacted patient care or fueled a new discovery.

To address this, the ECOG-ACRIN Cancer Research Group (ECOG-ACRIN) launched the Trial Results Summaries Project. This project aims to ensure that clinical trial participants are informed of the results of ECOG-ACRIN-led studies in which they took part. Moreover, it acknowledges and thanks people for their contributions to cancer research. It is the vision of the group’s Cancer Research Advocates Committee, led by Mary Lou Smith, JD, MBA and Lisa Beckendorf.

"When researchers take the time to acknowledge clinical trial participants for the vital role they play in cancer research, their gesture helps build trust in the research process,” says Ms. Smith, a two-time cancer survivor. “It is our hope that trial volunteers will be inspired to become ambassadors for clinical research in their own spheres of influence—encouraging family members, friends, and colleagues to seek out clinical trial opportunities themselves. Every connection can make a difference.”

The initiative is a collaboration among the ECOG-ACRIN’s advocates, researchers, and staff members on the Clinical Education and Awareness Team. It has two parts, described below. 

• Letter to Participants: This letter thanks people for their participation and summarizes the trial results in patient-friendly language. It follows a Q&A style format addressing key questions: What did this trial involve, and who is it for? What are the results? What do the results mean for patients? Links to each completed trial’s ClinicalTrials.gov listing and medical journal publications are included for more information. Letters are reviewed in draft form by ECOG-ACRIN patient advocates and the study’s chair. Once finalized and approved by the National Cancer Institute’s (NCI) Central Institutional Review Board (CIRB), they are made available to staff at the hospitals and cancer centers where patients joined the trial. Sites can customize the letters if they choose, have them signed by the lead physician, and then provide them directly to patients.
• Trial Results Summary: ECOG-ACRIN strives to make clinical trial results available to the public in a standardized, easy-to-read format. For every patient letter, there is a trial results summary for the public. These documents contain the same information as the letters but are formatted as handouts. They are posted to the ECOG-ACRIN public website for widespread use.

Given the vast scope of ECOG-ACRIN’s research portfolio, not every trial has a results summary currently. As the project is being built out, initial factors for inclusion are trial results (positive or negative) that led to a press release and/or publication, new/innovative types of trials, or studies with a large scope.

“The vision of our advocates has led to trial results summaries that are a win-win for everyone, including patients, researchers, and the public,” says Peter J. O’Dwyer, MD, ECOG-ACRIN’s group co-chair.

View the trial results summaries at ecog-acrin.org. This project is growing rapidly, so be sure to check back frequently as we add new summaries on a rolling basis.

We hope you will not only use these resources but also help us to spread the word about them. Please share this article using the social sharing buttons. We also welcome your input as we continue to develop the project. Submit a comment below with any thoughts or suggestions.

Related: Did you know that the ECOG-ACRIN’s Clinical Education and Awareness Team produces a wide variety of educational and recruitment materials for trials that are actively recruiting patients, including patient study summaries, patient-directed videos, and communication plans (patient-friendly text and images for websites, social media, etc.)? Visit the Resources for Active Clinical Trials section of ecog-acrin.org.