Launching the ‘Considering Clinical Trials’ blog to share information about cancer treatment options

In the August 2019 issue of the ECOG-ACRIN Cancer Research Group (ECOG-ACRIN) member newsletter, we interviewed Mary Lou Smith, JD, MBA, who chairs our Cancer Research Advocates Committee, a vital group within our organization. This conversation highlights the critical role this committee plays in advancing ECOG-ACRIN’s mission to achieve research advances in all aspects of cancer care. The committee was formed many years ago to help bridge the gap between researchers and patients; to ensure the patient voice is represented at every stage of ECOG-ACRIN clinical trial design and implementation. As mentioned in that article (reprinted below), its efforts to date have been fruitful, in some cases leading to changes in therapy approaches.

To complement and expand the work of the Cancer Research Advocates Committee, we are launching this Considering Clinical Trials blog to connect with the broader advocacy community and encourage interaction, feedback, and dialogue. In each issue, we plan to feature one recently activated trial, one ongoing trial, and a timely collection of trial results, including research recently published in medical journals or presented at major medical meetings. Occasionally, we will also include polls or design questions to help inform upcoming projects. We look forward to engaging with you on these topics and applying what we learn to our research efforts.

The three trials in this issue span different cancer types and research disciplines. Our recently launched trial, EAZ171, aims to address an important survivorship issue, neuropathy, in African American women diagnosed with breast cancer. Our ongoing trial, EA1151/TMIST, is a breast cancer screening study that will lead to personalized screening for women. Finally, the results of leukemia trial E1912 were recently published in the New England Journal of Medicine, and established a new standard of care for the initial treatment of chronic lymphocytic leukemia (CLL). We hope you enjoy learning about these studies, and urge you to share this blog with others.

The Value of the Advocate Voice

A Conversation with Mary Lou Smith, JD, MBA
Chair, ECOG-ACRIN Cancer Research Advocates Committee
Reprinted from the August 2019 ECOG-ACRIN Member Newsletter

What are some significant ways advocates can help advance cancer research?

Advocates can help during the design stage of a trial, identifying questions for researchers that are meaningful to patients. We can share the patient experience, which is important in trial design, but also activation and recruitment. Advocates can describe what it is like to undergo a particular therapy or to live with a certain disease or side effect. We can also suggest ways to communicate effectively with patients. Since researchers have such an in-depth understanding of the science, sometimes they overlook when the person they are speaking to is not getting the full picture.

How can principal investigators and study teams utilize the advocacy community to build awareness and understanding of trials?

Advocates are great at making connections, so one way we can help is by introducing researchers to individuals at organizations that focus on specific cancer types and serve specific patient communities. Principal investigators (PIs) and study teams leading clinical trials should consider the members of the ECOG-­ACRIN Cancer Research Advocates Committee a valuable resource for this. I would also encourage researchers to simply remain open to advocate feedback. Communication between physicians and patients can sometimes be a challenge. We can help with this, and translate information into lay language so patients can feel informed when making decisions.

What projects or initiatives is the Cancer Research Advocates Committee focused on right now?

We're focused on a couple of things. One of them is shared research - or community-based participatory research - and applying that framework to our efforts. It involves a patient population identifying problems within their own group, and then working on solutions together with the researchers.

We're also investigating how to better incorporate the community voice into our committee discussions. Attendance at the ECOG-ACRIN group meetings is limited among community oncology professionals and advocates, so we're trying to identify other ways to gather community input, especially from those who work in hospitals and cancer centers that are part of the National Cancer Institute's NCI Community Oncology Research Program (NCORP).

What else would you like members of ECOG-ACRIN to know about advocacy or the Cancer Research Advocates Committee?

We are a resource for them, and we want to help make their research as good as it can be. Our committee is really varied: we have different races, ethnicities, genders - and, of course, different cancers - represented. We include advocates from all the major cancers that are part of ECOG-ACRIN's research agenda. We can do things as simple as send a letter of support for a trial when it goes to a steering committee, or find a patient willing to attend a call and provide input. These are not huge things, but they can have a big impact.

Learn more and view the membership of the Cancer Research Advocates Committee at ecog-acrin.org.