Guest Commentary by Shannon Bell
In recognition of the expanding role of cancer advocates, the NCI Cancer Bulletin will publish periodic articles on cancer advocacy, tagged with a purple series icon. To read more articles in the series, click here. Like all content in the NCI Cancer Bulletin, these articles can be republished free of charge and without prior permission.
NCI's Office of Advocacy Relations:
Bringing Advocacy and Research Together
Just as researchers and clinicians have begun to better understand that cancer is a highly complex group of diseases and have adjusted how they study and treat these diseases, cancer advocates have realized that effective advocacy is a complex and multidimensional pursuit—one in which they can play many roles.
The mission of NCI's Office of Advocacy Relations (OAR) is to support cancer advocates in their efforts. We do that by identifying and facilitating opportunities for NCI to collaborate with the advocacy community to find more effective ways to advance cancer research and patient outcomes. A key part of our work involves providing advocates with the information, tools, and opportunities they need to bring their experience, expertise, and passion to bear.
The traditional view of cancer advocates—or any disease advocates, for that matter—has been that they support patients and their families and also raise awareness. These roles continue to be vital for the cancer advocacy community.
But over the last decade, cancer advocates have become involved in other substantial ways, such as engaging in the research process and shaping public policies that affect cancer research and treatment. Such activities include serving as members of peer-review panels; forging collaborations with and between researchers; funding research; serving as information gatherers, translators, and disseminators; and communicating with policymakers, researchers, and patient communities.
We in OAR connect advocates with NCI researchers and staff looking to incorporate a collective patient perspective into a broad array of research activities, including the NCI Community Cancer Centers Program and Specialized Programs of Research Excellence, as well as in the design of clinical trials and the review of research proposals.
Just last week, the NCI Director's Consumer Liaison Group (DCLG), an NCI federal advisory committee composed entirely of community stakeholders, met to learn more about and discuss the evolving approach to cancer clinical trials. The meeting allowed DCLG members to get an in-depth look at the clinical trials process. In particular, the group learned from NCI, the Food and Drug Administration, and community researchers about how advances in genomics are leading to novel approaches to clinical trials.
This isn't education for education's sake. Relying on the collective experience of the patients and families on whose behalf they work, DCLG members can use what they have learned to aid in the design or recruitment efforts of novel clinical trials in their own communities.
In OAR, we are evolving to better serve the NCI mission to advance cancer research and improve patient outcomes. This evolution is being driven in part by a report released earlier this year by the NCI Advocates in Research Working Group (ARWG). The ARWG, which was established several years ago under the auspices of the DCLG, was charged with examining NCI's overall efforts to engage the cancer advocacy community and recommending ways to streamline and strengthen these efforts.
The ARWG report includes a number of important recommendations, and OAR is leading the effort at NCI to implement many of them.
One such initiative is aimed at establishing a more robust training program for advocates. Among the first steps is the development of an online repository of training materials produced by NCI, NIH, advocacy organizations, professional societies, and others. The repository will serve as a centralized location for tools and resources that can help advocates understand the research process, understand and translate research findings, and identify ways they can more effectively engage as research advocates. The goal is to have the repository up and running next year.
OAR is in a unique position to act as a convener, identifying areas of alignment within NCI as well as across external stakeholder groups. Recently, OAR collaborated with staff from several NCI offices and numerous disease-specific advocacy organizations to analyze the research that is being conducted across these funding sources. The goal was to identify how these organizations can work together to effectively address gaps in the research and barriers to progress.
Ultimately, our job is to establish relationships and partnerships that advance cancer research and lead to better outcomes for cancer patients, survivors, and their families. More so today than ever, advocates are a critical partner in the cancer research enterprise, and their involvement will become even more imperative in the years to come.
Director, NCI Office of Advocacy Relations
Further reading: "Cancer Advocates at ASCO: Connecting for a Cause"