CISN - Cancer Research Advocacy

Advocacy

Also in this section:

What is research advocacy?

There are many types of cancer advocacy. Research advocacy is a specific type of advocacy that focuses on how advocates can be involved in cancer research. Research advocacy means different things to different people. Although the activities of research advocates may vary, the purpose is similar:

To actively participate in all aspects of research –

from basic bench science through to the implementation of practice changing interventions that benefit patients.

Why is it important to have research advocates?

Unfortunately not everyone conducting research appreciates and is aware of what advocates can add to his or her scientific project. However, over the past several years the inclusion of advocates in research is becoming more common, especially in cancer research.

The National Cancer Institute supports these efforts and has this quote on their website – “As advocates participate in various NCI activities, they incorporate the collective patient perspective into the NCI research enterprise and serve as a reminder of the need for research focused on patients benefits and outcomes.”

We will review how research advocates are involved in all areas of research:

From the bench to the bedside

From local cancer centers to government committees

From the inception of a project through its conclusion

To the dissemination of research results to the public

These are some of the benefits of having an advocate involved in research.

As the field of research advocacy continues to grow, one of the most frequently asked question by researchers is – how will they help me?

Because each project is different, as are each researcher and advocate, the answer varies and like all interactions also depends on the level of commitment by each member of the team.

The goal is to help the project succeed.

Below are a few examples of how advocates can be of assistance:

Advocates contribute by adding a human face and sense of urgency to cancer
research.

They ensure the projects are patient focused with an eye on outcomes.

They provide a diverse perspective so that the needs of all types of people are
articulated – people are not all the same.

An important aspect of advocacy is to stimulate discussions that may
otherwise not happen, which can lead to innovation.

Advocates function as an ‘in-house’ focus group to get projects over barriers
early on before the project moves forward in the wrong direction or with
flaws.

“Advocates are also the perfect people to help expand public understanding of
science.” Perlmutter et al, 2013

Who are research advocates?

There are many ways people become involved in research as an advocate. Anyone with an interest in science and a passion to improve the lives of patients can become a research advocate. If you think you may enjoy learning about the science of cancer, there are ways to learn what you need to know to be an effective advocate (see Training Section at the end of this section). However, you also need the passion and drive to put in the time and effort to be an effective advocate.

Research advocates are:

People who have had cancer, been a caregiver to someone with cancer or affected by someone who had cancer.
People who are motivated to reach out to others also suffering from cancer.
People who are motivated to make a broader impact by self-educating in understanding the science behind cancer and its treatment.

People interested in research and willing to become trained in scientific methodology, research design, basic statistics, and other scientific areas of cancer research.

Quote from Kate Murphy (1942-2012)

		“Not only does my face and my cancer story inject reality into the cancer research enterprise, it seems to add some sense of urgency…We need to get the job done now without quibbling and without egos.” (Mayer, 2011)