Power of the Patient Voice

What does science matter to the cancer patient? You only need to look at the links on this website to know that many people living with cancer want to know as much as possible.

I’m one of those people.

But, like me, you may not have a strong science background. It can take time to learn both the jargon and find the people and resources that provide worthwhile knowledge. I’ve been fortunate to not only be around researchers at meetings, like those of the American Society of Clinical Oncology and Theresa’s Research Foundation, but to also have formal and intense scientific training through the National Breast Cancer Coalition.

Even with those experiences, science can intimidate me.

So I was excited when two advocate friends, Christine Hodgdon and Julia Maues, launched a program called GRASP (Guiding Researchers & Advocates to Scientific Partnerships) at the San Antonio Breast Cancer Symposium. Believers in the power of the patient voice to drive stronger research, these advocates envisioned a way of spreading knowledge between patient advocates and researchers that allowed everybody to learn and to benefit.

GRASP brings together an experienced cancer researcher/oncologist, a trained GRASP mentor to model talking to a researcher and patient advocates to walk through the poster sessions. Poster sessions happen at most scientific meetings and showcase cutting-edge research. It’s where ideas are being explored and discussed one-to-one between the researcher and the viewer.

You can learn a lot at the poster sessions, but it’s also easy to feel out of place and unsure if your questions make sense to the trained scientist standing in front of you. Encouraging advocates to speak to the researchers, to share their expertise as patients and to impact the science are fundamental parts of GRASP. Because patients are experts in living with cancer, we are in a unique position to provide insights to research that may have been overlooked by someone not living with the disease. In other words, the learning goes both ways.

I love the GRASP initiative and admire the people behind it. Not least because it proved to me that my hesitation about thinking scientifically is misplaced. It was also reassuring to hear the researcher my group was paired with ask the same questions I had and to hear “my” advocates, as I was the GRASP mentor, asking questions that brought the advocates and the presenter into detailed conversations.

If you are thinking about attending a scientific conference, take time to walk through the posters. Though GRASP isn’t everywhere (yet), you can learn to make the most of this part of science:

Poster Sessions Are Informal

This means that “everybody is literally on the same level,” says GRASP founder Julia Maues. There are no microphones or stages, poster presenters are there to explain their work and answer questions.

You Have Expertise Researchers Value

When you think about your experience with cancer, consider your body, your community and the side effects you’ve had. All of these things, and more, hold information that can benefit researchers.

Do Your Homework

Posters are often available to look at online ahead of time. Know what research you don’t want to miss or your general areas of interest, though don’t ignore the unexpected poster that grabs your attention.

Start With The Intro

For me, reading the introduction and the conclusion gets to the heart of the poster. It’s fine to ask a presenter about the “take-home message” of their work. You want to know why the science matters.

Funding Matters

As with science we read about in newspapers, it’s always a good idea to understand who is paying for the work to be done. Good work finds support everywhere, so don’t discount funding from pharmaceutical companies or other for-profit entities — but do be informed.

Be Curious

A poster session is where I learned why I may not respond to certain peripheral neuropathy recommendations, for instance, and about the problems associated with the lack of older patients in clinical trials. Wander the room and find what intrigues you.

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