How Patient Advocates Help Cancer Research

Last Updated: July 10, 2020

Research advocacy is a partnership between researchers and patient advocates and allows the patient experience to inform the process of cancer research. In this video, patient advocate Patty Spears explains how research advocates bring the patient perspective to the forefront.

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What is a Cancer Research Advocate?

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Cancer.Net: Doctor-Approved Patient Information from ASCO®

How Patient Advocates Help Cancer Research

Voiceover: Some cancer survivors and others whose lives have been touched by cancer become cancer advocates. There are many ways people can advocate on behalf of those with cancer, such as going with a loved one to a doctor's appointment, working to raise cancer awareness, and pushing for legislation on behalf of cancer survivors.

But research advocacy is a different type of advocacy, where advocates work directly with cancer researchers.

Patty Spears, Cancer Research Advocate; Member, American Society of Clinical Oncology: I think of it as being the patient voice or the patient experience in research. And so the point is to add urgency to research, and to add purpose, almost, and to make sure that the research is really focused on the patient in the end and that it really, in the end, will impact patients in a positive way whether patients live longer or live better. And so that's why I'm involved in the research advocacy part, working with researchers.

Voiceover:  Research advocacy is a partnership between researchers and advocates and allows the patient experience to inform the process of cancer research. Regardless of the research topic or area of research, research advocates are always bringing the patient perspective to the forefront.

Patty Spears:  I really believe in research going forward so we really need to train our researchers to communicate with the public. So I do a lot of talking with post-docs and graduate students about how to talk about their research to the public in a way that they can understand. I do a presentation on scientific jargon and how to make things simpler.

And also in the realm of research, a lot of the research in this, kind of flows into-- when you start asking for funding for your research, you know, government funding is one thing, but also organizations and non-profits also fund research. And so if you go for a research grant at a non-profit, you might be asked to do a lay summary or a public summary. They need to be able to tell their donors what their money is going to. And also, a lot of times when you submit grant applications to organizations, advocates and patients do read those applications, and so if you are communicating with an advocate while you're writing it, they can help you write it in a way that you can really get your point across about the positive impact it might have in patient lives and how you can write that better.

Voiceover: Research advocates have played a key role in the area of clinical trials, helping to balance the science with patient concerns and needs, and ensuring that the issues that are important to patients are discussed and considered when clinical trials are developed and conducted.

Patty Spears:  So I also do a lot of research advocacy in the area of clinical trials. And that's one of my focuses recently because I really think that we can make an impact as patient advocates in that area, to make sure that the questions being asked are important to patients, and that during the clinical trials what we look at and what we measure is what matters to patients. And so I always say that when you do a clinical trial it is to get the best drug and the best treatment to patients, to improve the lives of patients. They need to live longer, or live better, or both hopefully. But sometimes when clinical trials are developed, it's such a “scientific question” type of thing that you lose sight of what you're really doing at the end.

So I work a lot with the researchers on clinical trials and looking at how they're set up and how they can reduce the burden to the patient, whether it's cost burden or toxicity burden and things like that. And also in getting the patient voice into clinical trials through questionnaires and patient-reported outcomes, so that you can hear directly from the patient during the clinical trial.

I think that's really, really important, because when you come to the end of the clinical trial, it's really important to have that information so you can give that to the future patients taking that that intervention.

Voiceover: To learn more about the role of a research advocate, visit ASCO's patient information website, Cancer.Net.

Patty Spears: One of the things about advocacy and cancer in general, is finding that place where you can find reliable information. And cancer advocacy and research advocacy is not really broadly known about, but ASCO's done a really good job on Cancer.Net. Whether it's through blog postings or interviews with people, and just reading up on it on the website, you'll find a lot of information online.

[Closing and Credits]

Cancer.Net: Doctor-Approved Patient Information from ASCO®

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