Advocacy in Action: Research Advocacy Network
Advocacy in Action sat down with Mary Lou Smith and Elda Railey to learn more about the Research Advocacy Network and the important work they do in training the research advocates of tomorrow.
Advocacy in Action videos at the American Association for Cancer Research (AACR) Annual Meeting 2012 was made possible, in part, by:
VIDEO TRANSCRIPT
Mary Lou Smith, JD, MBA, Co-Founder, Research Advocacy Network:
Our mission is to advance patient care by bringing in patient perspective to the research.
Elda Railey, Co-Founder, Research Advocacy Network:
We’re a different type of organization, we don’t have a patient constituency; we work with other organization to bring their research advocates together.
Mary Lou Smith, JD, MBA:
There were three of us: Judy Pradi, Elda Railey, and myself….
Elda Railey:
I’m not a cancer survivor. My sister has had cancer and I have never had other family members who have had cancer but in my work I represent those caregivers and family members that want to advocate for better research. And so there’s an element of research advocacy that’s very important to being inclusive of what we sometimes call ‘co-survivors’.
Mary Lou Smith, JD, MBA:
We felt very strongly that we needed more auvaus (sp?). We enjoyed the work immensely, we felt it very fulfilling but we couldn’t represent everyone, we needed a lot more different cancers represented, and we needed different patient populations represented, and in different diversity.
Q: is research advocacy right for me?
Mary Lou Smith, JD, MBA:
I think first of all you have to think research is the answer. And once you do then you want that to be your way of making a difference, so you have to be comfortable with some ambiguity, and you have to be comfortable with the fact that you’re going to need to learn quite a bit about the science and the scientific process.
Elda Railey:
We realize that not all patient advocates will be research advocates because a lot of people aren’t that interested in the science. But Research Advocacy Network really tries to do is find those people who really want to advance research, and be a part of that dialogue, and give them the tools that they need to be successful in research advocacy.
Mary Lou Smith, JD, MBA:
It is a huge commitment and it’s a huge responsibility. And I think that we have to acknowledge that and acknowledge that sometimes we’ll have successes and sometimes we won’t, and you have to be comfortable with that and comfortable with the idea that this is going to take – as you’ve said – a long time.
We have what we call the roadmap to research advocacy and it’s on our website and they can look at that and that will give them some ideas of the opportunities and the education and kind of the all-disposition you need or the personality you need to be comfortable in this kind of setting.
We do have the self-assessment tool on our website too, so they can kind of self-assess. We want to be as inclusive, not exclusive. It’s really you deciding whether this is right for you.
Q: How can I get the education I need to be a research advocate?
Mary Lou Smith, JD, MBA:
There’s a high learning curve, we sometimes call it alphabet soup, because you’ll hear somebody talk about the FDA and the OBBR and if you don’t know what that is, you kind of lose the whole train of the conversation trying to figure out what all those acronyms are. So yes, you have to be willing to learn that, you have to be willing to better understand the science itself, which is ever-changing, it seems.
Elda Railey:
When we started the network there really wasn’t a place for research advocates that really wanted to learn more about the science, learn more about the research process, there really wasn’t a place for them to go.
We do have the Advocate Institute that’s on our website, it’s available, you just register no charges. We really have focused a lot on education and providing those foundational tools to give the science background; we’re not trying to become a scientist but we are trying to become educated enough that we have a confidence to ask the right questions.
Mary Lou Smith, JD, MBA:
We try and make it as easy as possible for people to access the information they need.
Elda Railey:
We have written materials that are free, can be ordered from the website, but we also support that with lectures that are re-housed in our advocate institute. We’ve developed tutorials on genomics in cancer, biomarkers in cancer, clinical trials, clinical trial design, pathology and tissue research, these are usually one-hour lectures; you could apply any time, there’s no charge to listen to, and these are renowned experts in the subject that have recorded these lectures for us.
Mary Lou Smith, JD, MBA:
We do also have some face-to-face trainings. One of them is the focus on research program that we do with ASCO each year.
Elda Railey:
We also provide some collegial opportunities or other advocates from other disease sites – for lung cancer advocates to meet with breast cancer advocates, and to network and to we learn from each other so that we really aren’t just body parts. We’re advocates working together to advance science.
Mary Lou Smith, JD, MBA:
Everybody talks about research advocacy now. When we started we said ‘okay, we’re going to name it and claim it’ and now it’s a common term. Then, it was like ‘huh?’
Elda Railey:
We can be a practical problem solver where a lot of times they’re thinking in a scientific method but we’re thinking in a practical method. So we can help them reframe their thinking sometimes, hopefully.
Mary Lou Smith, JD, MBA:
I think it’s that idea that the science is going to be better, and the science will be more relevant to the patient if indeed the patient voices their at the very beginning.
END OF VIDEO