Advocacy in Action: The Role of Research Advocates in Clinical Trials
Vital Options International and The Group Room presents Advocacy in Action: Focus On Research Advocacy. We bring together the influential leaders of the cancer advocacy community to address the role of research advocates in cancer.
Joining Selma Schimmel (Vital Options International) as co-moderators are Ginny Mason (Inflammatory Breast Cancer Research Foundation), Elda Railey (Research Advocacy Network) and Mary Lou Smith (Research Advocacy Network).
Advocacy in Action: Focus on Research Advocacy at the American Association for Cancer Research (AACR) Annual Meeting 2012 was made possible, in part, by:
Selma Schimmel, Founder & CEO, Vital Options International:
What role do research advocates play in the clinical trials process and trying to encourage more participation by patients to consider joining a trial?
Mary Lou Smith, JD, MBA, Co-Founder, Research Advocacy Network:
I think it begins at the beginning when we’re there at the table, when a clinical trial is being designed, and we can say ‘you know what? That trial is going to be exceedingly difficult for patients to enroll in. Could we do a little different? Do you really need a bone marrow biopsy every month?’
‘Well, no, not really; we only need three.’
‘Then let’s have three.’
So to start there but then we need to obviously take that research into the community and I think one thing that’s important is to give to patients that clinical trials can be an option. It’s not that you’re at the end of your treatment; it’s it could be an option from day one. We’ve got some wonderful trials looking at symptoms, looking at return-to-work issues; I mean there’s lots of trials out there that people can participate in that actually will make them feel a lot better about their experience and supported through their experience because that is one thing they found – people get more coordinated care in clinical trials; it’s done by a protocol. So everybody’s being treated the same; so there’s an adherence to their protocol that’s a benefit to the patient.
Elda Railey, Co-Founder, Research Advocacy Network:
I think as research advocates we have a huge responsibility, not only to have the foundational knowledge of the science but to really help educate our patient constituencies about what it means to be in a clinical trial, what advantages and what disadvantages it may be, but to kind of prepare them for those type of decisions that even pre-diagnosis there is an option from day one, and to empower them to really ask the questions.
If your physician’s not involved in clinical research then find someone who can help you get into a trial if it’s right for you; but it is an option.
What is the relationship and collaboration that exists between research advocates and the numerous advocacy organizations that are out there?
Ginny Mason, RN, Executive Director, Inflammatory Breast Cancer Research Foundation:
I’m specific to inflammatory breast cancer but I’m very good friends with Mary Lou and Elda and appreciate their ability to cross the organ-specific groups, and I think there’s such value in getting out of your organ-specific cylo and realizing that in the end we’re all working on very similar things and that we have so much more power together than we do when we stay in our little corners. Now and then I feel like I have to justify to my board that I do things that are much broader in the oncology community and I tell them ‘there’s real value in that’. During that time I educate people about inflammatory breast cancer, which is important but the collaborations we make and the ways we find to work together are just so powerful, and I think can help speak to the broader oncology community of how important collaborations are.
I don’t have all the answers or all the pieces but sometimes we’re able to bring together really creative groups, which we did recently with a think tank that Research Advocacy Network put together to look at tissue and the importance of banking tissue. That was a really eclectic group of us, and asked to put our initials after our names aside so that we weren’t there as the institution we represented or our medical background or whatever. And those kinds of things are so powerful.
With the numerous advocacy organizations that are out there where not every organization may be has a representative on the research advocate end how do you all engage and help inspire and motivate all of these other organizations to get involved and to raise awareness to their constituency?
Mary Lou Smith, JD, MBA:
The Research Advocacy Network when we formed the organization we knew that our audience would be scientists and advocates, and so we didn’t want to compete with our advocate organization colleagues so we have no patient-base, and we did it on purpose, so we would not be in competition with them.
So what we try and do is we try and work with advocate organizations in joint projects, and so one of them was to do a tissue awareness programs in the community. And we worked with the guilda clubs and the wellness communities in four different cities and….can I tell the funny story?
Mary Lou Smith, JD, MBA:
Okay. We had this really super tutorial for advocates on genomics and cancer. It’s very nice and in fact some of our scientist friends use it for their fellows, which is nice. So we thought when we were doing these programs out in the community that we should have a leave behind, that the majority of the folks that we got –we would have from like 35-65 – well, that’s going to take a long time before we educate the United States doing at 35 to 65 people at a time. So what we thought we could do is we could do a brochure that would be a leave behind, so then they would take that home and their family and friends would ask them and they would have good information to give them.
So liking to repurpose things we took the first chapter of our genomics and cancer tutorial and we made that into a brochure – very nice, very nice. It only took us one more program before we realized that probably genomics and cancer didn’t really play well to the public. So we changed it; changed the name to personalized medicine, we got a woman to look at it who makes it more patient-friendly, and so now we really do have a very nice….
Well, and we took the DNA strand off the front and put a face on it. Amazing. Made a difference.
So thanks to all of you and in particular to Ginny Mason, to Mary Lou Smith, and to Elda Railey for coming together and giving us this opportunity, and including me as a research advocate.
Ginny Mason, RN:
END OF VIDEO