A Seat at the Research Table: Martha Jean Williams
As a community member, involvement in research can mean many different things. Ms. Martha Jean Williams got involved with research not as a study participant, but as an advisor to the research team. As an African-American woman who experienced endometrial cancer, she was able to lend her voice to help the research team keep the perspective and needs of women like her in mind. Ms. Williams is a part of the ECANA leadership team and kindly shared with us some words about her experience.
Q: How did you get involved as a patient advisor?
MJW: My oncologist asked me if I'd be willing to participate. I had no idea what to expect or what was involved? He mentioned it to me and then I filled out applications. I was accepted as part of the group and was involved for a two year term.
Q: What kind of research teams have you been involved with?
MJW: I was a part of a National Cancer Institute (NCI) project. They would send questionnaires that asked about how to get patients to be supportive of drug trials, how to make the experience for patients better and other studies. I told them they need to be forthcoming, supportive, listen, be available for feedback and care about the person and their actual life experience going through the process.
Q: Did you have any hesitations or concerns about participating in a research partnership? What were they?
MJW: No, I did not.
Q: What made you feel that it would be a good opportunity to be involved with research partnership? What keeps you interested in/excited about working with researchers or research teams?
MJW: For whatever it would have done to make the next person's way easier and lighter, I am willing. I feel like, we make life harder than it needs to be, we all don't have to stick our hand in the fire to know that fire burns you! I just want the person coming behind me to have it easier than I had.
Q: Are there other important elements to authentic, meaningful research partnerships? Do you have any advice for clinicians and researchers who want to engage patients as partners in their research?
MJW: Most of all, be open and approachable. Be clear about what your objectives are, what you want to try, and who your participants are. Be honest with them and get their permission every step of the way. Be clear about what value my being a partner is. It's also really important to provide people with the technical support and materials they need to participate. I didn't even think about the challenges of not being able to get on the internet or print, but it ended up being a problem. Home internet is not the same as office internet! Also, have a designated person that I can bring my questions or concerns.
Q: Do you have any advice you would share with others who are considering working with researchers?
MJW: Make sure to ask: what are the risks? What kind of support do they have for me? Can they support me being a part of it and address any risks or challenges that come up? There is enough resources out there to get what you want and to meet anyone's need. Just as important, assess your personal availability---personal support, health and finances so you can enjoy the experience!