Brandy Parker-McFadden is the executive director and founder of “My Epilepsy Story,” a nonprofit for women and children living with epilepsy. The mother of three, who lives with epilepsy and advocates for patient perspective, is also an ambassador for the Patient-Centered Outcomes in Research Institute (PCORI), where she is on the executive committee of a study. She’s one of the first patients to be active in a study and also serve on the study’s board.
Q: As the founder of “My Epilepsy Story,” how do you help people find their voice?
A: “My Epilepsy Story” focuses on women and children who are affected by epilepsy. It encourages people to share their experiences. If you have a story to tell, it changes everything. You are not just a chart or a graph and a number anymore. Every patient has something to offer. All of our stories are different, but they are all valuable. You never know how your voice is going to help someone else. Just look at me! I never imagined my personal experience would bring me where I am today.
Q: And as a patient advocate yourself, what does your perspective offer to academics and physicians?
A: I believe research studies need to accommodate the patient. I tell doctors all the time, “Without patients, you would have zero research. You have to change the way you approach the patient.” For example, when you have a parent who is taking off from work for a follow-up visit, you should have all the testing done on the same day. Of course, it’s a give-and-take. We all have to play our role the best we can. Patients need research. We can’t complain that there aren’t new medications if we’re not willing to participate in a project.
Q: You served on the executive committee of an epilepsy study at Emory University. What insights did you share?
A: Several of my suggestions were incorporated into the study. I wanted them to have a website, to pay the patients more and reimburse them for travel expenses. Those things were not in the original budget, but they put them in. Also, the study was about the cognitive effects of medicines on children with epilepsy, but they weren’t giving the children a voice. So I insisted that the board incorporate a questionnaire for the children. There was pushback at first, but they did it!
Q: What’s been discovered about gaining patient involvement before a trial or study is formulated?
A: We’ve learned that the patient should be involved in the decision-making process before you apply for the grant because they have a lot of insight into what participants want and need in a study. Many research studies are delayed because of challenges attracting and retaining patients.
Q: Why do people with epilepsy need to take a more active role in their healthcare?
A: The tide is changing in healthcare. Patients need to have a voice, and we have to teach them to advocate for themselves. The medical community should help educate the patient; we know that handing out a pamphlet isn’t working. We need to change the way we’re educating ourselves.
Originally printed in EpilepsyAdvocate, Spring 2015