Alicia Morgans: Hi, I’m thrilled to have here with me today, Tom Farrington, who is the Founder and President of the Prostate Health Education Network, PHEN, located in Boston, Massachusetts. Thank you so much for being here with me today.
Tom Farrington: Alicia, it is great to be with you.
Alicia Morgans: Thank you. I am so excited to speak with you about, how we engage best with patients and really bring them into the discussions about clinical care, clinical trials. How do we really partner with people to get the best outcomes that we can out of their care? Let’s start with thinking about clinical trials. I know you’ve thought a lot about this. How do we do that? What’s missing with patients in clinical trials?
Tom Farrington: Well, I think what’s missing is that patients are really not that aware and not that educated about clinical trials, especially the potential benefits. When patients are looking for treatments, what we’d like to tell the patient is, consider clinical trials as another treatment option. I think it’s important to get that message out because, if patients believe that they are being experimented on, then this may turn them off. But if they’re saying, hey, we’re offering you an additional treatment option, that may only be available through this clinical trial, I think this opens their eyes and their mind towards considering a clinical trial.
Alicia Morgans: I think you bring up a really good point because, experimentation is something that has happened many, many decades before. There were terrible things that happened in the name of science. Again, decades and decades ago, before we had all the rules and regulations that we have in place today to really keep patient safety as our number one priority. And certainly, prioritizing, for any individual doctor, the person who’s sitting in front of him or her. Are there things that you can say to help a patient get over those fears? Because, in some communities especially, those are very real fears, and they may have had family members who were in situations where they felt like that was happening.
Tom Farrington: I think the history of clinical trials and the period of experimentation is one that lends itself to kind of a lack of trust. But again, from the work that we do with the patients in the community is, we don’t find that the overriding barrier, interestingly enough. What we find is that, the people are not aware of the clinical trials. I think, certainly, letting people know that there are safety safeguards involved in clinical trials is important.
But when we talk with patients about clinical trials, they don’t go back to the point that, hey, I heard about Tuskegee, for instance. What they may say is, I may not trust the medical community that much, or I don’t know why I should be in a clinical trial. I don’t want to be experimented upon. So I think it’s really, moving forward with information today. I see sometimes, people in the medical profession go back to history and bring up history that could be detrimental to convincing a patient to participate in a trial when it’s not necessary. I think we want to start from the standpoint that, let us talk to you about the benefits, things that you can realize today. I think that would make a big difference.
Alicia Morgans: I appreciate that, and I think … I appreciate you really clearing that up, too, because, it doesn’t necessarily mean we have to think about history. There can be a mistrust, just even based on today. And if we use information, clear language, and connect as humans, then I think that we can overcome a lot of that. I think one of the other concerns that I hear, and this is from all kinds of patients, education level, socioeconomic status, anything. They say, I’m really concerned that I’m just not going to get a treatment. I’m going to get a sugar pill or placebo. So really, why would I want to be in a situation where you force me to not get what I need to take care of my cancer? How do you address that those things?
Tom Farrington: I think that’s an important point because many patients do feel that way. If I go into a clinical trial, I will either get treatment or I will get no treatment. Making sure the patient understands that they’re going to get the standard of care is important. And to have an opportunity and the treatment along, to get maybe a treatment that may be better than the standard care. That’s the objective of the clinical trial. But making sure that they understand that, they’re going to get treatment is very, very important.
Alicia Morgans: I would completely agree. I always emphasize to my patients, everybody on the trial gets this standard of care treatment, whether that’s chemotherapy or a pill or whatever it is. This is the standard treatment. Everybody across the board gets that, and we flip a coin and half the people get standard of care, which everyone’s getting, plus some bonus. So there always is an active treatment.
There is always that participation. There’s always the research coordinator, the research nurse, the doctor. We’re all watching your labs and your scans, and we’re giving you an active treatment. Because, like you said, otherwise, why would anyone do this? But recognizing you may have access to something standard of care plus, I think is an incentive.
Tom Farrington: The other thing that we like to emphasize about clinical trials is, too, there are benefits of maybe better healthcare with a clinical trial. More attention, and also, there’s a cost factor at times, the treatment, the standard of care, and the experimental drug at no cost. Those are very important factors, again, that patients don’t understand. We have a, what we call our clinical trials rally. We reach out to communities with information about clinical trials. We do it through symposiums on the ground, we do social media, we do a webcast all on clinical trials. We try to make sure that the patient community understands what clinical trials are and the potential benefits.
Alicia Morgans: Absolutely. One of the other amazing things that your group does is, really try to explain the whole prostate cancer journey, including things like clinical trials. But even sharing information within a family and making sure that you share. If you have prostate cancer you should tell your family members, because maybe they could be helped by that knowledge as well. But you’re doing this through art. Can you tell us a little bit about that?
Tom Farrington: Absolutely, absolutely. When I was diagnosed with prostate cancer, and I’m a 19-year prostate cancer survivor, I was diagnosed three months after my father passed from prostate cancer. And one of the things that I realized was, I didn’t know a thing about prostate cancer. In the earlier years, I had lost both my grandfathers. But we did not talk about prostate cancer. So when I began PHEN, one of the things that I emphasized was breaking the silence around prostate cancer. Silence kills. So one of the things that we’ve been doing with our outreach activities is, we’re touring play called Daddy’s Boys, and it’s an entertaining play. It’s about a father who has three sons. A father is diagnosed with prostate cancer, and it forces the three sons and the family, in this case, an uncle, to come together to talk about prostate cancer.
They realized, for instance, that the uncle had not told them that he was a prostate cancer survivor. And the play points out that, if the uncle had shared that information, the father was diagnosed with advanced disease, maybe the father could have caught it earlier. Those are some of the things we emphasize, that it’s very important to talk about prostate cancer within the family setting. And not only just within a family setting, but we also have a network of prostate cancers across the country. We profile them at different times of the year, and we convince them to talk about their journey, the symposiums that we have with churches and community groups around the country. We always have a panel discussion, a survivor panel, where the survivors talk about their journey. And it’s amazing how it opens up.
I could tell you a story. One time I was invited to speak, and so they gave me two hours on the program, and I’m saying, well, I wouldn’t listen to myself for two hours. So what I decided to do was bring other men in the audience, who were survivors, to come and join me. We had a great discussion, and it was moderated by a bishop. It was his program. And after that program, after all of that discussion, the bishop came out and said for the first time he’s sharing, that he’s a prostate cancer survivor. This made quite an impression upon his members, and it had an impact upon him and the members. So it’s so important to share information, break that silence.
Alicia Morgans: You’re right because silence definitely can kill.
Tom Farrington: Silence can kill. Knowledge is the best defense against prostate cancer. Silence is a way to lose the battle.
Alicia Morgans: Absolutely. Like you’re saying, it’s brothers, uncles, grandparents. But it’s also women in the family, because there are some hereditary forms of prostate cancer related to B or CA1 and 2, potentially, where a very high rate of breast cancer or ovarian cancer in a family can also increase the risk of an individual having one of those B or CA2 mutations, for example, and having a higher risk of prostate cancer.
So, it’s sharing with your whole family. It’s being open. I think after we get over that initial fear of being honest, there will be, I imagine, in many cases, most cases, I hope, an outpouring of support and caring for that person who’s going through something. And I can’t imagine how much more difficult it must be when it’s done in secrecy and silence.
Tom Farrington: Absolutely. I’m going to point to my experience. It was my wife who forced me to get a physical exam where I was detected with a high PSA and learned that I had prostate cancer. With all of our programs, we promote them as family events. We’re not just interested in speaking with men. We’re not just interested in educating men.
I’ve often said that, if I had my choice to educate men or women, I’d choose women, about prostate cancer. The reason is that men will understand what to do, but they won’t always do it. If the wife or a sister or mother understands what should be done, they will force the man that they love to do the right thing. So we focus on the family. Even without our support group, we make sure that the family is invited. The wife and the other females are so important in the fight against prostate cancer.
Alicia Morgans: Tom, if people want to get involved with PHEN, and I bet a number of people do, are always signing up. How do they get involved?
Tom Farrington: You can go to our website, prostatehealthed.org, or what we call … We have, under our umbrella of initiatives, we call it Rally Against Prostate Cancer. So you can go to rapcancer.org. We love to hear from everyone. We love to have people join us. We want to continue to spread our wings around the country, and we invite all to look us up.
Alicia Morgans: Wonderful. Well, thank you so much for sharing your insights and your experiences with me today. I really appreciate your time.
Tom Farrington: Thank you for this opportunity.