When you think health care, do you picture white coats and clinical trials, or do you see a tapestry of real-life stories and patient voices waiting to be heard? Join me, Dr. BCW, as I sit down with public health virtuoso Pam Cusick, whose three-decade crusade for patient empowerment and crystal-clear communication in healthcare research is nothing short of revolutionary. Pam's candor about her early FDA work during the AIDS crisis, her insights into the rise of direct-to-consumer pharmaceutical advertising, and her unwavering advocacy for patient involvement in research, shines a light on the human side of health innovation. Together, we unpack the complexities and celebrate the victories of bringing patient experiences to the forefront of healthcare design and delivery.
Healthcare is undergoing a seismic shift, with patient-centricity at its heart. This episode peels back the layers of what it truly means to center patients in the health narrative, with a special focus on the transformative power of their input in clinical trial design. Listen to the poignant story of a woman with Fabry disease and the profound lessons her experiences impart about the necessity of empathy and understanding in treatment and research. As Pam and I explore the broader implications of patient feedback, we confront the realities of health equity and the vital role that patient voices play in steering the healthcare system toward more equitable, effective outcomes for all. Don't miss this deep dive into the essence of what makes health care not just a service, but a partnership.
Thank you for Listening to Beyond Clinical Walls Podcast.
To find more from Dr. BCW
When you think health care, do you picture white coats and clinical trials, or do you see a tapestry of real-life stories and patient voices waiting to be heard? Join me, Dr. BCW, as I sit down with public health virtuoso Pam Cusick, whose three-decade crusade for patient empowerment and crystal-clear communication in healthcare research is nothing short of revolutionary. Pam's candor about her early FDA work during the AIDS crisis, her insights into the rise of direct-to-consumer pharmaceutical advertising, and her unwavering advocacy for patient involvement in research, shines a light on the human side of health innovation. Together, we unpack the complexities and celebrate the victories of bringing patient experiences to the forefront of healthcare design and delivery.
Healthcare is undergoing a seismic shift, with patient-centricity at its heart. This episode peels back the layers of what it truly means to center patients in the health narrative, with a special focus on the transformative power of their input in clinical trial design. Listen to the poignant story of a woman with Fabry disease and the profound lessons her experiences impart about the necessity of empathy and understanding in treatment and research. As Pam and I explore the broader implications of patient feedback, we confront the realities of health equity and the vital role that patient voices play in steering the healthcare system toward more equitable, effective outcomes for all. Don't miss this deep dive into the essence of what makes health care not just a service, but a partnership.
Thank you for Listening to Beyond Clinical Walls Podcast.
To find more from Dr. BCW
Hi everyone. It's Dr BCW with Beyond Clinical Walls. I'm excited to bring my next guest forward. Her name is Pam Cusick. She is a public health professional. She has a 30-year background in expertise in study, design, implementation and analysis, as well as a background in public health, communications and research, where she hopes to raise awareness and raise the importance of sharing patient and caregiver stories and hopes of reducing inequities and disparities. She has such an amazing background so I'm just going to kind of show her a couple of those pieces in there. She was the special projects manager at ARTX, where she managed key corporate initiatives including research, public relations, marketing and human resource programs for a management consulting organization. She has also partnered with multiple healthcare companies and consumer goods, as well as entertainment industries such as satellite radio and ARTX. Pam, thank you for joining me on Beyond Clinical Walls. It is a pleasure to have you on the show and I would love for the listeners to learn a little bit more about you.
Speaker 2:Sure, I'm so happy to be here. I started my career in a, as you said, public health research organization working in the late 80s on an FDA program focused on bloodbanks and the AIDS epidemic and it was a really interesting project where we focused the research on communication style, so figuring out what was the best way to screen people who were at risk for HIV from the blood supply. We tested and found that well surprise, direct communication and clear communication helps people to understand what the information is and what they should do. So that kind of spurred my career focusing on research and evolved into working on other programs for CDC and NIA and I really loved and enjoyed those projects because you could see the larger impact on the different disease communities but the public at large. I've worked on different vaccine programs and things, so it was really interesting. And then, fast forward, I had an opportunity to work for a pharmaceutical market research company in the late 90s when direct to consumer advertising came on the scene and the company we worked for really had focused mostly on physicians because that's the only person you could go to to communicate that information to. So with the advent of DTC advertising, they needed to know how to communicate with patients, how do we get this message across? So I worked for some time in that organization and that was fantastic and really interesting work. My focus was mostly focus groups and interviews, more qualitative research, but working on a lot of different interesting programs and figuring out how is the best way to get patients to say, ask their doctor about a particular program or medication. So that was a fantastic and interesting job.
Speaker 2:In that position I met Wes, who started rare patient voice. So fast forward many, many years. He started rare patient voice and I said, hey, when you need somebody, let me know, because I knew this is something that was really interesting and really needed. I've been here now for the past seven and a half years and what we do is we connect patients with all kinds of research opportunities. So everything from interviews and focus groups and surveys to clinical trials where patient insights are sorely needed.
Speaker 2:Back to that, my prior life, when we were doing the early DTC work, most people only went to physicians to say, well, what do you think the patient would like? What do you think the patient would need? And now we've come to a place where patients can tell you well, this is what I experience and what I really need is X and give their insights about clinical trial design. We often think from a scientific standpoint okay, well, we need to draw this many vials of blood, is that necessary? Or is that something that you could take two vials of flood and make it a more comfortable experience so that the patient would want to stay in a clinical trial? So it's those sorts of insights that you have to get from the patient and figure out what it is they need. What do they want?
Speaker 2:Oftentimes we'll have clients who they might have developed an app for a particular patient group as an example, but maybe they haven't ever gotten any input. Is it something that a patient would need? What they would want? Is it something that they can use? And if they, if you, once it is designed, you should test it with them, because they're the people who will use it. So there's so many unique and interesting ways that patients can participate in research. Parents of young children also participate in these studies, and caregivers as well. The more that we do, the more work we do, the more people we connect with. The need is ever growing. Everyone wants to be patient-centric, but I think it's only really coming to pass now, where what's being taken seriously and more and more patients are joining these organizations like ours so that they can share their voice and be heard, and that's a really wonderful thing.
Speaker 1:Pam, I always like to know the history. You talked about communication. You talked about how you were working with blood banks and seeing a divide in really being able to have a strong form of communication and, as you and I know, that is vital to the delivery of healthcare. I'd like to know a little bit more. What made you decide to even get into communication or even healthcare.
Speaker 2:So it really was research. When I was in in college and also in grad school, I was able to participate as a research assistant and really like that, you know, developing a survey and finding the results and analyzing those, and then the same with qualitative, interviewing people. I'm really getting down to why do they think about things this way and what is it that drives their? What's their motivation and understanding kind of the backstory of things. I really love that. So when I left graduate school, I wanted to work for a research organization and I didn't have a particular area I was looking at and it happened that this organization is the American Institutes for Research, had an opening. They needed a data collector, really for this project, and it just was meant to be. It was a great job, a really interesting organization and within that my experience there, I was able to work on projects that had to do with education, that had to do with healthcare, that had to do with test design and all sorts of interesting things, and I really found what I liked best was the healthcare focus Helping patients understand things a little bit better, helping them to make informed decisions, because you've created a pamphlet that is written in a clear and direct way so that they can read it and make a decision that is good for their health and make sense to them. So it really was that first job that I had that helped me decide. Yes, I wanted to be in research, but which area did I want to focus in? And so healthcare was where I landed and continued on and, as I said, some really interesting projects.
Speaker 2:I worked on a project for kind of a spin-off of that blood bank project for the WHO and I was in India interviewing people about how their blood banks work and how they made decisions about who could donate and so on, and it was fascinating and the cultural differences in what we require and what they required at the time. You know, people could have an operation If a family member donated blood. That was just their process. But from a standpoint of risk and HIV and the issues that we were working on at the time, that wasn't the best idea, right, because you're going to want to donate for your family member who needs to have surgery, but you might not be the best person to donate. So, you know, understanding that there are cultural differences and ensuring that you respect those, and I couldn't go in and say, well, you can't do that because that wasn't my place number one but two. You know they have a process and a plan and needed to do things in a certain way and you have to respect that.
Speaker 1:You know, I often the one question I always ask on this podcast is why do you do what you do? And, as you're sharing your story of even that first research job and kind of looking at the analytics but then also thinking about outside of that, what could you do to help patients not only advocate but also think about respecting different cultures, figuring out that kind of central piece in order to advance whatever you're trying to do. I think it's so important and for those listening it's a nice kind of reminder that you're not constricted to one area in whatever you're doing. And if you want to reach more people or if you want to do more, there's opportunity. When you kind of just find that passion, you lean into that curiosity and then just build with it. And that's what you've been able to do.
Speaker 1:When you know I read your bio and hearing your story, this kind of roadmap that you have created for yourself, all centered around patience and you talked about this patient centricity.
Speaker 1:That's the goal of all of us. We always hear about put the patient first. I think when we talk about that, as you mentioned, there are so many different elements that have to be in play to put that patient first we can take a step back and look at whether it's an app we're building, whether it's, you know, a design, a study If we focus on. Does it have that patient at the forefront? Are we being sensitive to their culture and all of those areas that are so important? That's when we're really going to be able to move that needle and advance health equity, and your work is really about sharing the stories of patients and caregivers, and if you haven't taken note of their thoughts, their concerns, their experiences, you're not able to really make them the focus. I'd love for you to kind of tell me some of the things that you're working on right now that are really kind of transcending health care.
Speaker 2:I think one of the things that is really interesting to me and I alluded to this before is the involvement of patients in protocol design for clinical trials. That, to me, is huge, because there is so much involved in a trial. There was a woman that I worked with who was in a trial. It was in multiple phases of a trial for Fabry disease over the course of 12 years and she would have to fly to a location and fly back multiple times a year and all she was doing was giving her health history and getting a blood draw, and she said in the conversation that we had that if she had realized, or if someone had realized that, well, how about if you send her to the local hospital and they do it? She said I missed all that time with my family, just that going back and forth and back and forth. And because it's a condition that is genetic, she wanted to be in the trial and make sure she helped. But the truth of the matter is it was not done in a way that was suitable to a patient, and so I think that having patients involved in trial design is absolutely essential.
Speaker 2:I don't know when it began, but I don't think that people have been doing that for that long and I don't know if everybody does.
Speaker 2:Hopefully they are doing that now more so.
Speaker 2:But finding out is if I have to bring my child across the country multiple times, and that's a burden of itself, but then how many times are you going to draw his blood while we're there?
Speaker 2:Because recruiting for clinical trials is really hard. There's so many inclusion and exclusion criteria and people don't always get to that next step, and so now if you have someone who qualifies, you want to keep them in the trial, and doing that is probably one of the hardest things, because if you don't talk to patients and find out before you design the trial, how many times can I get you and your child across the country before you think you would not come anymore? Those are important questions to ask, because if my child is screaming and crying because they've been stuck four times in a visit, I might not be able to or want to bring them back, and so enrollment is one thing, but keeping people in a trial is really, really difficult. So I think that's one thing we're seeing more of is people being invited to those kind of design sessions where they're talking about the protocol and an understanding sort of what can a patient bear in one visit and what can they handle and still stay in the trial, and I think that's really important.
Speaker 1:I think that is such an important piece that you mentioned. Whether they're in a clinical trial, whether they're in the hospital, whether they're in an office visit, you have to think about what that patient is taking in what they're experiencing and what is the long-term goals for that person as well. It's a mutual relationship that I feel is often forgotten. So when you were bringing up her story, you know how much time was taken into sharing in advance, so she would know. You know what to expect. And when you hear those kind of barriers that could be like the travel and so forth, what are we doing to augment that, to mitigate that beforehand? So you make such an important point that before we even start the process, looking at it holistically and thinking about what parts are really prohibitive for this trial to be successful, and then also taking another step back and look at, if you didn't even have enrollment, what things were prohibitive for you to even get enrollment. So there's all those areas, and so that struck me. But please keep, please continue sure I mean it is.
Speaker 2:You know they're very interesting Topics because there is, you know, there's a lot to it and in terms of what can help patients and keep them in trials. There are organizations that help with travel and, and you know, and payment and things like that, so that you don't have to pay out of pocket for a flight or hotel, but I don't know that that's always used either. And that's another piece that if you were to ask patients what are the things that keep you out of the trial, what makes you want to be in a trial or not, some of those things have to do with logistics. We did an internal study with patients and that was a big issue. You know the logistics, figuring out how I'm gonna get not only myself or my child to this trial, but what am I gonna do with all my other kids that are at home and what am I gonna do with my house, my bills, my job and and there are some organizations that have programs to help with those things. So, knowing that you know ahead of the trial, here are the things that are barriers, what can you do to help with those things, and then do those things Because you want to keep people in your trial. I mean, in the end of the day, if you can, you know, fully enroll and complete a trial and your product can go to market, you can help all of those patients and more. And if you don't do the legwork up front and hear from patients and caregivers and what they need and what Can help them to continue on, that product might never go to market because it might net the trial might not and or it might take so long you know it might not, it might be too late for some people. So that's really important.
Speaker 2:Another thing that I've seen more often, which I love, is that oftentimes once a trial is done, there's a publication of some sort and it's in usually in kind of physician speak or scientists speak.
Speaker 2:But we see some of our clients who are actually making these into patient friendly research results. You know reports, so those things that you know. I can then see oh well, I have this condition and there was this trial. I'm gonna bring this to my doctor because it makes sense to me, as opposed to seeing something with a bunch of scientific jargon and not really understanding. So in the end, does it really make sense for me or not? So we do have clients who are bringing patients into that process to help make things more understandable medical publishers. That's another area where there are Enumerable journal articles or journals focused in different areas so psychology or psychiatry and and heart disease all these different journals with great information that sometimes has no patient perspective in it. It's about the patient and the treatment. But I know that there are some medical publishers that are working in those areas to bring in that sort of patient focused language and understanding so that it's usable for patients, which is fantastic.
Speaker 1:That part is so important because when we talk about health literacy, if it is not digestible, if it's not informative and engaging in all three of those pieces, you're not able to really make those advancements or help that patient in whatever you're trying to put forward and your example is a great example and respect to you've got these results from a clinical trial or these outcomes. How can the patient use it? How can the patient deliver to their physician and have a robust conversation that leads to a different health outcome or leads to that patient leaving that exam room feeling informed and feeling like they can make the best decision for themselves or their family members? And that's something we have to kind of figure out. As we're doing it. People are reshaping that landscape, but we have to invest in that.
Speaker 1:When you brought that story up, payment makes me think about my med students and my residents.
Speaker 1:I always tell them I'm like, first and foremost, we.
Speaker 1:I feel as a physician, it is the best job ever and I'm so grateful to be able to deliver care and it's something that you should cherish.
Speaker 1:But you can be extremely intelligent, have these amazing board scores, but if you can't deliver the information to your patient where they feel like they can consume it, understand it and have a relationship with you. Thank you. It doesn't matter in the end, because that information has been lost and not been able to be put forward, which is why, as a physician, you want to help that person and so being able to reshape health literacy and put it in a way that is non-judgmental and I think that part we have to continue to think about that through all areas of health care delivery in a disarming way and hopes that that patient can not only feel informed for themselves but create that generational form of health literacy for their family members and so forth, because that again, not only for just in that patient interaction, but just think about their interactions with clinical trials, their interactions with physicians, health care providers, because all of that also encompasses trust as well.
Speaker 2:Right, absolutely.
Speaker 1:So, so important. Well, I loved this conversation. I think this is going to be part one of many where we talk about other sectors in health and talk about the other advancements that you and your company are doing to to really unroof the health care system, the landscape, and put patients first, and that's why I was so excited to connect with you, because that is what your core mission is, and it's been lovely. So please share with everyone how they can get in touch with you.
Speaker 2:So there, I mean there. If someone wants to get in touch, they can find me on LinkedIn or email me at Pam dot Qsic at rarepatientboyscom. I'm happy to you know answer any questions people have. If there are patients that are interested in participating in research, you can go to our website, rarepatient voicecom, and there's a sign up button where you can go and you can learn more. There's all kinds of information on the website, but you can sign up and participate in research and share your voice and be involved in making health care a better place for all patients.
Speaker 1:Excellent and I love that. You are honoring being heard. You're honoring their experiences and then putting it forward to help, and that's the goal. So thank you, pam, again for joining me on Beyond Clinical Walls. This is Dr BCW. As always, I like to extend a level of gratitude for your time and your energy. Don't forget to subscribe and turn on notifications so you don't miss my next upload, and if you found this information helpful, please hit the thumbs up. It really helps the channel, as always. Thanks for watching and thank you for your support.