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In this heartfelt episode of Remarkable World Commentary, Donna J. Jodhan sits down with Pam Cusick, Senior Vice President of Rare Patient Voice, to explore how patient-centered healthcare research is reshaping the relationship between people living with medical conditions and the companies developing treatments, products, and services for them. Pam traces her 30-year path in the field back to her first job working on FDA blood-donor screening research, then walks through how Rare Patient Voice has grown into a global community of more than 200,000 patients and caregivers spanning 1,500+ conditions across nine countries, compensating participants $120 per hour and paying out more than $8 million directly to patients and caregivers since the company was founded in 2013. She details the straightforward sign-up process, the deeply therapeutic value participants describe in finally being heard without judgment or fear of burdening loved ones, and what Rare Patient Voice’s recent acquisition by Konovo, a tech-first healthcare intelligence firm backed by Frazier Healthcare Partners, means for expanding those opportunities even further.
The conversation takes an especially personal turn when Donna shares her own story: born with very little vision, gaining remarkable sight through a cornea transplant as a teenager, and then losing it again in 2004 to a severe retinal detachment. She asks Pam, candidly, whether any current research into sight restoration or vision-related implants might offer her a place to share her voice and help others walking a similar path. Pam commits on the spot to searching her client database, connecting Donna with Rare Patient Voice’s patient advocacy team, and raising the possibility of featuring Donna as a “Weekly Warrior” on the company’s social channels. The episode closes as a living demonstration of the very principle Pam champions throughout the interview, that lived experience, when genuinely listened to, is where better products, better services, and more dignified care begin.
TRANSCRIPT
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Podcast Commentator: Greetings, Donna J. Jodhan, LLB, ACSP and MBA invites you to listen to her biweekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills and expertise in access, technology and information. As someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.
Donna J. Jodhan, LLB, ACSP, MBA: Hello everybody, and welcome to another episode of Remarkable World Commentary. I’m Donna J. Jodhan, a lifelong disability advocate and one who sees the world mainly through sound, touch and stubborn optimism. I am a law graduate and accessibility consultant, an author, lifelong barrier buster who also happens to be blind. You may know me from a few headline moments, as in November of 2010, I won the landmark charter case that forced the Canadian government to make its websites accessible to every Canadian. Not just to cited ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law. And most recently, on June the 3rd, 2022, I was extremely humbled by Her Late Majesty’s Platinum Jubilee Award for tireless commitment to removing barriers. When I’m not in a courtroom or in a committee room or in a pottery studio, you’ll find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. Everything I do circles one goal, and this goal is to turn accessibility from an afterthought into every day practice. I invite you to think of this show as our shared workbench, where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today’s conversation, let me shine a quick spotlight on today’s guest, a change maker whose work is every bit as remarkable as the world that we are trying to build. I am pleased and privileged to welcome Pam Cusick to the Remarkable World Commentary podcast. Welcome, Pam.
Pam Cusick: Thank you so much for having me, Donna.
Donna J. Jodhan, LLB, ACSP, MBA: It’s my pleasure. So, Pam, you have spent more than 30 years helping organizations to listen carefully, act responsibility, act responsibly, and inform decisions. Before we get into the details of what you do today, I would really love for our listeners to hear your story. What drew you to into health care research in the first place, and what has kept you passionate about it for three decades?
Pam Cusick: So I can go back to my first job. I worked for a social science research organization. And the, the project that I was first hired for was to, it was for the FDA and it was to improve screening for blood donors. And so I spent months and months in blood collection sites doing administering surveys and then doing the analysis. And what was really remarkable about that was we found that answering the way you asked the screening questions of people really made a difference in whether they answered honestly. So at the time, there were kind of indirect questions that were asked around risk factors for HIV and then more direct questions. And that’s what we were testing. And we found that there was a statistically significant difference where people would self-identify and ask for their blood not to be used for for transfusions because they felt they had a risk factor, but they didn’t want to say it, they didn’t want to say it during the interview. So that was just like a pivotal moment where I really saw the impact of what I was doing, really from end to end. And it it kind of kept up the whole time. You know, from, from then until now, I’ve worked on so many interesting projects around healthcare and disease areas on advertising for public health issues and things like that. And it, it really is it really makes you feel good when you feel, when you can see that you have made a difference and that the work you’re doing is changing lives. And so that’s what’s kept me with it.
Donna J. Jodhan, LLB, ACSP, MBA: Just a quick question offline. I once went to give or to donate blood and I was told that I couldn’t do that because I had a cornea transplant. And they said that because it’s a foreign body in within my system, I couldn’t give blood. Is this true?
Pam Cusick: I actually don’t know. I know that the different criteria are added at different times, so it may be if you have had a transplant you are not able to give. I know certain being exposed to certain conditions being in certain countries, there are all sorts of, of things that might seem arbitrary but are actually, you know, impact the safety of the blood supply. So it could be that somehow having had a, a cornea transplant impacts the, you know, I guess the, the potential for transfusions and someone else, I really don’t know that part of it.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, okay. Okay. You are the senior vice president, that rare patient voice. And this is a company that connects patients and caregivers with researchers who need their perspectives. For those listeners who may not be familiar with how healthcare market research works, can you walk us through what our patient voice actually does and why it matters so much to the patient community?
Pam Cusick: Of course. So we’re patient voice. We connect people with all kinds of opportunities to share their lived experience with different medical conditions. So there are pharmaceutical companies, medical device companies that are looking for patient insight about a product or service that they either are thinking of developing or something that they have already developed and they need input on, or maybe it’s already on the market and they’re looking for how to advertise it. It really spans the whole whole Lifespan of of drug development and device development where patient voices are needed. Now, if you go back to the really the 1990s there, that’s when the direct to consumer advertising was approved. So in a lot of countries, you can’t advertise directly to consumers with for blood, for blood, sorry for for different drugs. But here, of course we can. But it wasn’t allowed prior to that. And what the most common thing to do would be to, was to ask doctors what they thought patients thought. So instead of going to the source pharmaceutical companies and researchers would go to the doctor and say, well, do you think a patient would take this drug if it had these side effects? And the doctor would say, sure. Well, because, you know, if it if it cured this, then they would certainly do that.
Pam Cusick: But then you ask the patient, the patient would say something entirely different. So it, you know, came to a point where patients were, you know, no longer wanted to be in the background and they had the opportunity to share their voices. So we have built a community of over 200,000 patients and caregivers who we connect with, with these opportunities to be in a focus group or do an interview or complete a survey where they’re sharing about their experience or, or commenting on a medical device or a program that’s out there in the world and helping to make that better. And the reason it’s so important is that patients are the experts on their conditions. They live with those medical conditions day in, day out, 24 over seven, and they really know more about their life lived with that medical condition than anybody else. So asking a doctor is great. It only gives you part of the picture though. So here when we are, and when we allow patients to share their experience and share their voice. You create better products. You create better services that serve those people who actually need them.
Donna J. Jodhan, LLB, ACSP, MBA: So really, it’s all about teamwork between the researchers, the doctors, and the patients, right?
Pam Cusick: Absolutely. Yes, definitely.
Donna J. Jodhan, LLB, ACSP, MBA: And what is some or what are some of the most you know, what do patients come? What do patients find most important at the top of the list when it comes to research?
Pam Cusick: Well, you know, they the comments we get back from patients are often that they feel so valued and they feel like it’s almost therapeutic. They’ve been able to share this, you know, this lived experience with someone who really understands their condition and understands, you know, the, the, the treatment area. So when they talk about maybe the side effects or they talk about, you know, how their mobility issues, for example, they’re talking to someone who really has done some deep research and understands their condition and now is eliciting kind of more granular detail from those patients. And they really feel like they’re, they’re being heard and they feel like they’re valued for their time and their experience. Speaking of valuing them for their time and their experience, we also pay them for their time, which I did not mention. They earn $120 an hour for participating in this research. Which, you know, I think is a, you know, a nice amount for spending, spending an hour with someone, but more importantly, they really want to be able to make a difference. They want to help other people who might be diagnosed with that condition later on. Perhaps that person could skip a step and, and be you know, maybe avoid some pitfalls that they did a lot of in rare disease, especially people are often can take them ten years to be diagnosed and before that they’re diagnosed with 7 or 8 other things. So for patients who are, you know, living today with a particular condition, if they can help others to kind of not be misdiagnosed, that’s also very important to them.
Donna J. Jodhan, LLB, ACSP, MBA: You do much work with blindness related research.
Pam Cusick: We do have have projects that are related to blindness, vision loss, other glaucoma, things like that. So there, if there are people working on a product or a program for people with blindness, then we will likely get requests to connect people who are blind or who have vision loss with those projects.
Donna J. Jodhan, LLB, ACSP, MBA: At the end of this interview, I’d just like to mention my story and see whether, you know there is any possibility for some sort of teamwork with you, but let’s let’s move on.
Pam Cusick: Absolutely.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you. Rare Patient Voice has built a panel of more than 200 000 patients and caregivers caregivers across more than 1500 diseases in nine countries. That is an extraordinary number. How does your team go about finding and reaching patients, especially those living with rare conditions, who may feel invisible in the broader health care system.
Pam Cusick: So we meet the patients really where they are. And by that, I mean we go to a lot of patient events. So we might go to a National Hemophilia Foundation conference or a national sickle cell conference. And we exhibit there. We set up a booth and people can come and talk to us and we’ll explain what kinds of research they might be involved in. And if they’re interested, they can then sign up with us. Some of these events are more focused around rare disease. Some of them are more common conditions. But we try to go to a wide variety of, of events so that we can meet as many people as we can to, or, and invite them to join us. The other way that we meet people is through connecting with them through what we would call referral partners. A lot of organizations would call it an affiliate program, where those people are kind of like ambassadors for us. And they may have a community, a regional community of, of patients with the one particular condition, right? And they will can reach out to their community. And if people sign up to participate in research, we then donate money back to their organization to help to help defray their costs or support them. So some of those are individuals. Some of those are organizations. But it’s, it’s been a nice, a nice way to meet and connect with people. We now have over 6000 referral partners all around the world who help us to connect with patients and connect with family caregivers and bring them into our community. So we can offer them opportunities to participate in research.
Donna J. Jodhan, LLB, ACSP, MBA: Any affiliates with Canada?
Pam Cusick: We do. We have we actually have a community of patients in Canada. I, I would have to look up the number, but it, it could be somewhere around 20,000 or so patients and family caregivers in Canada right now.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, terrific. One of the things I find so compelling about rare patient voices is that it was built on relationships rather than technology. One conference at a time, one walk at a time, one advocacy partnership at a time. And as someone who oversees everything from business development to patient advocacy to marketing, how do you maintain that personal community first approach as the company scales to a global leveller.
Pam Cusick: So I think, you know, the the key really is to, you know, go to these events to interact with the patients. You know, that’s the, the first thing we, we try to do and, and keep our, you know, our foot in the door. So we are actually talking to patients and not too far away from that. The other thing is we are constantly interacting with them through our patient advocacy team, through our our research team that, that connects them with we call it field operations. So they are the ones who are connecting them with the researchers. And they will be emailing with the, with the patients and with the caregivers and, and answering questions and sometimes getting on the phone with them. So I think staying available to people when they have questions, when they want, you know, they need support. Our patient advocacy team is very, very active on social media. So they interact with our community on Facebook and with threads and all these things. I don’t know about Instagram and tick tock, tick tock.
Donna J. Jodhan, LLB, ACSP, MBA: Tick tock, tick tock.
Pam Cusick: Yeah, exactly. All of these different platforms where they’re meeting the patients in our community and they’re, they’re highlighting, I think every other week, maybe it is, they’ll highlight a, or maybe it’s weekly, a weekly warrior and tell about that person’s story on our social media. So people, other people in the community can see that they’re not alone there. There are people like them out there in the world, and particularly in rare conditions, you know, it can be very isolating and lonely. So when you can connect with other people who you see, oh, they have the condition that I have, or they have a similar condition to what I have. I think it just makes you feel a little bit less lonely and, and I I think that also helps them to enjoy and really trust our, our community and our organization because we’re trying to connect deeply with them.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this resonates so much with me because when I talk to you after we finish online here I’ll tell you my little story.
Pam Cusick: So okay.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you. So your company has paid more than $8 million directly to patients and caregivers since it was founded in 2013. That number sure tells a very powerful story on its own, but I would love to hear what that means from the human side. What do patients and caregivers tell you about what it feels like to be compensated for sharing their experiences. And what does that compensation represent? Beyond the dollar amount.
Pam Cusick: So I think I’ll answer the second part first. So beyond the dollar amount it represents that patients are being valued by the by industry. So by pharmaceutical companies, by agencies that are creating products and services for them, by medical device companies. They are valuing the patient and their insight that they have something important to bring to the table. So I think that’s the beyond the actual dollar amount. It’s really a, a bigger, a bigger thing that we are, we are now valuing these people who are the people that we are serving, right? You know, if you’re developing a product for somebody with a, in a particular treatment area, those are your your customers. But, you know, again, as I mentioned before, previously, no one was asking them about it. So I think it does represent this a, a shift to really valuing those people and their insights. You know, in terms of what they feel, you know, what the patients and caregivers tell us it’s, you know, feeling like they’re finally heard you know, the, the isolating part of having a medical condition which, you know, I hear often is that people, they don’t always want to keep telling their, their family members about their struggles, about their pain, about their challenges, because they feel like they’re burdening their family. And you know, and, and family members want to support their, the patients in their lives.
Pam Cusick: And that is, that is true. But I can understand why they, you know, sometimes they don’t want to continue to share, you know, the daily pain or the daily struggles with just getting out of bed. And so they keep it all inside. But then when they have the opportunity to share it with a researcher, it’s like the floodgates open. This is somebody who without, you know, judgment, without, you know, them, the patient having to feel like they’re burdening anybody. This is a person who’s saying, tell me all the things. Tell me everything that happens during the day. Tell me all of your struggles, all of your pain, all of you know the good things and the bad things and so on. And it’s, it is just a therapeutic experience in some cases where they feel like they can maybe share things that they’ve not shared with family members because they don’t want to worry them. And so I think it’s, you know, it serves two purposes. It, it, their insights do improve products and improve services. And that’s for sure. But to the individual, I think it provides a higher value. It’s that internal feeling that you are you are valued and that you are being heard. And I think that’s really important.
Donna J. Jodhan, LLB, ACSP, MBA: You know, I’ve had a lot of these feelings throughout my own life and I can certainly resonate with what you’re saying. You know, like you feel extremely lonely when you don’t want to burden your family members with, with certain, you know, feelings or, you know, and you’re afraid to tell them because you don’t want to overstay your welcome with, with their listening ear. They want to help you, but you are afraid to tell them. So it really does help if, if you know, like someone like myself, if I were able to talk to a researcher and say, hey, this is what I’m feeling, this is what has happened, whatever, whatever. So I certainly can resonate with what you’re saying, you know?
Pam Cusick: Yeah, I think it’s, it’s you wouldn’t be surprised, you know, because you just explained that to me. But I think that, you know, it is it is interesting to me when we are at an at an event and people are coming up for the first time and learning about what we are and what we do at rare. Patient voice and they’ll X I’ll explain. You know, how they can provide in, you know, their insights and, and their experience. And oftentimes they’ll say, well, why would anybody want to hear from me? You know, I’m not an expert. And I’ll say, but you but you are, you know, more about the challenges that you, you experience. And quite honestly, as you just said, you know, you, you don’t want to wear out the, the welcome or, you know, or burden your family member with that. So when you can do that through research, I think it is another, you know, it it’s, it’s helpful on so many levels.
Donna J. Jodhan, LLB, ACSP, MBA: Now rare patient voice recruits for a wide range of study types. Okay. Anything from television, anything from telephone interviews and focus groups to clinical trial matching and real world evidence studies for a patient or caregiver listening right now who might be interested in sharing their experience. Someone like me, can you explain how they would sign up and what they can expect from the process?
Pam Cusick: Of course. So the easiest thing to do if we don’t meet you at an event the easiest thing to do is to go to our website, which is rare patient.com. And there you’ll find several places where it says sign up here. And so there’s a little video that, that you can listen to that talks about the sign up process, but basically you go click that link and it will X you can add in the information. So your name, your address, your medical condition or conditions. Some basic information medical, if you take any, any particular medications and then click that you agree to participate in research and then or be participate, click the, I think it says that you agree to be invited to participate in research because we’re not just sending you to a study without your permission. So the next step is our team will go through and make sure all of the the information is, is correct. The, you know, medications are spelled right and so on. And, and that, you know, then it goes into a, basically like a database where when we have a study that is for the conditions that you have, have put in there, we will then you’ll get an email from our project management team inviting you to participate in that study. So in the invitation, there will be information such as the type of study, is it an interview or a focus group or a survey. How long is it? Is it in person or is it online? And then of course, you know what the compensation is for participating in that study.
Pam Cusick: And people that you don’t ever have to participate in a study, you might get an get an invitation and it maybe it’s for an interview and it’s on a day that just doesn’t work for you. Well, you don’t have to participate in that. But next time you’ll get an invitation and it might be for a two hour focus group, and it’s on a day that’s convenient and you can go ahead and participate. The, the project managers will connect you with if it’s a, if it is a, a focus group, an interview, whoever the researcher is who’s doing that work? If it’s a survey, the link will be sent to you, right? Right after you qualify for that study. And then once the research is completed, our team will then send over the compensation to you. So we compensate by we pay by check in the US where most of the world doesn’t use cheques. But we do that, you know, initially. And then we can also pay through direct deposit into a bank. And in, in Europe we pay by through like a gift card, a visa gift card or something like that. So there are a variety of ways to do that, but it’s a very simple sign up process where we’re only asking for a little bit of information. And then once there’s a study that that you are eligible for, you will get a link to another, the screener that will kind of qualify you for that research and then you can participate.
Donna J. Jodhan, LLB, ACSP, MBA: This is so fascinating.
Pam Cusick: I’m so glad.
Donna J. Jodhan, LLB, ACSP, MBA: No, I mean, I’ve always shied away from you know, trying to contact anyone to try and help me figure out what can be done for me, because I’ve been told that my my particular story is rare, but listening to you, I don’t know what to say. I’m just very, very fascinated by this. All that, you know, in most cases you have you know what I’m talking about here in Canada patients are not listened to most of the time or a lot of the time. And, you know, in my case, I am vision impaired. You go to a doctor, he says, well, you’re blind, you’re blind, you know, like there’s nothing to be done for you. And that’s the end of that. And I’m saying, oh my God, I’m here for a reason. On earth, there must be something that can be done. You know, like. Or at least let’s look into it.
Pam Cusick: Yeah. Right. Well, there, there might be different studies that are available there. They’re advocacy groups here in the, here in Baltimore. There’s a an advocacy group for the blind. There’s a Canadian Council of the blind and. Right. You know, I don’t know what kinds of, of support and services that they offer, but, you know, there are so many products and services being worked on all the time. You know, even if it is, maybe it’s not a cure, right? Maybe it’s, it’s a support it, maybe it’s a, an accommodation that, that you can help to improve. There are lots of ways that you can participate in research, usability research in particular for you know, for blindness is very, very important. You know, with, with screen readers, you know, being a tool that people use quite often, you know, they don’t always work with certain websites and so on. And so those, you know, being able to improve those tools is really important. And there’s always research going on. So there may well be a, you know, a place for you to share your voice and your experience and help to, you know, make things better for you and for other people who are blind.
Donna J. Jodhan, LLB, ACSP, MBA: Definitely. Rare patient voice was recently acquired by. Let me make sure I under. I pronounce this Konoval.
Pam Cusick: Yes.
Donna J. Jodhan, LLB, ACSP, MBA: Konoval a tech, a technology first health care intelligence company backed by Frazier Healthcare Partners. And this is a major milestone. What does that acquisition mean for the patient and the caregivers who are already part of the rare patient voice community. And how will it expand the company’s ability to amplify their voices?
Pam Cusick: It is very exciting. I think it’s, you know, we are we are very fortunate to be connected with this, with this novo because they offer kind of complementary services to what we offer. So we have a patient community. They have a health care provider community. They also have research tools and programming and data analytics that our clients can use. So what this means for our patients and caregivers is that there will be many more opportunities for them to participate in research and share their voices and be compensated for their time. So I think for, for our community. It’s a real win. Because we are able to expand what we can offer and be able to give them more opportunities to share their voice. So I’m very excited about that. I think for, you know, for many years, you know, we’ve had clients who have come to us looking to do often research is they’ll be part with, with healthcare providers and patients. And we could only provide that one part. So some of those projects we might have lost because a client might want to only go to one source to recruit both patients and healthcare providers. But now our patients will have the more opportunities because we can offer a lot more to our clients. And I’m super excited about that.
Donna J. Jodhan, LLB, ACSP, MBA: You sure sound excited. I’m sounding I am thinking excitement myself.
Pam Cusick: That’s good. I love that.
Donna J. Jodhan, LLB, ACSP, MBA: And as the clock starts to wind down, I want to ask you this question. As someone who is blind and who has spent my career fighting to remove barriers, I am always interested in understanding how different communities experience systemic obstacles. When rare disease patients participate in your studies and share their stories with their researchers. What kind of barriers do they most often describe, and how does their participation help break those barriers down?
Pam Cusick: So that’s that’s an interesting question.
Pam Cusick: There are sometimes we hear from patients about their, their experiences participating where they are, they have difficulty accessing the perhaps a survey online or perhaps a screening screening survey online. And so the what we have the opportunity to do then is to educate our partners and our clients about how they can make things more accessible for our patient community sometimes might be let’s say it’s a Zoom interview. And at some point, I think it was Zoom, one of those platforms didn’t have closed captioning. This was some some years ago. And and that was a real barrier for people who needed to, you know, who could maybe hear, hear well and needed to see the captions so they could answer the questions. So there, those types of barriers there. What I can say is, so from our end, we are not we’re not doing the research, we’re not creating the research tools. But when we hear from patients, we do like to go back to our clients and share with them what those barriers were so that in future studies, they can avoid those, those pitfalls. And I think that that’s an ongoing conversation in the research industry. How do we make accommodations for people so that everyone gets to participate? A great example is you know, there are, there are a lot of medical conditions that are just exhausting to, you know, just to, to answer ten questions. So tiring. Right? And, you know, and because you have to concentrate, I know from my son has hearing loss and processing and, and kind of hearing something and then having to process it and then spitting out an answer. It takes extra time. And so, you know, there are things that as a research industry, we can recommend, for example, you know, some surveys have what they call a time out. Like if it takes too long to answer something, they kick you out of the survey. Well, if we’re.
Pam Cusick: Working with.
Pam Cusick: Somebody who might need extra time, let’s not do that kind of a thing. Or if, if you want somebody with, you know, vision loss to complete a survey, let’s make sure that the screen reader works and things like that. So those are some barriers that we have heard about. The other thing that I would say is, you know, for people with, with certain medical conditions traveling to a site, so an on site, whether it’s a clinical trial or to a facility where they need to, you know, go to do an in-person interview, for example, could be incredibly difficult. Yes. You know, navigating from your home, you know, on public transportation or in a car or whatever it is, you know, to a particular space to then have to navigate into that space, spend time there and then come home is, is a little bit too much for people. And so what, what might happen is that you are excluding a part of your, your consumer or your, your patient population because you haven’t made the research accessible to them. So that’s another thing as an industry, we’re trying to work on, you know, balancing that, you know, yes, maybe you want to do some of that research in person, but can we offer people the opportunity to do it remotely, you know, if it suits them better, because we want to make sure that we are including all voices, not just the ones who can can get there. So hopefully I answered your question.
Donna J. Jodhan, LLB, ACSP, MBA: You did. And as the clock comes telling me that it’s coming up on time. I have any final thoughts from you before we go offline?
Pam Cusick: You know, I, I think I would say that everybody has the opportunity to share their voice. We might not always know how to do it, but it’s so valuable to participate in research. It’s so important to making products and services better. And I think the, the more we can spread the word that, you know, we want to hear from patients, we want to hear their lived experience, the better the world is going to be for the patients coming after them. So I would just encourage people to consider participating in research because it will not only help, again, develop better products and services, but also it will probably be a good thing for you sharing your experience. So that that’s my final book.
Donna J. Jodhan, LLB, ACSP, MBA: So for Aaron, who helps me with my podcast, we’re going to end the recording here because I’d like to talk to Pam about my own story, but I want to thank you for this interview, and we’ll end the recording here. And if you don’t mind. Oh, that’s my timer. You don’t mind? I’d like to share something with you.
Pam Cusick: Sure. Of course.
Donna J. Jodhan, LLB, ACSP, MBA: So, Pam, I was born eight hours after my twin brother, but my mom and dad did not know that another one was on its way. So when they were told that another one, another baby, was coming, they were taken aback. And finally, as soon as I was born, mom took one look at my at me and she said, something’s wrong with this child’s eyes. She is vision impaired or whatever, she said. And she was right. Now the thing is, and I’ll try to shorten this the story as much as I can. I was born with very little vision, and Mom and dad tried to get me the best opportunity to try and improve that vision. But it did not come until I was a teenager and I had my first cornea transplant. What is most unique about this transplant is that when I realized that I had obtained new vision, wonderful vision, vision that was beyond my belief, I entered into a world where I had difficulty containing myself because I was able to read and write without having seen before. I was able to identify a car, a bus, colors, colors most of all. But what will always resonate with me was one morning when my mom was putting the eye drops into my eye. I looked up and I saw her face and I realized, hey, wait a second, this is mom. And then there was dad standing next to her, and I looked at him and I said, wait a second here. I’m looking at faces.
Pam Cusick: Wow.
Donna J. Jodhan, LLB, ACSP, MBA: Right. And then I didn’t say anything to them, but I rushed to the washroom and looked in the mirror and I thought, oh shoot. I looked just like mom. Right. And I didn’t say a word. I started to cry to myself. They never knew anything about this. And this is how it continued. For several years, my whole world was turned into a different direction and. But then I lost it all in 2004 to a really bad retina detachment. But I’m sitting here saying, with all the research and all the development, there has been in in trying to restore sight to people and everything like that. Where can I go and who can I talk to with regard to any possibility of a product, a gadget, or something that I can use or could be implanted in into my brain so that I would have some restoration of vision? Is there anything that you can part with to tell me where can I go? What can I do? Who can I talk to?
Pam Cusick: Gosh. Oh, I can, I will try to find out for you off the top of my head, I’m just scrolling through this document that I have here that, that shows me whenever we’ve had a request for a blind study that focused on blindness, because it might, it might help me figure out a, a client who would be looking for this. A lot of our clients are not the actual research. Sorry, not the actual pharmaceutical company. Sometimes they are, but a lot of times they are. They are research companies doing work on behalf of those companies. But I’m sure I can find, you know, some, some information about how, who is working in this area. I would think that some of the I don’t know if you’re connected to that one group that I had mentioned in Canada, but there are other organizations. Hold on, let me go back up one. There are other organizations that at least here in the US that maybe you could tap into and, and find out from their websites. Have you, have you connected with the Canadian Council for the blind?
Donna J. Jodhan, LLB, ACSP, MBA: I am very familiar with them, but I don’t think that they would be able to help me because I think the research, the research person or whoever I’m looking for is someone who has been involved in site restoration or, you know, artificial. I don’t know how to put it, but any. And I know that research has been done into, you know, into site restoration, into implants that can help. I mean, I’ve, I’ve read about it in, in, you know, taking place in Japan or Europe and even in the States. Where can I go at least give myself one more chance? At least share the story. At least help others who probably are in a similar situation than to me.
Pam Cusick: Yeah. I mean, there has to be a somebody, somebody always working on something. So let’s see, I’m one technology company here. I have one more here. I can look at P three technology. Let me see this dot I oh. Break down barriers. So this is another another organization that, that works with people who have a variety of disabilities, but they have done some research on blindness. Let me do this. Let me do a little bit of, of research in our database to figure out, you know, if I can narrow it down to a company that might be working on something specifically related to what you’re talking about. So restoring vision or some sort of a tool or device or something like that. And I will email you back with that information.
Donna J. Jodhan, LLB, ACSP, MBA: Much appreciated. I’d be really grateful.
Pam Cusick: I would be happy to do that. Donna.
Pam Cusick: Okay.
Pam Cusick: I think it sounds to me so one thing I will say you are welcome if you are interested to join our patient community. And if, if you are interested, so, so one, you could do that as an individual and join our community and you know, participate in research, which is great. And I think, you know, that that would be a great opportunity for you. You can also work with us as a referral partner if you are interested in sharing, like so that other people join rare patient voice. But what I’m thinking of is we have that weekly warrior on that I was mentioning on our, the shared on Facebook and Instagram and maybe even TikTok. I don’t know about that one. But, but where you would have the opportunity to share your story, you know, where you, you grew up with limited sight, got your sight back, lost your sight again. Yeah. You know, to share with others and to hear your story, and that you’ve been successful, that you have a law degree and have, you know, worked on all of these cases. It’s people often feel very disenfranchised when they have a particular disability or, or medical condition and hearing that someone else has, you know, found a way to be successful is often very motivating. So you don’t have to say yes now, but it might say yes.
Donna J. Jodhan, LLB, ACSP, MBA: No. I think it’s important for people to remain motivated and positive. Like don’t think because of what has happened, there is no hope or oh my gosh, you know, I don’t know what to do. I would love, love, love to share my story.
Pam Cusick: So I think the I, I think you in order to do that, you either have to be a member of the rare patient voice community. I don’t think you have to be a referral partner, but I think you have to have signed up with us. I can ask our team, though, and figure out what what the process is, but I will. I think I have your email, don’t I directly in this email? Yeah, so I will. Is it the outlook one or the gmail one or the Sterling Creations one?
Donna J. Jodhan, LLB, ACSP, MBA: The sterling creations one.
Pam Cusick: Okay, so what I’m going to do is have one of my people from our patient advocacy team reach out to you and maybe they can help you. Because I just wish I knew the answer. I think it’s that you have to be in our patient community in order to be one of our weekly warriors. And all you would need to do with that is to sign up online.
Donna J. Jodhan, LLB, ACSP, MBA: Okay, terrific.
Pam Cusick: I will have someone contact you about that. So that’s our patient advocacy team. And then separately, I’m going to do a little bit of research on my own to see if I can find anyone doing that kind of research, and I will get back to you.
Donna J. Jodhan, LLB, ACSP, MBA: I appreciate it, and I am so excited about this particular podcast interview because I learned a lot. I learned a lot.
Pam Cusick: That’s fantastic.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, no, I’ve learned a lot and it’s a very different type of interview. So thank you very, very much for agreeing to be my guest. And I look forward to working with you in some way, shape or form.
Pam Cusick: That would be fantastic. Thank you so much, Donna. It was a great opportunity and I look forward to chatting with you again soon.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Thank you Pam, thank you very much.
Pam Cusick: Take care.
Donna J. Jodhan, LLB, ACSP, MBA: Bye bye. Take care now. Bye bye.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at DonnaJodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
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Remarkable World Commentary Episode #86: Interview with Pam Cusick, Senior Vice President, Driving Growth, Outreach & Patient Voice Integration, Rare Patient Voice
🎙️ Listen to this Podcast.
In this heartfelt episode of Remarkable World Commentary, Donna J. Jodhan sits down with Pam Cusick, Senior Vice President of Rare Patient Voice, to explore how patient-centered healthcare research is reshaping the relationship between people living with medical conditions and the companies developing treatments, products, and services for them. Pam traces her 30-year path in the field back to her first job working on FDA blood-donor screening research, then walks through how Rare Patient Voice has grown into a global community of more than 200,000 patients and caregivers spanning 1,500+ conditions across nine countries, compensating participants $120 per hour and paying out more than $8 million directly to patients and caregivers since the company was founded in 2013. She details the straightforward sign-up process, the deeply therapeutic value participants describe in finally being heard without judgment or fear of burdening loved ones, and what Rare Patient Voice’s recent acquisition by Konovo, a tech-first healthcare intelligence firm backed by Frazier Healthcare Partners, means for expanding those opportunities even further.
The conversation takes an especially personal turn when Donna shares her own story: born with very little vision, gaining remarkable sight through a cornea transplant as a teenager, and then losing it again in 2004 to a severe retinal detachment. She asks Pam, candidly, whether any current research into sight restoration or vision-related implants might offer her a place to share her voice and help others walking a similar path. Pam commits on the spot to searching her client database, connecting Donna with Rare Patient Voice’s patient advocacy team, and raising the possibility of featuring Donna as a “Weekly Warrior” on the company’s social channels. The episode closes as a living demonstration of the very principle Pam champions throughout the interview, that lived experience, when genuinely listened to, is where better products, better services, and more dignified care begin.
TRANSCRIPT
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Podcast Commentator: Greetings, Donna J. Jodhan, LLB, ACSP and MBA invites you to listen to her biweekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills and expertise in access, technology and information. As someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.
Donna J. Jodhan, LLB, ACSP, MBA: Hello everybody, and welcome to another episode of Remarkable World Commentary. I’m Donna J. Jodhan, a lifelong disability advocate and one who sees the world mainly through sound, touch and stubborn optimism. I am a law graduate and accessibility consultant, an author, lifelong barrier buster who also happens to be blind. You may know me from a few headline moments, as in November of 2010, I won the landmark charter case that forced the Canadian government to make its websites accessible to every Canadian. Not just to cited ones. And in July of 2019, I co-led the Accessible Canada Act with more than two dozen disability groups to turn equal access into federal law. And most recently, on June the 3rd, 2022, I was extremely humbled by Her Late Majesty’s Platinum Jubilee Award for tireless commitment to removing barriers. When I’m not in a courtroom or in a committee room or in a pottery studio, you’ll find me coaching kids with vision loss, producing audio mysteries, or helping tech companies to make their gadgets talk back in plain language. Everything I do circles one goal, and this goal is to turn accessibility from an afterthought into every day practice. I invite you to think of this show as our shared workbench, where policy meets lived experience and lived experience sparks fresh ideas. Now, before we jump into today’s conversation, let me shine a quick spotlight on today’s guest, a change maker whose work is every bit as remarkable as the world that we are trying to build. I am pleased and privileged to welcome Pam Cusick to the Remarkable World Commentary podcast. Welcome, Pam.
Pam Cusick: Thank you so much for having me, Donna.
Donna J. Jodhan, LLB, ACSP, MBA: It’s my pleasure. So, Pam, you have spent more than 30 years helping organizations to listen carefully, act responsibility, act responsibly, and inform decisions. Before we get into the details of what you do today, I would really love for our listeners to hear your story. What drew you to into health care research in the first place, and what has kept you passionate about it for three decades?
Pam Cusick: So I can go back to my first job. I worked for a social science research organization. And the, the project that I was first hired for was to, it was for the FDA and it was to improve screening for blood donors. And so I spent months and months in blood collection sites doing administering surveys and then doing the analysis. And what was really remarkable about that was we found that answering the way you asked the screening questions of people really made a difference in whether they answered honestly. So at the time, there were kind of indirect questions that were asked around risk factors for HIV and then more direct questions. And that’s what we were testing. And we found that there was a statistically significant difference where people would self-identify and ask for their blood not to be used for for transfusions because they felt they had a risk factor, but they didn’t want to say it, they didn’t want to say it during the interview. So that was just like a pivotal moment where I really saw the impact of what I was doing, really from end to end. And it it kind of kept up the whole time. You know, from, from then until now, I’ve worked on so many interesting projects around healthcare and disease areas on advertising for public health issues and things like that. And it, it really is it really makes you feel good when you feel, when you can see that you have made a difference and that the work you’re doing is changing lives. And so that’s what’s kept me with it.
Donna J. Jodhan, LLB, ACSP, MBA: Just a quick question offline. I once went to give or to donate blood and I was told that I couldn’t do that because I had a cornea transplant. And they said that because it’s a foreign body in within my system, I couldn’t give blood. Is this true?
Pam Cusick: I actually don’t know. I know that the different criteria are added at different times, so it may be if you have had a transplant you are not able to give. I know certain being exposed to certain conditions being in certain countries, there are all sorts of, of things that might seem arbitrary but are actually, you know, impact the safety of the blood supply. So it could be that somehow having had a, a cornea transplant impacts the, you know, I guess the, the potential for transfusions and someone else, I really don’t know that part of it.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, okay. Okay. You are the senior vice president, that rare patient voice. And this is a company that connects patients and caregivers with researchers who need their perspectives. For those listeners who may not be familiar with how healthcare market research works, can you walk us through what our patient voice actually does and why it matters so much to the patient community?
Pam Cusick: Of course. So we’re patient voice. We connect people with all kinds of opportunities to share their lived experience with different medical conditions. So there are pharmaceutical companies, medical device companies that are looking for patient insight about a product or service that they either are thinking of developing or something that they have already developed and they need input on, or maybe it’s already on the market and they’re looking for how to advertise it. It really spans the whole whole Lifespan of of drug development and device development where patient voices are needed. Now, if you go back to the really the 1990s there, that’s when the direct to consumer advertising was approved. So in a lot of countries, you can’t advertise directly to consumers with for blood, for blood, sorry for for different drugs. But here, of course we can. But it wasn’t allowed prior to that. And what the most common thing to do would be to, was to ask doctors what they thought patients thought. So instead of going to the source pharmaceutical companies and researchers would go to the doctor and say, well, do you think a patient would take this drug if it had these side effects? And the doctor would say, sure. Well, because, you know, if it if it cured this, then they would certainly do that.
Pam Cusick: But then you ask the patient, the patient would say something entirely different. So it, you know, came to a point where patients were, you know, no longer wanted to be in the background and they had the opportunity to share their voices. So we have built a community of over 200,000 patients and caregivers who we connect with, with these opportunities to be in a focus group or do an interview or complete a survey where they’re sharing about their experience or, or commenting on a medical device or a program that’s out there in the world and helping to make that better. And the reason it’s so important is that patients are the experts on their conditions. They live with those medical conditions day in, day out, 24 over seven, and they really know more about their life lived with that medical condition than anybody else. So asking a doctor is great. It only gives you part of the picture though. So here when we are, and when we allow patients to share their experience and share their voice. You create better products. You create better services that serve those people who actually need them.
Donna J. Jodhan, LLB, ACSP, MBA: So really, it’s all about teamwork between the researchers, the doctors, and the patients, right?
Pam Cusick: Absolutely. Yes, definitely.
Donna J. Jodhan, LLB, ACSP, MBA: And what is some or what are some of the most you know, what do patients come? What do patients find most important at the top of the list when it comes to research?
Pam Cusick: Well, you know, they the comments we get back from patients are often that they feel so valued and they feel like it’s almost therapeutic. They’ve been able to share this, you know, this lived experience with someone who really understands their condition and understands, you know, the, the, the treatment area. So when they talk about maybe the side effects or they talk about, you know, how their mobility issues, for example, they’re talking to someone who really has done some deep research and understands their condition and now is eliciting kind of more granular detail from those patients. And they really feel like they’re, they’re being heard and they feel like they’re valued for their time and their experience. Speaking of valuing them for their time and their experience, we also pay them for their time, which I did not mention. They earn $120 an hour for participating in this research. Which, you know, I think is a, you know, a nice amount for spending, spending an hour with someone, but more importantly, they really want to be able to make a difference. They want to help other people who might be diagnosed with that condition later on. Perhaps that person could skip a step and, and be you know, maybe avoid some pitfalls that they did a lot of in rare disease, especially people are often can take them ten years to be diagnosed and before that they’re diagnosed with 7 or 8 other things. So for patients who are, you know, living today with a particular condition, if they can help others to kind of not be misdiagnosed, that’s also very important to them.
Donna J. Jodhan, LLB, ACSP, MBA: You do much work with blindness related research.
Pam Cusick: We do have have projects that are related to blindness, vision loss, other glaucoma, things like that. So there, if there are people working on a product or a program for people with blindness, then we will likely get requests to connect people who are blind or who have vision loss with those projects.
Donna J. Jodhan, LLB, ACSP, MBA: At the end of this interview, I’d just like to mention my story and see whether, you know there is any possibility for some sort of teamwork with you, but let’s let’s move on.
Pam Cusick: Absolutely.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you. Rare Patient Voice has built a panel of more than 200 000 patients and caregivers caregivers across more than 1500 diseases in nine countries. That is an extraordinary number. How does your team go about finding and reaching patients, especially those living with rare conditions, who may feel invisible in the broader health care system.
Pam Cusick: So we meet the patients really where they are. And by that, I mean we go to a lot of patient events. So we might go to a National Hemophilia Foundation conference or a national sickle cell conference. And we exhibit there. We set up a booth and people can come and talk to us and we’ll explain what kinds of research they might be involved in. And if they’re interested, they can then sign up with us. Some of these events are more focused around rare disease. Some of them are more common conditions. But we try to go to a wide variety of, of events so that we can meet as many people as we can to, or, and invite them to join us. The other way that we meet people is through connecting with them through what we would call referral partners. A lot of organizations would call it an affiliate program, where those people are kind of like ambassadors for us. And they may have a community, a regional community of, of patients with the one particular condition, right? And they will can reach out to their community. And if people sign up to participate in research, we then donate money back to their organization to help to help defray their costs or support them. So some of those are individuals. Some of those are organizations. But it’s, it’s been a nice, a nice way to meet and connect with people. We now have over 6000 referral partners all around the world who help us to connect with patients and connect with family caregivers and bring them into our community. So we can offer them opportunities to participate in research.
Donna J. Jodhan, LLB, ACSP, MBA: Any affiliates with Canada?
Pam Cusick: We do. We have we actually have a community of patients in Canada. I, I would have to look up the number, but it, it could be somewhere around 20,000 or so patients and family caregivers in Canada right now.
Donna J. Jodhan, LLB, ACSP, MBA: Oh, terrific. One of the things I find so compelling about rare patient voices is that it was built on relationships rather than technology. One conference at a time, one walk at a time, one advocacy partnership at a time. And as someone who oversees everything from business development to patient advocacy to marketing, how do you maintain that personal community first approach as the company scales to a global leveller.
Pam Cusick: So I think, you know, the the key really is to, you know, go to these events to interact with the patients. You know, that’s the, the first thing we, we try to do and, and keep our, you know, our foot in the door. So we are actually talking to patients and not too far away from that. The other thing is we are constantly interacting with them through our patient advocacy team, through our our research team that, that connects them with we call it field operations. So they are the ones who are connecting them with the researchers. And they will be emailing with the, with the patients and with the caregivers and, and answering questions and sometimes getting on the phone with them. So I think staying available to people when they have questions, when they want, you know, they need support. Our patient advocacy team is very, very active on social media. So they interact with our community on Facebook and with threads and all these things. I don’t know about Instagram and tick tock, tick tock.
Donna J. Jodhan, LLB, ACSP, MBA: Tick tock, tick tock.
Pam Cusick: Yeah, exactly. All of these different platforms where they’re meeting the patients in our community and they’re, they’re highlighting, I think every other week, maybe it is, they’ll highlight a, or maybe it’s weekly, a weekly warrior and tell about that person’s story on our social media. So people, other people in the community can see that they’re not alone there. There are people like them out there in the world, and particularly in rare conditions, you know, it can be very isolating and lonely. So when you can connect with other people who you see, oh, they have the condition that I have, or they have a similar condition to what I have. I think it just makes you feel a little bit less lonely and, and I I think that also helps them to enjoy and really trust our, our community and our organization because we’re trying to connect deeply with them.
Donna J. Jodhan, LLB, ACSP, MBA: Boy, this resonates so much with me because when I talk to you after we finish online here I’ll tell you my little story.
Pam Cusick: So okay.
Donna J. Jodhan, LLB, ACSP, MBA: Thank you. So your company has paid more than $8 million directly to patients and caregivers since it was founded in 2013. That number sure tells a very powerful story on its own, but I would love to hear what that means from the human side. What do patients and caregivers tell you about what it feels like to be compensated for sharing their experiences. And what does that compensation represent? Beyond the dollar amount.
Pam Cusick: So I think I’ll answer the second part first. So beyond the dollar amount it represents that patients are being valued by the by industry. So by pharmaceutical companies, by agencies that are creating products and services for them, by medical device companies. They are valuing the patient and their insight that they have something important to bring to the table. So I think that’s the beyond the actual dollar amount. It’s really a, a bigger, a bigger thing that we are, we are now valuing these people who are the people that we are serving, right? You know, if you’re developing a product for somebody with a, in a particular treatment area, those are your your customers. But, you know, again, as I mentioned before, previously, no one was asking them about it. So I think it does represent this a, a shift to really valuing those people and their insights. You know, in terms of what they feel, you know, what the patients and caregivers tell us it’s, you know, feeling like they’re finally heard you know, the, the isolating part of having a medical condition which, you know, I hear often is that people, they don’t always want to keep telling their, their family members about their struggles, about their pain, about their challenges, because they feel like they’re burdening their family. And you know, and, and family members want to support their, the patients in their lives.
Pam Cusick: And that is, that is true. But I can understand why they, you know, sometimes they don’t want to continue to share, you know, the daily pain or the daily struggles with just getting out of bed. And so they keep it all inside. But then when they have the opportunity to share it with a researcher, it’s like the floodgates open. This is somebody who without, you know, judgment, without, you know, them, the patient having to feel like they’re burdening anybody. This is a person who’s saying, tell me all the things. Tell me everything that happens during the day. Tell me all of your struggles, all of your pain, all of you know the good things and the bad things and so on. And it’s, it is just a therapeutic experience in some cases where they feel like they can maybe share things that they’ve not shared with family members because they don’t want to worry them. And so I think it’s, you know, it serves two purposes. It, it, their insights do improve products and improve services. And that’s for sure. But to the individual, I think it provides a higher value. It’s that internal feeling that you are you are valued and that you are being heard. And I think that’s really important.
Donna J. Jodhan, LLB, ACSP, MBA: You know, I’ve had a lot of these feelings throughout my own life and I can certainly resonate with what you’re saying. You know, like you feel extremely lonely when you don’t want to burden your family members with, with certain, you know, feelings or, you know, and you’re afraid to tell them because you don’t want to overstay your welcome with, with their listening ear. They want to help you, but you are afraid to tell them. So it really does help if, if you know, like someone like myself, if I were able to talk to a researcher and say, hey, this is what I’m feeling, this is what has happened, whatever, whatever. So I certainly can resonate with what you’re saying, you know?
Pam Cusick: Yeah, I think it’s, it’s you wouldn’t be surprised, you know, because you just explained that to me. But I think that, you know, it is it is interesting to me when we are at an at an event and people are coming up for the first time and learning about what we are and what we do at rare. Patient voice and they’ll X I’ll explain. You know, how they can provide in, you know, their insights and, and their experience. And oftentimes they’ll say, well, why would anybody want to hear from me? You know, I’m not an expert. And I’ll say, but you but you are, you know, more about the challenges that you, you experience. And quite honestly, as you just said, you know, you, you don’t want to wear out the, the welcome or, you know, or burden your family member with that. So when you can do that through research, I think it is another, you know, it it’s, it’s helpful on so many levels.
Donna J. Jodhan, LLB, ACSP, MBA: Now rare patient voice recruits for a wide range of study types. Okay. Anything from television, anything from telephone interviews and focus groups to clinical trial matching and real world evidence studies for a patient or caregiver listening right now who might be interested in sharing their experience. Someone like me, can you explain how they would sign up and what they can expect from the process?
Pam Cusick: Of course. So the easiest thing to do if we don’t meet you at an event the easiest thing to do is to go to our website, which is rare patient.com. And there you’ll find several places where it says sign up here. And so there’s a little video that, that you can listen to that talks about the sign up process, but basically you go click that link and it will X you can add in the information. So your name, your address, your medical condition or conditions. Some basic information medical, if you take any, any particular medications and then click that you agree to participate in research and then or be participate, click the, I think it says that you agree to be invited to participate in research because we’re not just sending you to a study without your permission. So the next step is our team will go through and make sure all of the the information is, is correct. The, you know, medications are spelled right and so on. And, and that, you know, then it goes into a, basically like a database where when we have a study that is for the conditions that you have, have put in there, we will then you’ll get an email from our project management team inviting you to participate in that study. So in the invitation, there will be information such as the type of study, is it an interview or a focus group or a survey. How long is it? Is it in person or is it online? And then of course, you know what the compensation is for participating in that study.
Pam Cusick: And people that you don’t ever have to participate in a study, you might get an get an invitation and it maybe it’s for an interview and it’s on a day that just doesn’t work for you. Well, you don’t have to participate in that. But next time you’ll get an invitation and it might be for a two hour focus group, and it’s on a day that’s convenient and you can go ahead and participate. The, the project managers will connect you with if it’s a, if it is a, a focus group, an interview, whoever the researcher is who’s doing that work? If it’s a survey, the link will be sent to you, right? Right after you qualify for that study. And then once the research is completed, our team will then send over the compensation to you. So we compensate by we pay by check in the US where most of the world doesn’t use cheques. But we do that, you know, initially. And then we can also pay through direct deposit into a bank. And in, in Europe we pay by through like a gift card, a visa gift card or something like that. So there are a variety of ways to do that, but it’s a very simple sign up process where we’re only asking for a little bit of information. And then once there’s a study that that you are eligible for, you will get a link to another, the screener that will kind of qualify you for that research and then you can participate.
Donna J. Jodhan, LLB, ACSP, MBA: This is so fascinating.
Pam Cusick: I’m so glad.
Donna J. Jodhan, LLB, ACSP, MBA: No, I mean, I’ve always shied away from you know, trying to contact anyone to try and help me figure out what can be done for me, because I’ve been told that my my particular story is rare, but listening to you, I don’t know what to say. I’m just very, very fascinated by this. All that, you know, in most cases you have you know what I’m talking about here in Canada patients are not listened to most of the time or a lot of the time. And, you know, in my case, I am vision impaired. You go to a doctor, he says, well, you’re blind, you’re blind, you know, like there’s nothing to be done for you. And that’s the end of that. And I’m saying, oh my God, I’m here for a reason. On earth, there must be something that can be done. You know, like. Or at least let’s look into it.
Pam Cusick: Yeah. Right. Well, there, there might be different studies that are available there. They’re advocacy groups here in the, here in Baltimore. There’s a an advocacy group for the blind. There’s a Canadian Council of the blind and. Right. You know, I don’t know what kinds of, of support and services that they offer, but, you know, there are so many products and services being worked on all the time. You know, even if it is, maybe it’s not a cure, right? Maybe it’s, it’s a support it, maybe it’s a, an accommodation that, that you can help to improve. There are lots of ways that you can participate in research, usability research in particular for you know, for blindness is very, very important. You know, with, with screen readers, you know, being a tool that people use quite often, you know, they don’t always work with certain websites and so on. And so those, you know, being able to improve those tools is really important. And there’s always research going on. So there may well be a, you know, a place for you to share your voice and your experience and help to, you know, make things better for you and for other people who are blind.
Donna J. Jodhan, LLB, ACSP, MBA: Definitely. Rare patient voice was recently acquired by. Let me make sure I under. I pronounce this Konoval.
Pam Cusick: Yes.
Donna J. Jodhan, LLB, ACSP, MBA: Konoval a tech, a technology first health care intelligence company backed by Frazier Healthcare Partners. And this is a major milestone. What does that acquisition mean for the patient and the caregivers who are already part of the rare patient voice community. And how will it expand the company’s ability to amplify their voices?
Pam Cusick: It is very exciting. I think it’s, you know, we are we are very fortunate to be connected with this, with this novo because they offer kind of complementary services to what we offer. So we have a patient community. They have a health care provider community. They also have research tools and programming and data analytics that our clients can use. So what this means for our patients and caregivers is that there will be many more opportunities for them to participate in research and share their voices and be compensated for their time. So I think for, for our community. It’s a real win. Because we are able to expand what we can offer and be able to give them more opportunities to share their voice. So I’m very excited about that. I think for, you know, for many years, you know, we’ve had clients who have come to us looking to do often research is they’ll be part with, with healthcare providers and patients. And we could only provide that one part. So some of those projects we might have lost because a client might want to only go to one source to recruit both patients and healthcare providers. But now our patients will have the more opportunities because we can offer a lot more to our clients. And I’m super excited about that.
Donna J. Jodhan, LLB, ACSP, MBA: You sure sound excited. I’m sounding I am thinking excitement myself.
Pam Cusick: That’s good. I love that.
Donna J. Jodhan, LLB, ACSP, MBA: And as the clock starts to wind down, I want to ask you this question. As someone who is blind and who has spent my career fighting to remove barriers, I am always interested in understanding how different communities experience systemic obstacles. When rare disease patients participate in your studies and share their stories with their researchers. What kind of barriers do they most often describe, and how does their participation help break those barriers down?
Pam Cusick: So that’s that’s an interesting question.
Pam Cusick: There are sometimes we hear from patients about their, their experiences participating where they are, they have difficulty accessing the perhaps a survey online or perhaps a screening screening survey online. And so the what we have the opportunity to do then is to educate our partners and our clients about how they can make things more accessible for our patient community sometimes might be let’s say it’s a Zoom interview. And at some point, I think it was Zoom, one of those platforms didn’t have closed captioning. This was some some years ago. And and that was a real barrier for people who needed to, you know, who could maybe hear, hear well and needed to see the captions so they could answer the questions. So there, those types of barriers there. What I can say is, so from our end, we are not we’re not doing the research, we’re not creating the research tools. But when we hear from patients, we do like to go back to our clients and share with them what those barriers were so that in future studies, they can avoid those, those pitfalls. And I think that that’s an ongoing conversation in the research industry. How do we make accommodations for people so that everyone gets to participate? A great example is you know, there are, there are a lot of medical conditions that are just exhausting to, you know, just to, to answer ten questions. So tiring. Right? And, you know, and because you have to concentrate, I know from my son has hearing loss and processing and, and kind of hearing something and then having to process it and then spitting out an answer. It takes extra time. And so, you know, there are things that as a research industry, we can recommend, for example, you know, some surveys have what they call a time out. Like if it takes too long to answer something, they kick you out of the survey. Well, if we’re.
Pam Cusick: Working with.
Pam Cusick: Somebody who might need extra time, let’s not do that kind of a thing. Or if, if you want somebody with, you know, vision loss to complete a survey, let’s make sure that the screen reader works and things like that. So those are some barriers that we have heard about. The other thing that I would say is, you know, for people with, with certain medical conditions traveling to a site, so an on site, whether it’s a clinical trial or to a facility where they need to, you know, go to do an in-person interview, for example, could be incredibly difficult. Yes. You know, navigating from your home, you know, on public transportation or in a car or whatever it is, you know, to a particular space to then have to navigate into that space, spend time there and then come home is, is a little bit too much for people. And so what, what might happen is that you are excluding a part of your, your consumer or your, your patient population because you haven’t made the research accessible to them. So that’s another thing as an industry, we’re trying to work on, you know, balancing that, you know, yes, maybe you want to do some of that research in person, but can we offer people the opportunity to do it remotely, you know, if it suits them better, because we want to make sure that we are including all voices, not just the ones who can can get there. So hopefully I answered your question.
Donna J. Jodhan, LLB, ACSP, MBA: You did. And as the clock comes telling me that it’s coming up on time. I have any final thoughts from you before we go offline?
Pam Cusick: You know, I, I think I would say that everybody has the opportunity to share their voice. We might not always know how to do it, but it’s so valuable to participate in research. It’s so important to making products and services better. And I think the, the more we can spread the word that, you know, we want to hear from patients, we want to hear their lived experience, the better the world is going to be for the patients coming after them. So I would just encourage people to consider participating in research because it will not only help, again, develop better products and services, but also it will probably be a good thing for you sharing your experience. So that that’s my final book.
Donna J. Jodhan, LLB, ACSP, MBA: So for Aaron, who helps me with my podcast, we’re going to end the recording here because I’d like to talk to Pam about my own story, but I want to thank you for this interview, and we’ll end the recording here. And if you don’t mind. Oh, that’s my timer. You don’t mind? I’d like to share something with you.
Pam Cusick: Sure. Of course.
Donna J. Jodhan, LLB, ACSP, MBA: So, Pam, I was born eight hours after my twin brother, but my mom and dad did not know that another one was on its way. So when they were told that another one, another baby, was coming, they were taken aback. And finally, as soon as I was born, mom took one look at my at me and she said, something’s wrong with this child’s eyes. She is vision impaired or whatever, she said. And she was right. Now the thing is, and I’ll try to shorten this the story as much as I can. I was born with very little vision, and Mom and dad tried to get me the best opportunity to try and improve that vision. But it did not come until I was a teenager and I had my first cornea transplant. What is most unique about this transplant is that when I realized that I had obtained new vision, wonderful vision, vision that was beyond my belief, I entered into a world where I had difficulty containing myself because I was able to read and write without having seen before. I was able to identify a car, a bus, colors, colors most of all. But what will always resonate with me was one morning when my mom was putting the eye drops into my eye. I looked up and I saw her face and I realized, hey, wait a second, this is mom. And then there was dad standing next to her, and I looked at him and I said, wait a second here. I’m looking at faces.
Pam Cusick: Wow.
Donna J. Jodhan, LLB, ACSP, MBA: Right. And then I didn’t say anything to them, but I rushed to the washroom and looked in the mirror and I thought, oh shoot. I looked just like mom. Right. And I didn’t say a word. I started to cry to myself. They never knew anything about this. And this is how it continued. For several years, my whole world was turned into a different direction and. But then I lost it all in 2004 to a really bad retina detachment. But I’m sitting here saying, with all the research and all the development, there has been in in trying to restore sight to people and everything like that. Where can I go and who can I talk to with regard to any possibility of a product, a gadget, or something that I can use or could be implanted in into my brain so that I would have some restoration of vision? Is there anything that you can part with to tell me where can I go? What can I do? Who can I talk to?
Pam Cusick: Gosh. Oh, I can, I will try to find out for you off the top of my head, I’m just scrolling through this document that I have here that, that shows me whenever we’ve had a request for a blind study that focused on blindness, because it might, it might help me figure out a, a client who would be looking for this. A lot of our clients are not the actual research. Sorry, not the actual pharmaceutical company. Sometimes they are, but a lot of times they are. They are research companies doing work on behalf of those companies. But I’m sure I can find, you know, some, some information about how, who is working in this area. I would think that some of the I don’t know if you’re connected to that one group that I had mentioned in Canada, but there are other organizations. Hold on, let me go back up one. There are other organizations that at least here in the US that maybe you could tap into and, and find out from their websites. Have you, have you connected with the Canadian Council for the blind?
Donna J. Jodhan, LLB, ACSP, MBA: I am very familiar with them, but I don’t think that they would be able to help me because I think the research, the research person or whoever I’m looking for is someone who has been involved in site restoration or, you know, artificial. I don’t know how to put it, but any. And I know that research has been done into, you know, into site restoration, into implants that can help. I mean, I’ve, I’ve read about it in, in, you know, taking place in Japan or Europe and even in the States. Where can I go at least give myself one more chance? At least share the story. At least help others who probably are in a similar situation than to me.
Pam Cusick: Yeah. I mean, there has to be a somebody, somebody always working on something. So let’s see, I’m one technology company here. I have one more here. I can look at P three technology. Let me see this dot I oh. Break down barriers. So this is another another organization that, that works with people who have a variety of disabilities, but they have done some research on blindness. Let me do this. Let me do a little bit of, of research in our database to figure out, you know, if I can narrow it down to a company that might be working on something specifically related to what you’re talking about. So restoring vision or some sort of a tool or device or something like that. And I will email you back with that information.
Donna J. Jodhan, LLB, ACSP, MBA: Much appreciated. I’d be really grateful.
Pam Cusick: I would be happy to do that. Donna.
Pam Cusick: Okay.
Pam Cusick: I think it sounds to me so one thing I will say you are welcome if you are interested to join our patient community. And if, if you are interested, so, so one, you could do that as an individual and join our community and you know, participate in research, which is great. And I think, you know, that that would be a great opportunity for you. You can also work with us as a referral partner if you are interested in sharing, like so that other people join rare patient voice. But what I’m thinking of is we have that weekly warrior on that I was mentioning on our, the shared on Facebook and Instagram and maybe even TikTok. I don’t know about that one. But, but where you would have the opportunity to share your story, you know, where you, you grew up with limited sight, got your sight back, lost your sight again. Yeah. You know, to share with others and to hear your story, and that you’ve been successful, that you have a law degree and have, you know, worked on all of these cases. It’s people often feel very disenfranchised when they have a particular disability or, or medical condition and hearing that someone else has, you know, found a way to be successful is often very motivating. So you don’t have to say yes now, but it might say yes.
Donna J. Jodhan, LLB, ACSP, MBA: No. I think it’s important for people to remain motivated and positive. Like don’t think because of what has happened, there is no hope or oh my gosh, you know, I don’t know what to do. I would love, love, love to share my story.
Pam Cusick: So I think the I, I think you in order to do that, you either have to be a member of the rare patient voice community. I don’t think you have to be a referral partner, but I think you have to have signed up with us. I can ask our team, though, and figure out what what the process is, but I will. I think I have your email, don’t I directly in this email? Yeah, so I will. Is it the outlook one or the gmail one or the Sterling Creations one?
Donna J. Jodhan, LLB, ACSP, MBA: The sterling creations one.
Pam Cusick: Okay, so what I’m going to do is have one of my people from our patient advocacy team reach out to you and maybe they can help you. Because I just wish I knew the answer. I think it’s that you have to be in our patient community in order to be one of our weekly warriors. And all you would need to do with that is to sign up online.
Donna J. Jodhan, LLB, ACSP, MBA: Okay, terrific.
Pam Cusick: I will have someone contact you about that. So that’s our patient advocacy team. And then separately, I’m going to do a little bit of research on my own to see if I can find anyone doing that kind of research, and I will get back to you.
Donna J. Jodhan, LLB, ACSP, MBA: I appreciate it, and I am so excited about this particular podcast interview because I learned a lot. I learned a lot.
Pam Cusick: That’s fantastic.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, no, I’ve learned a lot and it’s a very different type of interview. So thank you very, very much for agreeing to be my guest. And I look forward to working with you in some way, shape or form.
Pam Cusick: That would be fantastic. Thank you so much, Donna. It was a great opportunity and I look forward to chatting with you again soon.
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Thank you Pam, thank you very much.
Pam Cusick: Take care.
Donna J. Jodhan, LLB, ACSP, MBA: Bye bye. Take care now. Bye bye.
Podcast Commentator: Donna wants to hear from you and invites you to write to her at DonnaJodhan@gmail.com. Until next time.
Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.
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