Latest / Podcasts By Donna Jodhan / Remarkable World Commentary Episode #86: Interview with Pam Cusick, Senior Vice President, Driving Growth, Outreach & Patient Voice Integration, Rare Patient Voice

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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 · Podcasts By Donna Jodhan

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Podcast Commentator: Greetings, Donna J. Jodhan, LLB, ACSP and MBA invites you to listen to
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her biweekly podcast, Remarkable World Commentary.
1:33
Here, Donna shares some of her innermost thoughts,
1:36
insights, perspectives, and more with her listeners.
1:40
Donna focuses on topics that directly affect the future of kids,
1:44
especially kids with disabilities.
1:47
Donna is a blind advocate, author, sight loss coach,
1:51
dinner mystery producer, writer, entrepreneur,
1:54
law graduate, and podcast commentator.
1:58
She has decades of lived experiences, knowledge,
2:02
skills and expertise in access, technology and information.
2:07
As someone who has been internationally recognized for her work and roles,
2:11
she just wants to make things better than possible.
2:15
Donna J. Jodhan, LLB, ACSP, MBA: Hello everybody, and welcome to another episode of Remarkable World Commentary.
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I'm Donna J. Jodhan, a lifelong disability advocate and one who sees the world mainly
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through sound, touch and stubborn optimism.
2:35
I am a law graduate and accessibility consultant,
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an author, lifelong barrier buster who also happens to be blind.
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You may know me from a few headline moments, as in November of 2010,
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I won the landmark charter case that forced the Canadian government to make its websites
2:58
accessible to every Canadian.
3:02
Not just to cited ones.
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And in July of 2019, I co-led the Accessible Canada Act with more than two dozen
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disability groups to turn equal access into federal law.
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And most recently, on June the 3rd, 2022, I was extremely humbled by Her Late
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Majesty's Platinum Jubilee Award for tireless commitment to removing barriers.
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When I'm not in a courtroom or in a committee room or in a pottery studio,
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you'll find me coaching kids with vision loss,
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producing audio mysteries, or helping tech companies to make their
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gadgets talk back in plain language.
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Everything I do circles one goal, and this goal is to turn accessibility from
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an afterthought into every day practice.
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I invite you to think of this show as our shared workbench,
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where policy meets lived experience and lived experience sparks fresh ideas.
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Now, before we jump into today's conversation,
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let me shine a quick spotlight on today's guest,
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a change maker whose work is every bit as remarkable as the world that we are trying to
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build. I am pleased and privileged to welcome Pam Cusick to the Remarkable World Commentary
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podcast. Welcome, Pam.
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Pam Cusick: Thank you so much for having me, Donna.
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Donna J. Jodhan, LLB, ACSP, MBA: It's my pleasure. So, Pam, you have spent more than 30 years
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helping organizations to listen carefully, act responsibility,
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act responsibly, and inform decisions.
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Before we get into the details of what you do today,
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I would really love for our listeners to hear your story.
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What drew you to into health care research in the first place,
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and what has kept you passionate about it for three decades?
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Pam Cusick: So I can go back to my first job.
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I worked for a social science research organization.
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And the, the project that I was first hired for was to,
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it was for the FDA and it was to improve screening for blood donors.
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And so I spent months and months in blood collection sites doing administering surveys
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and then doing the analysis.
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And what was really remarkable about that was we found that answering the way you asked the
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screening questions of people really made a difference in whether they answered honestly.
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So at the time, there were kind of indirect questions that were asked around risk factors
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for HIV and then more direct questions.
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And that's what we were testing.
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And we found that there was a statistically significant difference where people would
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self-identify and ask for their blood not to be used for for transfusions because they
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felt they had a risk factor, but they didn't want to say it,
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they didn't want to say it during the interview. So that was just like a pivotal
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moment where I really saw the impact of what I was doing,
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really from end to end.
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And it it kind of kept up the whole time.
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You know, from, from then until now, I've worked on so many interesting projects
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around healthcare and disease areas on advertising for public health issues and
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things like that. And it, it really is it really makes you feel good
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when you feel, when you can see that you have made a difference and that the work you're
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doing is changing lives.
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And so that's what's kept me with it.
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Donna J. Jodhan, LLB, ACSP, MBA: Just a quick question offline.
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I once went to give or to donate blood and I was told that I couldn't do that because I
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had a cornea transplant.
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And they said that because it's a foreign body in within my system,
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I couldn't give blood.
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Is this true?
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Pam Cusick: I actually don't know.
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I know that the different criteria are added at different times,
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so it may be if you have had a transplant you are not able to give.
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I know certain being exposed to certain conditions being in certain countries,
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there are all sorts of, of things that might seem arbitrary but are
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actually, you know, impact the safety of the blood supply.
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So it could be that somehow having had a, a cornea transplant impacts the,
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you know, I guess the, the potential for transfusions and someone
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else, I really don't know that part of it.
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Donna J. Jodhan, LLB, ACSP, MBA: Oh, okay. Okay. You are the senior vice president,
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that rare patient voice.
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And this is a company that connects patients and caregivers with researchers who need
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their perspectives. For those listeners who may not be familiar with how healthcare
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market research works, can you walk us through what our patient
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voice actually does and why it matters so much to the patient community?
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Pam Cusick: Of course. So we're patient voice.
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We connect people with all kinds of opportunities to share their lived experience
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with different medical conditions.
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So there are pharmaceutical companies, medical device companies that are looking for
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patient insight about a product or service that they either are thinking of developing
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or something that they have already developed and they need input on,
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or maybe it's already on the market and they're looking for how to advertise it.
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It really spans the whole whole Lifespan of of drug development and device development
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where patient voices are needed.
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Now, if you go back to the really the 1990s there,
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that's when the direct to consumer advertising was approved.
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So in a lot of countries, you can't advertise directly to consumers
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with for blood, for blood, sorry for for different drugs.
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But here, of course we can.
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But it wasn't allowed prior to that.
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And what the most common thing to do would be to,
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was to ask doctors what they thought patients thought.
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So instead of going to the source pharmaceutical companies and researchers
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would go to the doctor and say, well, do you think a patient would take this
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drug if it had these side effects?
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And the doctor would say, sure.
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Well, because, you know, if it if it cured this,
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then they would certainly do that.
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But then you ask the patient, the patient would say something entirely
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different. So it, you know, came to a point where patients were,
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you know, no longer wanted to be in the background and they had the opportunity to
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share their voices. So we have built a community of over 200,000 patients and
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caregivers who we connect with, with these opportunities to be in a focus
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group or do an interview or complete a survey where they're sharing about their experience
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or, or commenting on a medical device or a program that's out there in the world and
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helping to make that better.
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And the reason it's so important is that patients are the experts on their conditions.
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They live with those medical conditions day in,
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day out, 24 over seven, and they really know more about their life
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lived with that medical condition than anybody else.
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So asking a doctor is great.
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It only gives you part of the picture though.
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So here when we are, and when we allow patients to share their experience and share
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their voice. You create better products.
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You create better services that serve those people who actually need them.
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Donna J. Jodhan, LLB, ACSP, MBA: So really, it's all about teamwork between the researchers,
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the doctors, and the patients, right?
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Pam Cusick: Absolutely. Yes, definitely.
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Donna J. Jodhan, LLB, ACSP, MBA: And what is some or what are some of the most you know,
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what do patients come?
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What do patients find most important at the top of the list when it comes to research?
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Pam Cusick: Well, you know, they the comments we get back from patients are often that they feel so
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valued and they feel like it's almost therapeutic.
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They've been able to share this, you know, this lived experience with someone
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who really understands their condition and understands,
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you know, the, the, the treatment area.
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So when they talk about maybe the side effects or they talk about,
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you know, how their mobility issues, for example,
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they're talking to someone who really has done some deep research and understands their
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condition and now is eliciting kind of more granular detail from those patients.
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And they really feel like they're, they're being heard and they feel like
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they're valued for their time and their experience.
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Speaking of valuing them for their time and their experience, we also pay them for their
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time, which I did not mention.
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They earn $120 an hour for participating in this research.
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Which, you know, I think is a, you know, a nice amount for spending,
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spending an hour with someone, but more importantly,
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they really want to be able to make a difference.
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They want to help other people who might be diagnosed with that condition later on.
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Perhaps that person could skip a step and, and be you know,
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maybe avoid some pitfalls that they did a lot of in rare disease,
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especially people are often can take them ten years to be diagnosed and before that they're
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diagnosed with 7 or 8 other things.
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So for patients who are, you know, living today with a particular
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condition, if they can help others to kind of not be misdiagnosed,
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that's also very important to them.
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Donna J. Jodhan, LLB, ACSP, MBA: You do much work with blindness related research.
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Pam Cusick: We do have have projects that are related to blindness,
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vision loss, other glaucoma, things like that.
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So there, if there are people working on a product or a program for people with
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blindness, then we will likely get requests to connect people who are blind or who have
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vision loss with those projects.
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Donna J. Jodhan, LLB, ACSP, MBA: At the end of this interview, I'd just like to mention my story and see
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whether, you know there is any possibility for some sort of teamwork with you,
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but let's let's move on.
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Pam Cusick: Absolutely.
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Donna J. Jodhan, LLB, ACSP, MBA: Thank you. Rare Patient Voice has built a panel of more than 200 000 patients
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and caregivers caregivers across more than 1500 diseases in nine countries.
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That is an extraordinary number.
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How does your team go about finding and reaching patients,
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especially those living with rare conditions,
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who may feel invisible in the broader health care system.
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Pam Cusick: So we meet the patients really where they are.
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And by that, I mean we go to a lot of patient events.
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So we might go to a National Hemophilia Foundation conference or a national sickle
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cell conference. And we exhibit there.
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We set up a booth and people can come and talk to us and we'll explain what kinds of
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research they might be involved in.
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And if they're interested, they can then sign up with us.
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Some of these events are more focused around rare disease.
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Some of them are more common conditions.
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But we try to go to a wide variety of, of events so that we can meet as many people
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as we can to, or, and invite them to join us.
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The other way that we meet people is through connecting with them through what we would
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call referral partners.
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A lot of organizations would call it an affiliate program,
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where those people are kind of like ambassadors for us.
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And they may have a community, a regional community of,
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of patients with the one particular condition,
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right? And they will can reach out to their community.
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And if people sign up to participate in research,
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we then donate money back to their organization to help to help defray their
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costs or support them.
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So some of those are individuals.
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Some of those are organizations.
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But it's, it's been a nice, a nice way to meet and connect with people.
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We now have over 6000 referral partners all around the world who help us to connect with
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patients and connect with family caregivers and bring them into our community.
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So we can offer them opportunities to participate in research.
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Donna J. Jodhan, LLB, ACSP, MBA: Any affiliates with Canada?
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Pam Cusick: We do. We have we actually have a community of patients in Canada.
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I, I would have to look up the number, but it,
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it could be somewhere around 20,000 or so patients and family caregivers in Canada
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right now.
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Donna J. Jodhan, LLB, ACSP, MBA: Oh, terrific. One of the things I find so compelling about rare patient voices is that
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it was built on relationships rather than technology.
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One conference at a time, one walk at a time,
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one advocacy partnership at a time.
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And as someone who oversees everything from business development to patient advocacy to
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marketing, how do you maintain that personal community first approach as the company
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scales to a global leveller.
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Pam Cusick: So I think, you know, the the key really is to,
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you know, go to these events to interact with the patients.
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You know, that's the, the first thing we, we try to do and,
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and keep our, you know, our foot in the door.
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So we are actually talking to patients and not too far away from that.
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The other thing is we are constantly interacting with them through our patient
19:02
advocacy team, through our our research team that,
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that connects them with we call it field operations.
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So they are the ones who are connecting them with the researchers.
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And they will be emailing with the, with the patients and with the caregivers
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and, and answering questions and sometimes getting on the phone with them.
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So I think staying available to people when they have questions,
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when they want, you know, they need support.
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Our patient advocacy team is very, very active on social media.
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So they interact with our community on Facebook and with threads and all these
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things. I don't know about Instagram and tick tock,
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tick tock.
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Donna J. Jodhan, LLB, ACSP, MBA: Tick tock, tick tock.
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Pam Cusick: Yeah, exactly. All of these different platforms where they're meeting the patients
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in our community and they're, they're highlighting,
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I think every other week, maybe it is, they'll highlight a,
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or maybe it's weekly, a weekly warrior and tell about that person's
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story on our social media.
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So people, other people in the community can see that they're not alone there.
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There are people like them out there in the world, and particularly in rare conditions,
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you know, it can be very isolating and lonely.
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So when you can connect with other people who you see,
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oh, they have the condition that I have, or they have a similar condition to what I
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have. I think it just makes you feel a little bit less lonely and,
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and I I think that also helps them to enjoy and really trust our,
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our community and our organization because we're trying to connect deeply with them.
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Donna J. Jodhan, LLB, ACSP, MBA: Boy, this resonates so much with me because when I talk to you after we finish online
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here I'll tell you my little story.
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Pam Cusick: So okay.
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Donna J. Jodhan, LLB, ACSP, MBA: Thank you. So your company has paid more than $8 million directly to patients and
21:06
caregivers since it was founded in 2013.
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That number sure tells a very powerful story on its own,
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but I would love to hear what that means from the human side.
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What do patients and caregivers tell you about what it feels like to be compensated
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for sharing their experiences.
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And what does that compensation represent?
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Beyond the dollar amount.
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Pam Cusick: So I think I'll answer the second part first.
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So beyond the dollar amount it represents that patients are being valued by the by
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industry. So by pharmaceutical companies, by agencies that are creating products and
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services for them, by medical device companies.
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They are valuing the patient and their insight that they have something important to
22:08
bring to the table. So I think that's the beyond the actual dollar amount.
22:13
It's really a, a bigger, a bigger thing that we are,
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we are now valuing these people who are the people that we are serving,
22:22
right? You know, if you're developing a product for somebody with a,
22:26
in a particular treatment area, those are your your customers.
22:30
But, you know, again, as I mentioned before,
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previously, no one was asking them about it.
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So I think it does represent this a, a shift to really valuing those people and
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their insights. You know, in terms of what they feel,
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you know, what the patients and caregivers tell us it's,
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you know, feeling like they're finally heard you know,
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the, the isolating part of having a medical condition which,
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you know, I hear often is that people, they don't always want to keep telling their,
23:05
their family members about their struggles, about their pain,
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about their challenges, because they feel like they're burdening
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their family. And you know, and, and family members want to support
23:18
their, the patients in their lives.
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And that is, that is true.
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But I can understand why they, you know, sometimes they don't want to
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continue to share, you know, the daily pain or the daily struggles with
23:30
just getting out of bed.
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And so they keep it all inside.
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But then when they have the opportunity to share it with a researcher,
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it's like the floodgates open.
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This is somebody who without, you know, judgment,
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without, you know, them, the patient having to feel like they're
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burdening anybody. This is a person who's saying, tell me all the things.
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Tell me everything that happens during the day.
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Tell me all of your struggles, all of your pain,
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all of you know the good things and the bad things and so on.
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And it's, it is just a therapeutic experience in some cases where they feel like they can
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maybe share things that they've not shared with family members because they don't want
24:13
to worry them. And so I think it's, you know,
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it serves two purposes.
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It, it, their insights do improve products and improve services.
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And that's for sure. But to the individual, I think it provides a higher value.
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It's that internal feeling that you are you are valued and that you are being heard.
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And I think that's really important.
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Donna J. Jodhan, LLB, ACSP, MBA: You know, I've had a lot of these feelings throughout my own life and I can certainly
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resonate with what you're saying.
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You know, like you feel extremely lonely when you don't want to burden your family members
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with, with certain, you know, feelings or, you know,
24:56
and you're afraid to tell them because you don't want to overstay your welcome with,
25:01
with their listening ear.
25:03
They want to help you, but you are afraid to tell them.
25:06
So it really does help if, if you know, like someone like myself,
25:10
if I were able to talk to a researcher and say,
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hey, this is what I'm feeling, this is what has happened,
25:17
whatever, whatever. So I certainly can resonate with what you're saying,
25:21
you know?
25:22
Pam Cusick: Yeah, I think it's, it's you wouldn't be surprised,
25:26
you know, because you just explained that to me.
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But I think that, you know, it is it is interesting to me when we are at
25:34
an at an event and people are coming up for the first time and learning about what we are
25:39
and what we do at rare.
25:40
Patient voice and they'll X I'll explain.
25:43
You know, how they can provide in, you know,
25:45
their insights and, and their experience.
25:48
And oftentimes they'll say, well, why would anybody want to hear from me?
25:51
You know, I'm not an expert.
25:52
And I'll say, but you but you are, you know,
25:55
more about the challenges that you, you experience.
25:59
And quite honestly, as you just said, you know,
26:01
you, you don't want to wear out the, the welcome or,
26:04
you know, or burden your family member with that.
26:08
So when you can do that through research, I think it is another,
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you know, it it's, it's helpful on so many levels.
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Donna J. Jodhan, LLB, ACSP, MBA: Now rare patient voice recruits for a wide range of study types.
26:26
Okay. Anything from television, anything from telephone interviews and focus
26:32
groups to clinical trial matching and real world evidence studies for a patient or
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caregiver listening right now who might be interested in sharing their experience.
26:49
Someone like me, can you explain how they would sign up and what they can expect from
26:57
the process?
26:58
Pam Cusick: Of course. So the easiest thing to do if we don't meet you at an event the easiest thing
27:05
to do is to go to our website, which is rare patient.com.
27:10
And there you'll find several places where it says sign up here.
27:17
And so there's a little video that, that you can listen to that talks about the
27:22
sign up process, but basically you go click that link and it will X you can add in the
27:28
information. So your name, your address, your medical condition or
27:33
conditions. Some basic information medical, if you take any,
27:38
any particular medications and then click that you agree to participate in research and
27:47
then or be participate, click the, I think it says that you agree to
27:51
be invited to participate in research because we're not just sending you to a study without
27:56
your permission. So the next step is our team will go through and make sure all of the the
28:02
information is, is correct.
28:04
The, you know, medications are spelled right and so on.
28:07
And, and that, you know, then it goes into a,
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basically like a database where when we have a study that is for the conditions that you
28:17
have, have put in there, we will then you'll get an email from our
28:22
project management team inviting you to participate in that study.
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So in the invitation, there will be information such as the type of
28:32
study, is it an interview or a focus group or a survey.
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How long is it? Is it in person or is it online?
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And then of course, you know what the compensation is for participating in that
28:45
study. And people that you don't ever have to participate in a study,
28:50
you might get an get an invitation and it maybe it's for an interview and it's on a day
28:56
that just doesn't work for you.
28:57
Well, you don't have to participate in that.
29:00
But next time you'll get an invitation and it might be for a two hour focus group,
29:04
and it's on a day that's convenient and you can go ahead and participate.
29:09
The, the project managers will connect you with if it's a,
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if it is a, a focus group, an interview, whoever the researcher is who's
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doing that work? If it's a survey, the link will be sent to you,
29:24
right? Right after you qualify for that study.
29:27
And then once the research is completed, our team will then send over the compensation
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to you. So we compensate by we pay by check in the US where most of the world doesn't use
29:41
cheques. But we do that, you know, initially.
29:45
And then we can also pay through direct deposit into a bank.
29:50
And in, in Europe we pay by through like a gift card,
29:55
a visa gift card or something like that.
29:57
So there are a variety of ways to do that, but it's a very simple sign up process where
30:03
we're only asking for a little bit of information.
30:06
And then once there's a study that that you are eligible for,
30:11
you will get a link to another, the screener that will kind of qualify you
30:15
for that research and then you can participate.
30:19
Donna J. Jodhan, LLB, ACSP, MBA: This is so fascinating.
30:21
Pam Cusick: I'm so glad.
30:22
Donna J. Jodhan, LLB, ACSP, MBA: No, I mean, I've always shied away from you know,
30:27
trying to contact anyone to try and help me figure out what can be done for me,
30:32
because I've been told that my my particular story is rare,
30:38
but listening to you, I don't know what to say.
30:44
I'm just very, very fascinated by this.
30:46
All that, you know, in most cases you have you know what I'm talking about here in
30:54
Canada patients are not listened to most of the time or a lot of the time.
31:00
And, you know, in my case, I am vision impaired.
31:04
You go to a doctor, he says, well, you're blind,
31:06
you're blind, you know, like there's nothing to be done for you.
31:10
And that's the end of that.
31:11
And I'm saying, oh my God, I'm here for a reason.
31:14
On earth, there must be something that can be done.
31:18
You know, like. Or at least let's look into it.
31:21
Pam Cusick: Yeah. Right. Well, there, there might be different studies that are
31:25
available there. They're advocacy groups here in the,
31:30
here in Baltimore. There's a an advocacy group for the blind.
31:35
There's a Canadian Council of the blind and.
31:38
Right. You know, I don't know what kinds of, of support and services that they offer,
31:42
but, you know, there are so many products and services being worked on all the time.
31:49
You know, even if it is, maybe it's not a cure,
31:53
right? Maybe it's, it's a support it, maybe it's a,
31:58
an accommodation that, that you can help to improve.
32:01
There are lots of ways that you can participate in research,
32:05
usability research in particular for you know,
32:10
for blindness is very, very important.
32:13
You know, with, with screen readers, you know,
32:16
being a tool that people use quite often, you know,
32:18
they don't always work with certain websites and so on.
32:23
And so those, you know, being able to improve those tools is really
32:27
important. And there's always research going on.
32:30
So there may well be a, you know, a place for you to share your voice
32:34
and your experience and help to, you know, make things better for you and for
32:38
other people who are blind.
32:43
Donna J. Jodhan, LLB, ACSP, MBA: Definitely. Rare patient voice was recently acquired by.
32:50
Let me make sure I under.
32:51
I pronounce this Konoval.
32:54
Pam Cusick: Yes.
32:54
Donna J. Jodhan, LLB, ACSP, MBA: Konoval a tech, a technology first health care intelligence company backed by
33:03
Frazier Healthcare Partners.
33:06
And this is a major milestone.
33:10
What does that acquisition mean for the patient and the caregivers who are already
33:18
part of the rare patient voice community.
33:22
And how will it expand the company's ability to amplify their voices?
33:30
Pam Cusick: It is very exciting. I think it's, you know,
33:34
we are we are very fortunate to be connected with this,
33:39
with this novo because they offer kind of complementary services to what we offer.
33:46
So we have a patient community.
33:48
They have a health care provider community.
33:50
They also have research tools and programming and data analytics that our clients can use.
33:57
So what this means for our patients and caregivers is that there will be many more
34:03
opportunities for them to participate in research and share their voices and be
34:09
compensated for their time.
34:10
So I think for, for our community.
34:13
It's a real win. Because we are able to expand what we can offer and be able to give
34:20
them more opportunities to share their voice.
34:23
So I'm very excited about that.
34:25
I think for, you know, for many years, you know,
34:29
we've had clients who have come to us looking to do often research is they'll be part with,
34:35
with healthcare providers and patients.
34:39
And we could only provide that one part.
34:41
So some of those projects we might have lost because a client might want to only go to one
34:49
source to recruit both patients and healthcare providers.
34:52
But now our patients will have the more opportunities because we can offer a lot more
34:59
to our clients. And I'm super excited about that.
35:02
Donna J. Jodhan, LLB, ACSP, MBA: You sure sound excited.
35:04
I'm sounding I am thinking excitement myself.
35:08
Pam Cusick: That's good. I love that.
35:10
Donna J. Jodhan, LLB, ACSP, MBA: And as the clock starts to wind down, I want to ask you this question.
35:15
As someone who is blind and who has spent my career fighting to remove barriers,
35:23
I am always interested in understanding how different communities experience systemic
35:31
obstacles. When rare disease patients participate in your studies and share their
35:40
stories with their researchers.
35:43
What kind of barriers do they most often describe,
35:48
and how does their participation help break those barriers down?
35:56
Pam Cusick: So that's that's an interesting question.
35:58
There are sometimes we hear from patients about their,
36:03
their experiences participating where they are,
36:08
they have difficulty accessing the perhaps a survey online or perhaps a screening
36:17
screening survey online.
36:19
And so the what we have the opportunity to do then is to educate our partners and our
36:28
clients about how they can make things more accessible for our patient community
36:34
sometimes might be let's say it's a Zoom interview.
36:39
And at some point, I think it was Zoom, one of those platforms didn't have closed
36:47
captioning. This was some some years ago.
36:50
And and that was a real barrier for people who needed to,
36:56
you know, who could maybe hear, hear well and needed to see the captions so
37:02
they could answer the questions.
37:03
So there, those types of barriers there.
37:06
What I can say is, so from our end, we are not we're not doing the research,
37:11
we're not creating the research tools.
37:13
But when we hear from patients, we do like to go back to our clients and
37:19
share with them what those barriers were so that in future studies,
37:25
they can avoid those, those pitfalls.
37:27
And I think that that's an ongoing conversation in the research industry.
37:32
How do we make accommodations for people so that everyone gets to participate?
37:39
A great example is you know, there are, there are a lot of medical
37:43
conditions that are just exhausting to, you know,
37:47
just to, to answer ten questions.
37:50
So tiring. Right? And, you know, and because you have to
37:54
concentrate, I know from my son has hearing loss and processing and,
38:00
and kind of hearing something and then having to process it and then spitting out an
38:04
answer. It takes extra time.
38:07
And so, you know, there are things that as a research industry,
38:11
we can recommend, for example, you know, some surveys have what they call a
38:16
time out. Like if it takes too long to answer something,
38:20
they kick you out of the survey.
38:22
Well, if we're. Working with.
38:24
Somebody who might need extra time, let's not do that kind of a thing.
38:28
Or if, if you want somebody with, you know, vision loss to complete a survey,
38:36
let's make sure that the screen reader works and things like that.
38:39
So those are some barriers that we have heard about.
38:43
The other thing that I would say is, you know,
38:46
for people with, with certain medical conditions traveling to a site,
38:52
so an on site, whether it's a clinical trial or to a facility where they need to,
38:58
you know, go to do an in-person interview, for example,
39:02
could be incredibly difficult.
39:04
Yes. You know, navigating from your home, you know,
39:09
on public transportation or in a car or whatever it is,
39:12
you know, to a particular space to then have to navigate into that space,
39:18
spend time there and then come home is, is a little bit too much for people.
39:24
And so what, what might happen is that you are excluding a part of your,
39:29
your consumer or your, your patient population because you haven't
39:33
made the research accessible to them.
39:36
So that's another thing as an industry, we're trying to work on,
39:40
you know, balancing that, you know, yes, maybe you want to do some of
39:43
that research in person, but can we offer people the opportunity to do
39:47
it remotely, you know, if it suits them better,
39:52
because we want to make sure that we are including all voices,
39:55
not just the ones who can can get there.
39:59
So hopefully I answered your question.
40:01
Donna J. Jodhan, LLB, ACSP, MBA: You did. And as the clock comes telling me that it's coming up on time.
40:07
I have any final thoughts from you before we go offline?
40:12
Pam Cusick: You know, I, I think I would say that everybody has the opportunity to share their
40:19
voice. We might not always know how to do it,
40:22
but it's so valuable to participate in research.
40:26
It's so important to making products and services better.
40:31
And I think the, the more we can spread the word that,
40:35
you know, we want to hear from patients, we want to hear their lived experience,
40:39
the better the world is going to be for the patients coming after them.
40:44
So I would just encourage people to consider participating in research because it will not
40:50
only help, again, develop better products and services,
40:54
but also it will probably be a good thing for you sharing your experience.
41:00
So that that's my final book.
41:04
Donna J. Jodhan, LLB, ACSP, MBA: So for Aaron, who helps me with my podcast, we're going to end the recording here because
41:10
I'd like to talk to Pam about my own story, but I want to thank you for this interview,
41:18
and we'll end the recording here.
41:21
And if you don't mind.
41:23
Oh, that's my timer. You don't mind?
41:25
I'd like to share something with you.
41:27
Pam Cusick: Sure. Of course.
41:28
Donna J. Jodhan, LLB, ACSP, MBA: So, Pam, I was born eight hours after my twin brother,
41:34
but my mom and dad did not know that another one was on its way.
41:38
So when they were told that another one, another baby,
41:41
was coming, they were taken aback.
41:45
And finally, as soon as I was born, mom took one look at my at me and she said,
41:51
something's wrong with this child's eyes.
41:53
She is vision impaired or whatever, she said.
41:57
And she was right. Now the thing is, and I'll try to shorten this the story as
42:01
much as I can. I was born with very little vision,
42:05
and Mom and dad tried to get me the best opportunity to try and improve that vision.
42:12
But it did not come until I was a teenager and I had my first cornea transplant.
42:17
What is most unique about this transplant is that when I realized that I had obtained new
42:26
vision, wonderful vision, vision that was beyond my belief,
42:32
I entered into a world where I had difficulty containing myself because I was able to read
42:41
and write without having seen before.
42:45
I was able to identify a car, a bus, colors,
42:50
colors most of all. But what will always resonate with me was one morning when my mom
42:57
was putting the eye drops into my eye.
43:00
I looked up and I saw her face and I realized,
43:05
hey, wait a second, this is mom.
43:07
And then there was dad standing next to her, and I looked at him and I said,
43:12
wait a second here. I'm looking at faces.
43:16
Pam Cusick: Wow.
43:17
Donna J. Jodhan, LLB, ACSP, MBA: Right. And then I didn't say anything to them,
43:21
but I rushed to the washroom and looked in the mirror and I thought,
43:24
oh shoot. I looked just like mom.
43:29
Right. And I didn't say a word.
43:31
I started to cry to myself.
43:33
They never knew anything about this.
43:36
And this is how it continued.
43:38
For several years, my whole world was turned into a different direction and.
43:44
But then I lost it all in 2004 to a really bad retina detachment.
43:51
But I'm sitting here saying, with all the research and all the
43:57
development, there has been in in trying to restore sight to people and everything like
44:03
that. Where can I go and who can I talk to with regard to any possibility of a product,
44:12
a gadget, or something that I can use or could be implanted in into my brain so that I
44:21
would have some restoration of vision?
44:25
Is there anything that you can part with to tell me where can I go?
44:33
What can I do? Who can I talk to?
44:35
Pam Cusick: Gosh. Oh, I can, I will try to find out for you off the top of my head,
44:40
I'm just scrolling through this document that I have here that,
44:44
that shows me whenever we've had a request for a blind study that focused on blindness,
44:51
because it might, it might help me figure out a,
44:54
a client who would be looking for this.
44:56
A lot of our clients are not the actual research.
45:00
Sorry, not the actual pharmaceutical company.
45:02
Sometimes they are, but a lot of times they are.
45:06
They are research companies doing work on behalf of those companies.
45:11
But I'm sure I can find, you know, some, some information about how,
45:17
who is working in this area.
45:20
I would think that some of the I don't know if you're connected to that one group that I
45:25
had mentioned in Canada, but there are other organizations.
45:32
Hold on, let me go back up one.
45:35
There are other organizations that at least here in the US that maybe you could tap into
45:41
and, and find out from their websites.
45:43
Have you, have you connected with the Canadian Council for the blind?
45:47
Donna J. Jodhan, LLB, ACSP, MBA: I am very familiar with them, but I don't think that they would be able to
45:51
help me because I think the research, the research person or whoever I'm looking
45:56
for is someone who has been involved in site restoration or,
46:04
you know, artificial. I don't know how to put it,
46:07
but any. And I know that research has been done into,
46:12
you know, into site restoration, into implants that can help.
46:17
I mean, I've, I've read about it in, in, you know,
46:20
taking place in Japan or Europe and even in the States.
46:24
Where can I go at least give myself one more chance?
46:27
At least share the story.
46:29
At least help others who probably are in a similar situation than to me.
46:37
Pam Cusick: Yeah. I mean, there has to be a somebody, somebody always working on something.
46:42
So let's see, I'm one technology company here.
46:50
I have one more here. I can look at P three technology.
46:55
Let me see this dot I oh.
47:01
Break down barriers. So this is another another organization that,
47:07
that works with people who have a variety of disabilities,
47:10
but they have done some research on blindness.
47:14
Let me do this. Let me do a little bit of, of research in our database to figure out,
47:20
you know, if I can narrow it down to a company that might be working on something
47:27
specifically related to what you're talking about.
47:30
So restoring vision or some sort of a tool or device or something like that.
47:37
And I will email you back with that information.
47:40
Donna J. Jodhan, LLB, ACSP, MBA: Much appreciated. I'd be really grateful.
47:43
Pam Cusick: I would be happy to do that.
47:45
Donna. Okay. I think it sounds to me so one thing I will say you are welcome if you are
47:52
interested to join our patient community.
47:57
And if, if you are interested, so, so one, you could do that as an
48:03
individual and join our community and you know,
48:06
participate in research, which is great.
48:08
And I think, you know, that that would be a great opportunity for
48:10
you. You can also work with us as a referral partner if you are interested in sharing,
48:19
like so that other people join rare patient voice.
48:21
But what I'm thinking of is we have that weekly warrior on that I was mentioning on
48:31
our, the shared on Facebook and Instagram and maybe even TikTok.
48:35
I don't know about that one. But, but where you would have the opportunity to
48:40
share your story, you know, where you, you grew up with limited sight,
48:47
got your sight back, lost your sight again.
48:49
Yeah. You know, to share with others and to hear your story,
48:54
and that you've been successful, that you have a law degree and have,
48:59
you know, worked on all of these cases.
49:01
It's people often feel very disenfranchised when they have a particular disability or,
49:09
or medical condition and hearing that someone else has,
49:16
you know, found a way to be successful is often very motivating.
49:19
So you don't have to say yes now, but it might say yes.
49:25
Donna J. Jodhan, LLB, ACSP, MBA: No. I think it's important for people to remain motivated and positive.
49:31
Like don't think because of what has happened,
49:34
there is no hope or oh my gosh, you know, I don't know what to do.
49:37
I would love, love, love to share my story.
49:41
Pam Cusick: So I think the I, I think you in order to do that,
49:47
you either have to be a member of the rare patient voice community.
49:50
I don't think you have to be a referral partner,
49:52
but I think you have to have signed up with us.
49:54
I can ask our team, though, and figure out what what the process is,
49:58
but I will. I think I have your email, don't I directly in this email?
50:03
Yeah, so I will. Is it the outlook one or the gmail one or the Sterling Creations one?
50:09
Donna J. Jodhan, LLB, ACSP, MBA: The sterling creations one.
50:11
Pam Cusick: Okay, so what I'm going to do is have one of my people from our patient advocacy team
50:18
reach out to you and maybe they can help you.
50:24
Because I just wish I knew the answer.
50:25
I think it's that you have to be in our patient community in order to be one of our
50:30
weekly warriors. And all you would need to do with that is to sign up online.
50:36
Donna J. Jodhan, LLB, ACSP, MBA: Okay, terrific.
50:38
Pam Cusick: I will have someone contact you about that.
50:42
So that's our patient advocacy team.
50:44
And then separately, I'm going to do a little bit of research on my own to see if I can
50:49
find anyone doing that kind of research, and I will get back to you.
50:53
Donna J. Jodhan, LLB, ACSP, MBA: I appreciate it, and I am so excited about this particular podcast interview because I
51:00
learned a lot. I learned a lot.
51:03
Pam Cusick: That's fantastic.
51:04
Donna J. Jodhan, LLB, ACSP, MBA: Yeah, no, I've learned a lot and it's a very different type of interview.
51:09
So thank you very, very much for agreeing to be my guest.
51:14
And I look forward to working with you in some way,
51:17
shape or form.
51:18
Pam Cusick: That would be fantastic.
51:19
Thank you so much, Donna.
51:21
It was a great opportunity and I look forward to chatting with you again soon.
51:24
Donna J. Jodhan, LLB, ACSP, MBA: Yeah. Thank you Pam, thank you very much.
51:27
Pam Cusick: Take care.
51:27
Donna J. Jodhan, LLB, ACSP, MBA: Bye bye. Take care now. Bye bye.
51:32
Podcast Commentator: Donna wants to hear from you and invites you to write to her at DonnaJodhan@gmail.com.
51:38
Until next time.