Speaker 1: Welcome to Pharma Talk Radio. This podcast is focused on
Speaker 1: how to better partner with patient organizations from the twenty
Speaker 1: twenty five Chief Medical Officer Summer three sixty. For more
Speaker 1: information on the CMO Summit, editorials, podcasts, or webcasts, please
Speaker 1: visit CMO three sixty dot org. Thank you and enjoy
Speaker 1: the podcast.
Speaker 2: So I'm Joseph Palumbo, and yeah, I want to introduce
Speaker 2: these folks who are sitting next to me. They aren't
Speaker 2: quite remarkable individuals. In getting ready for this discussion, hearing
Speaker 2: their stories and their perspectives has really been quite fascinating,
Speaker 2: and I would like for them to share that with you,
Speaker 2: And assuming we have some time, we'll talk a little
Speaker 2: bit about my experience as well. But I think theirs
Speaker 2: is really wonderful. So let me allow them please to
Speaker 2: introduce themselves in the order my left to right, and
Speaker 2: then after the introduction, we'll decide who goes first.
Speaker 3: Sure to go offhabetical I hope. I'm Marie Abramson. I'm
Speaker 3: head of Clinical development and medical Affairs at Precision Biosciences.
Speaker 4: I'm Laura Williams. I'm the Chief Medical Officer at our
Speaker 4: Daleks Small Biotech just outside Boston.
Speaker 5: And I'm Peter Schmidt, I'm the president chief Scientific officer
Speaker 5: from BROW.
Speaker 2: And Joseph PULLMBO at BIOV. So who's going first?
Speaker 4: That's your call?
Speaker 2: All right, I'm gonna go Laura first.
Speaker 4: Great, So where where do you want me to start?
Speaker 2: So talk to us? Why does this make sense? Why
Speaker 2: do we want to talk Well that's first of all,
Speaker 2: that's the wrong title. But why do we want to
Speaker 2: talk to patients and advocacy when we start a study,
Speaker 2: or even before we start a study? What makes that
Speaker 2: important and useful?
Speaker 4: Yeah? I think at the forefront really of everything we
Speaker 4: do is the patient, right, and so you know when
Speaker 4: I think about the value of the patient's voice, that
Speaker 4: sort of reigned supreme in terms of all of the
Speaker 4: things that we do. And so for me, not only
Speaker 4: partnering with patients, but with organizations advocacy groups that connect
Speaker 4: you to those patients is absolutely critical. It's interesting. In
Speaker 4: my last drug that we were able to get approved,
Speaker 4: it was for patients on maintenance dialysis to treat their hyperfocetemia,
Speaker 4: and it was quite a challenge, you know, we went
Speaker 4: through a couple of appeals processes. Crl ad come got it.
Speaker 4: Approved and I thought that was just great, right, good
Speaker 4: votes all of that, But what really was important was
Speaker 4: actually trying to make sure patients access to the drug.
Speaker 4: And you don't really get a chance to do that
Speaker 4: if you haven't done the right partnering with patients as
Speaker 4: well as advocacy groups. And so for me, I think
Speaker 4: that was an excellent learning. It's not just getting a
Speaker 4: drug approved, but it's also making sure that the folks
Speaker 4: that you did all.
Speaker 2: That work for actually have access to the drug. How
Speaker 2: did you engage them?
Speaker 4: Yeah, So, I mean I think first and foremost, you
Speaker 4: have to identify the groups that you're most interested in.
Speaker 4: You have to ask the question, how can I help?
Speaker 4: In other words, you know, what are the things that
Speaker 4: are most important to you, your patients, the patient advocacy groups,
Speaker 4: and then what are the things that would be helpful
Speaker 4: to us because it's a shared relationship, right, And once
Speaker 4: you identify those things, you have to bring in and
Speaker 4: actually be real about. You know your intent about, you
Speaker 4: know what it is you want want to gain. It's
Speaker 4: not just a one off where again you need this
Speaker 4: this from them, and so it's transactional. No, this is
Speaker 4: a real relationship. It you start building it early on,
Speaker 4: and you utilize it throughout every aspect of your drug
Speaker 4: development piece as well as commercialization.
Speaker 2: So there's really that invitation to participate.
Speaker 4: Absolutely.
Speaker 2: Did you put together a patient advisory Absolutely?
Speaker 4: I mean for both both our indications. One is an
Speaker 4: IBS C, the other one is, as I just said,
Speaker 4: in patients on dialysis. We have really strong patient advisory councils.
Speaker 4: And it was really obvious to me, and I think
Speaker 4: I shared this a couple of years ago when I
Speaker 4: was a year how important the patient voice was when
Speaker 4: we had the open public forum and one by one
Speaker 4: every patient you know, sort of came up in that
Speaker 4: our session and basically spoke to the unmet need. And
Speaker 4: so just looking at the clinical efficacy, the safety, obviously
Speaker 4: all of those things are extremely important, but hearing why
Speaker 4: this matters to patients, I think stole the day and I.
Speaker 2: Think that has to be very rewarding as a physician.
Speaker 2: Absolutely cool, We'll come back, Murray please. You have a
Speaker 2: wonderful story.
Speaker 3: Yeah, you know, my perspective covers kind of multiple areas
Speaker 3: of my own experience, having been fortunate enough to do
Speaker 3: a fair bit of my clinical work, but subsequent to
Speaker 3: that in drug development, spending a substantial time at MSD,
Speaker 3: MERK and infectious diseases vaccines, among others, and then moving
Speaker 3: to biogen where there's always an un medical need and
Speaker 3: there's a lot of really needing patient populations that haven't
Speaker 3: been tapped before. And I think that for me, there
Speaker 3: are multiple reasons to think about how to partner with
Speaker 3: a patient organization. The practical there are the ones that
Speaker 3: I perhaps don't have to convince a physician why it's
Speaker 3: important to be patient connected. I think from a practical perspective,
Speaker 3: I would say that it falls into multiple categories. One
Speaker 3: is the premise that all patients are not the same.
Speaker 3: It's not a monolithic group, and I think for anyone
Speaker 3: this means that you have to get multiple opinions to
Speaker 3: understand whether the feasibility of your protocol makes sense and it's separationable.
Speaker 2: That's one that's to be doable.
Speaker 3: One two is because patients aren't a monolithic group, you
Speaker 3: have to make sure you're addressing a diverse population, bringing
Speaker 3: in depending on the phase of your study, the therapeutic area,
Speaker 3: that you're bringing in a wide variety of patients into
Speaker 3: your study. This may not be fashionable at this moment
Speaker 3: in time, but I have believed it for a long
Speaker 3: time and I still.
Speaker 2: Do better days are ahead.
Speaker 3: Yeah, So I think that there are multiple ways to
Speaker 3: do this. I think with the limitations of working in
Speaker 3: a drug company, you can. It's more difficult to do
Speaker 3: it individually, one on one, because you do run into
Speaker 3: the issues of one individual representing the entire patient. So
Speaker 3: I think patient organizations provide you an opportunity, and there's
Speaker 3: a diversity of patient organizations that can do this. There's
Speaker 3: some that are more advocacy based, there's some that are
Speaker 3: more scientific based, there's some that are more political based.
Speaker 3: And I'll give an example to a companies which you
Speaker 3: I may And so from my own experience working in
Speaker 3: medical research operations, the goal of course is to be
Speaker 3: able to enroll your study and have success at the
Speaker 3: end with label and so clearly the feasibility component is
Speaker 3: very important. Connecting with the right patient group is also
Speaker 3: very important. Building your credibility within the industry is also very.
Speaker 2: And there's that wording and that credibility right invitation and
Speaker 2: the credibility.
Speaker 3: And I have to say, based on my own professional
Speaker 3: and personal experience, based on health conditions within my family
Speaker 3: based on conditions that I've observed within my community. I
Speaker 3: think that it's particularly important to reach out to multiple
Speaker 3: patient organizations for this reason because what I've observed, For example,
Speaker 3: I'll share personally. I think I shared on the line, Yes,
Speaker 3: you know, my brother passed with ALS a few years ago,
Speaker 3: and I happen to be working at a company that's
Speaker 3: pioneering within the ALS space, and it was at this time,
Speaker 3: and what I recognized was several things. One, the people
Speaker 3: who are being diagnosed with the disease aren't well connected necessarily.
Speaker 3: There's a lot of disparity and disconnection within the medical
Speaker 3: community that prevents patients from getting access. That's correct, And
Speaker 3: so I think as a company, you have to be
Speaker 3: creative and thoughtful depending on your therapeutic area, depending on
Speaker 3: your disease, depending on the unmet medical need, depending on
Speaker 3: the moral urgency of the situation. In the case of ALS,
Speaker 3: reaching people earlier, reaching a diverse group, if you're looking
Speaker 3: for precision medicine and you're looking specifically for a particular genotype.
Speaker 2: All the more reasons you did successfully.
Speaker 3: And then when you talk about different patient groups, there
Speaker 3: are multiple different ways to do that, and I think
Speaker 3: different patients relate and connect to it in different ways.
Speaker 3: And again I think it requires a diversity of outreach
Speaker 3: to make that possible.
Speaker 2: Yeah. Absolutely, and congratulations on having done that the right way.
Speaker 3: I don't know if I did make it the right way,
Speaker 3: but by tried my best, I mean in the case
Speaker 3: of our trials, we were able to enroll them. I
Speaker 3: always feel like I've failed because ultimately we haven't solved
Speaker 3: the problem yet. Yeah, it's an iterative process, but I
Speaker 3: think for when you interact with the patient, at least
Speaker 3: for me, I derive energy from that and you realize
Speaker 3: it orients you to do the right thing and to
Speaker 3: think about a particular problem in a more well, should
Speaker 3: I say, a higher level of thinking than just operationally
Speaker 3: from point A to point B.
Speaker 2: Yeah. Absolutely, it goes both ways. It is energizing to
Speaker 2: be able to be a physician. So next to me
Speaker 2: is Peter Schmidt, who happens to be one of my
Speaker 2: good friends, and he came up here anyway. He has
Speaker 2: a very subtle sense of humor. And you guys can't
Speaker 2: see this, but he has mermaids on his tie and
Speaker 2: he told me he was going for a nautical theme,
Speaker 2: and so his braces have pirates, So thank you for that.
Speaker 2: So you've been working in a number of fields in
Speaker 2: neuroscience for quite a number of years, both as an academic,
Speaker 2: a leader in advocacy of course, and as a developer.
Speaker 2: So your perspective can, in some ways, I don't know,
Speaker 2: sort of go over the top of everything else we've
Speaker 2: been talking about here. You've seen it in a lot
Speaker 2: of different directions. So comments, what would you what would
Speaker 2: you like to tell us?
Speaker 5: So I spent about a decade working leading programs for
Speaker 5: Parkinson's Disease Advocacy Group, and one of the challenges that
Speaker 5: you all will face working with advocacy is that for
Speaker 5: the most of these organizations, their exposure to pharma is
Speaker 5: through the commercial division. Those are the people who often
Speaker 5: go out and first make contact, and they have a
Speaker 5: very different set of rules and a very different way
Speaker 5: of engaging. And I always tell I'm currently the chairman
Speaker 5: of the Davis Finney Foundation for Parkinson's, and I tell
Speaker 5: them there is no better engagement than a development stage company.
Speaker 5: It's hope, it's opportunity, it's a way that people The
Speaker 5: most valuable donation a patient can make is their participation
Speaker 5: in a clinical trial. Absolutely that is the number one value.
Speaker 5: But many of these advacy groups don't understand that, and
Speaker 5: so it's important to go out early and make contact.
Speaker 5: You don't have to go out with your checkbook, but
Speaker 5: just go out and have someone from your team or
Speaker 5: or someone from your office go out and make contact
Speaker 5: and talk to them about make sure they understand that
Speaker 5: you can that during your clinical development you cannot be
Speaker 5: promotional about your molecule. That you can't. They're afraid that
Speaker 5: they're going to be railroaded into something, but that's not lawful,
Speaker 5: and they don't understand that. So you need to help
Speaker 5: them to understand how clinical research represents the most, you know,
Speaker 5: the best possible way that an patient advoacy group can
Speaker 5: work with industry. And I truly believe that, and that
Speaker 5: I tell that to the groups that I advise. The
Speaker 5: other thing that you need to watch out for is that,
Speaker 5: like in any space, and the politics were discussed this morning,
Speaker 5: so I'm not discussing politics. There is a Dunning Krueger
Speaker 5: effect that you will see in patient advocacy, just as
Speaker 5: you see in so many domains. The people who come
Speaker 5: to you with the patients who come to you with
Speaker 5: the greatest confidence are the ones who are going to
Speaker 5: have preset ideas about which scientific avenues are going to
Speaker 5: be productive and which one they don't want to get
Speaker 5: engaged in the staff of Patient advocacy groups can help
Speaker 5: you get past that and find the people who hesitate.
Speaker 2: I used to be.
Speaker 5: On a panel for the Department of Defense funding Parkinson's research,
Speaker 5: and I got a friend of mine with a patient
Speaker 5: with Parkinson's. He got him appointed to be the patient representative,
Speaker 5: and every year he would say, I'm not smart enough.
Speaker 5: I don't think I should go back, and I would say, well,
Speaker 5: that's why you need to keep staying on this panel,
Speaker 5: and they kept him on that panel longer than any
Speaker 5: other participant because his insight and input was so valuable.
Speaker 5: He has finally said he can't do it anymore. It's
Speaker 5: not his diseases progress and he can't travel. But he,
Speaker 5: for I think ten years, was a productive represented the
Speaker 5: patient voice, and his value came from the fact that
Speaker 5: he knew that he was not the embodiment of Parkinson's.
Speaker 5: He represented a community and so working. It's great to
Speaker 5: engage with these groups and work with the staff to
Speaker 5: identify the people who are going to have an open mind,
Speaker 5: who are going to listen. One of the things that
Speaker 5: we've seen is that, you know, working in neurology, there
Speaker 5: are so many new approaches than there used to be.
Speaker 5: When I started working in Parkinson's disease, people thought there
Speaker 5: were only really two promising avenues, one of which was
Speaker 5: going to cure the disease stem cells and gene therapy
Speaker 5: dope minergic gene therapy, and those are not really major folks.
Speaker 5: I Now in clinical development, there are a ton of
Speaker 5: different molecular pathways that we're focusing on, and the Parkinson's
Speaker 5: community does not understand them, and so it's crucial that
Speaker 5: well doing outreach, that we bring scientific training. We teach
Speaker 5: people what are what's going to be productive, what's going
Speaker 5: to why we think that this avenue might be effective.
Speaker 5: And you can always get an independent SCIENTI as somebody
Speaker 5: who's not on your team, but at a university near
Speaker 5: where the headquarters is there always you can always find
Speaker 5: somebody who has the understanding and the independence to be
Speaker 5: able to talk about it honestly with that group. And
Speaker 5: that's what you'll need is just an honest discussion, Yes,
Speaker 5: this is something that's interesting, Yes it needs human trials
Speaker 5: for us to truly understand if this is the breakthrough
Speaker 5: that we hope it will be.
Speaker 2: And again that's honesty credibility one more time. So before
Speaker 2: I say anything, you've all had an opportunity to talk
Speaker 2: to each other. He would you ask each other any
Speaker 2: questions based on what you've just heard?
Speaker 3: Have lots of questions, you know, I guess from my
Speaker 3: vantage point. You know, patient organizations are as different as
Speaker 3: the patients themselves, and so I guess from a Parkinson's perspective,
Speaker 3: are there and you don't have to name specific ones,
Speaker 3: but what I've observed in the ALF space and I
Speaker 3: know that Parkinson's space a bit coming from biogen, are
Speaker 3: there organizations that are more focused on advocacy or patient
Speaker 3: engagement that probably men amend themselves more to pharmaceutical development, education,
Speaker 3: patient awareness feasibility than others.
Speaker 5: So I think in every domain, so that we used
Speaker 5: to say.
Speaker 2: What are they?
Speaker 3: Actually that was the real question is you know, could
Speaker 3: you share with me some of those thoughts?
Speaker 5: So in every it used to be that in every
Speaker 5: disease you had one organization that was focused on care
Speaker 5: and one organization that's focused on search. But they will
Speaker 5: probably both be good targets. It depends on them, how
Speaker 5: on the personalities the people you talk to, It depends
Speaker 5: on the on You can't know in advance whether or
Speaker 5: not an organization has funded something, and sometimes if you
Speaker 5: look at their websites, you can see they're really pushing
Speaker 5: one concept and that's not what I'm doing, and that's
Speaker 5: probably not the right group to reach out to. Sometimes
Speaker 5: they they are aligned, and they will be. Sometimes their
Speaker 5: research initiative aligns with your therapeutic approach, and then that's
Speaker 5: a great probably a great organization, unless they decide that
Speaker 5: there's the subtlety of the difference in what they're investing
Speaker 5: in is different. There are a lot of organizations who
Speaker 5: have taken a queue from the Cystic Fibrosis Foundation and
Speaker 5: think they're going to make billions by investing in a drug.
Speaker 5: And I don't know how firewall that is from programs
Speaker 5: at different places, but you may find that their challenge
Speaker 5: is there if they're invested in something.
Speaker 3: Yeah, yeah, I observed it. I observe that too. There's
Speaker 3: some that are profit motivated, some are, you know, and
Speaker 3: it also depends on the disease, how organized they are,
Speaker 3: at what stage they are. I've interacted with some spaces,
Speaker 3: let's say in mitochondrial disease, which is still very nascent
Speaker 3: because there's not adequate therapy in those spaces, And they're
Speaker 3: very different perspective of organization and structure than maybe in
Speaker 3: Alzheimer's or dementia program, which is vastly different in size,
Speaker 3: but also in focus and professional experience.
Speaker 5: Groups that engage parents of children with childhood diseases can
Speaker 5: are often really great to work with. They want any benefit,
Speaker 5: anything is, they're interested in anything. They don't just want
Speaker 5: Holy Grail cure. They want anything that can make their
Speaker 5: child better, and.
Speaker 2: Those good points to work. It's a really good point.
Speaker 4: Any Yeah, I mean I think it depends on the disease.
Speaker 4: I mean when I look at again and patients in
Speaker 4: the renal space, and we're talking about chronic kidney disease
Speaker 4: more specifically kidney failure. These are folks with chronic diseases.
Speaker 4: And when you think about some of the advocacy groups
Speaker 4: that come to my you know, National Kidney Foundation, American
Speaker 4: Kidney Fund, their focus is multi factorial, right, It's it's
Speaker 4: it's disease awareness. I mean, specifically with something like chronic
Speaker 4: kidney disease. We're up to ninety percent of folks don't
Speaker 4: even know they have it, right, and so disease awareness education,
Speaker 4: you know, championing you know, more transplants as opposed to
Speaker 4: maintenance dialysis, actually providing financial so to some of those
Speaker 4: patients who actually don't despite you know, you know, sort
Speaker 4: of our antiquated payment system for those patients they don't
Speaker 4: have enough to cover just you know, simple things. And
Speaker 4: so I think it depends on the disease. It depends
Speaker 4: on the organization. But they've been great to work with,
Speaker 4: at least in the renal space. When I look at
Speaker 4: the IBS space, not as many advocacy groups, but there
Speaker 4: needs to be more.
Speaker 2: So absolutely thank you for that. I want to leave
Speaker 2: about five minutes for question and answering, so I'll take
Speaker 2: a couple of minutes and sort of talk about my experience.
Speaker 2: I've been mostly working in the rare disease space, orphan
Speaker 2: disease since I came to Farmer from academia in the
Speaker 2: nineteen nineties. It's wonderful what the belong to a community.
Speaker 2: It's engaging in this way reminds us or reminds me
Speaker 2: of the fiduciary relationship we have as physicians. It's very
Speaker 2: easy in farm it's very easy in academia to put
Speaker 2: on your scientific hat, and sometimes informer to put on
Speaker 2: your commercial hat and think of, well, I'm doing this
Speaker 2: because X. But in speaking to families and speaking with
Speaker 2: advocacy and talking to patients and people who don't know
Speaker 2: their patients yet about what they want and what's meaningful,
Speaker 2: it educates you. It makes you a better physician, it
Speaker 2: makes you a better drug developer. It helps you to
Speaker 2: really hear the voice of the patient. There have been
Speaker 2: times where I brought things forward to global health authorities
Speaker 2: and not been sick successful and having the community there
Speaker 2: knowing that I had engaged with them and we were
Speaker 2: working together really helped to soothe a lot of that
Speaker 2: hurt when you know we didn't get to hear what
Speaker 2: we wanted to hear. I've taken that into my career
Speaker 2: and it's been one of the most fulfilling things to
Speaker 2: be able to reflect what the community wants. And I
Speaker 2: would say it's not just working with advocacy. I had
Speaker 2: the privilege of working in translational research in Japan for
Speaker 2: a number of years and one of the ways that
Speaker 2: we were able to advance molecules was to go into
Speaker 2: the laboratory and talk to the individual scientists about the
Speaker 2: cares they have in their families, the diseases, the conditions
Speaker 2: that are still unmet, because for many preclinical scientists, they
Speaker 2: read the literature, but they kind I do forget or
Speaker 2: unaware that they're there to produce medicines and to return
Speaker 2: it to them and say, Okay, here's an opportunity to
Speaker 2: do something for someone you care about. Are you interested
Speaker 2: in making that molel you are interested in developing that program.
Speaker 2: It's been really a privilege to work with these communities.
Speaker 2: So we have about five minutes left, and I'm hopeful
Speaker 2: that those of you who've worked in this field or
Speaker 2: or have thoughts will share those thoughts and experiences, because
Speaker 2: it's not just about bringing the advocacy group to the
Speaker 2: advisory panel. At the end of the day, it's about
Speaker 2: creating medicines. So any thoughts, Yeah, I had a question
Speaker 2: for you.
Speaker 6: So many of us here in small biotech companies, so
Speaker 6: we don't have a big organization. We don't have anybody
Speaker 6: in patient advocacy necessarily at our companies. And if you're
Speaker 6: going into a rare disease where maybe there isn't a
Speaker 6: well defined patient organization or advocacy group. Do you have
Speaker 6: any suggestions of how we get to the patients, how
Speaker 6: we get the voice of the patients.
Speaker 2: So let me first start by saying, we have about
Speaker 2: ten people in my company. Small company. It can be
Speaker 2: done with. Let me these folks provide you with some
Speaker 2: advice please.
Speaker 3: I was whispering, but I guess not in my microphone.
Speaker 3: I was just saying, at my current company, it's a
Speaker 3: very small company, right, it's a gene editing company, and
Speaker 3: they're working in various areas. One of the areas happens
Speaker 3: to be mitochondrial disease. And so that is an example
Speaker 3: that you're talking about. It's not well organized, but if
Speaker 3: you compare to big pharma and all of that, that
Speaker 3: actually I get the opportunity to dip into it and
Speaker 3: get to meet and interact, and it's a very rewarding
Speaker 3: thing because they actually don't come to you with preconceived
Speaker 3: ideas and they're very welcoming of all interactions that they have.
Speaker 3: The community itself is still relatively small, it's still very
Speaker 3: scientifically based, and they have these events where both patients,
Speaker 3: their families, the scientific community, the medical community all come together.
Speaker 3: And what I've observed is on the early side of
Speaker 3: a diseases, that's kind of where it starts. Then it
Speaker 3: gets really big where you wouldn't have that in a
Speaker 3: cardiovascular some cardiovascular conferences or some let's say, I don't know,
Speaker 3: let's make it expand it out to even Parkinson's. I
Speaker 3: would say it would be big enough in size that
Speaker 3: you might not have that same. So I think part
Speaker 3: of it is just reaching out and making sure you're interacting.
Speaker 3: If it's a global effort to do it globally, there's
Speaker 3: usually a couple major organizations in the US within this space,
Speaker 3: within Europe, within this space, within Asia, within this space,
Speaker 3: and just sit down and build a human relationship. And
Speaker 3: that seems to be a common theme that we've heard
Speaker 3: this afternoon, is building that connection.
Speaker 5: And the other place you might look is academic medical
Speaker 5: centers often have the day day events for their diseases.
Speaker 4: No, I mean, I don't have anything different there. I
Speaker 4: think again, it depends on the space. You were speaking
Speaker 4: in terms of rare diseases. I think in in in
Speaker 4: the case of you know, well known more populated chronic
Speaker 4: ny disease. There there are there are a lot of
Speaker 4: patients out there, but I think it's still important to
Speaker 4: be able to show them right who you are and
Speaker 4: that you're there for them, not for any other you know,
Speaker 4: sort of altruistic way. And so wherever it is, whether
Speaker 4: it's rare, whether it's uh, you know, more chronic disease states,
Speaker 4: I think building those relationships is just really key. I mean,
Speaker 4: we I love I mean of all the meetings that
Speaker 4: I have when we meet with our patients, when we
Speaker 4: have our patient council meetings, that's the best part of
Speaker 4: the day.
Speaker 2: It's very meaningful. I would suggest again, as you just heard,
Speaker 2: reach out to the academics in the field. I've worked
Speaker 2: a lot in childhood developmental disorders. Reach out to those physicians,
Speaker 2: and frankly, it's a wonderful way to get a sense
Speaker 2: of whether you're going to be welcome, right. If you
Speaker 2: can explain yourself well and they say cool, that will
Speaker 2: be part of the additional invitation. I'm trying to see
Speaker 2: a face yes please.
Speaker 7: Albert kim ra a Ventures. One of the things we've
Speaker 7: noticed about patient engagement and organizations, which by the way,
Speaker 7: is absolutely fundamentally important and critical new biotech sponsors is
Speaker 7: that in certain situations, the patient advacy a advocacy groups
Speaker 7: and organizations don't necessarily reflect some of the patient opinions.
Speaker 7: Could the panel comment on that topic when the advocacy
Speaker 7: groups aren't necessarily aligned with some of the patients they represent.
Speaker 7: And second, how do you all feel about compensating patients
Speaker 7: for their time in clinical trials, which is a polarizing issue.
Speaker 7: Let's say in oncology versus more common diseases.
Speaker 2: Who wants to shot at that?
Speaker 3: I can talk a little bit about the latter, and
Speaker 3: maybe you know, compensations are very complicated. You don't want
Speaker 3: to be in a position of inducement. The fact of
Speaker 3: the matter is clinical trials are biased ways of doing studies.
Speaker 3: People are more educated, more affluent, centrally located in certain
Speaker 3: geographic centers. Its gender, and its race. And I think
Speaker 3: one of the ways to be cognizant to bring in
Speaker 3: a more diverse population is to understand the hardships that
Speaker 3: patients have. And sometimes people have to leave work, people
Speaker 3: have to stay family members have to give up things,
Speaker 3: and it's economically not possible. And so for that reason,
Speaker 3: I think it depends on the therapeutic area and what
Speaker 3: you're talking about compensation, But it really is something you
Speaker 3: can focus on again of giving people the right amount
Speaker 3: of money to make up for the time lost to
Speaker 3: participate in a particularly important venture. But it's a balance
Speaker 3: of ethics and regulatory ability.
Speaker 2: Who would like the last one? When advocacy doesn't necessarily
Speaker 2: represent everyone.
Speaker 5: Harari and his book Sapiens says that groups form because
Speaker 5: they have a shared belief in something that's not true.
Speaker 5: And that's true of patient at groups as well as
Speaker 5: all other groups. So if you find a group whose
Speaker 5: identity is based on something that is not that is
Speaker 5: contradictory to what the hypothesis for your intervention, you probably
Speaker 5: need to find it another.
Speaker 2: Group or work them over on the long run. I
Speaker 2: at this point would say thank you to all, and
Speaker 2: also historically thank you to the AIDS community for really
Speaker 2: bringing this to the four or forty years ago, because
Speaker 2: before that experience, which I lived through, we didn't listen
Speaker 2: as much, and I think we now ask ourselves are
Speaker 2: we listening enough? And I hope we continue to listen.
Speaker 2: Thank you, thank you.
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