hello and welcome to this edition of joint action [Music] this podcast is dedicated to all those out there who have osteoarthritis on the show we unpack the truth and demystify the myths about the disease and its management if you have joint pain and want to know more about how to manage it from the world's best experts you've come to the right place without further ado it is time to welcome your host david hunter hello and welcome to this edition of the joint action podcast where we have the privilege and opportunity of talking about an osteoarthritis
moon shot now the prevalence of osteoarthritis is increasing rapidly and the latest estimates suggest that about 500 million people around the world are affected the consequent disability and socioeconomic impact is enormous and in that context of massive prevalence and disability we're faced with a disease where its most pressing presenting symptom pain remains largely an unmet need with that background in mind there are huge opportunities here for us all to advance now the dutch arthritis society has recently launched the moon shot specifically they state that in 2040 osteoarthritis will no longer be a chronic disease but
rather an acute disease now i recently had an opportunity to discuss this project with them and to look at research and development opportunities that are relevant to our international audience and i had the privilege of talking to some of the architects of that project today specifically joyce nabuzz recently joined the dutch arthritis foundation after co-developing the organization's strategy 2020 to 2040 as a researcher at the university in amsterdam she's trained as a doctor bioethicist and in the field of healthcare organization and she studied health from a variety of perspectives in her earlier work as a
researcher at university she investigated the societal implications of upcoming reproductive technologies ranging from ivf to artificial gametes and the artificial worm in her research she explored how these technological developments affect our ideas about child rearing and what it means to be a family and the relation with our bodies in her current role at the arthritis foundation she hopes to use this experience to identify and help realize promising opportunities that empower and support the health and well-being of people with arthritis cornea battenberg de jong is the deputy director and manager of operations and manager of fundraising
at the dutch arthritis foundation he's worked there for six and a half years at rumor netherlands and his responsibility includes research impact management and investments he studied at the university of utrecht business economics and separately social studies and in terms of the field of osteoarthritis he's interested in developing new opportunities creating network solutions and patient-centered development hello joyce and cornei and welcome to the show it's great to have you along thank you thank you to be here thank you very much absolutely our pleasure and i really appreciate the time that you've given to us today
now before we get into the topic of the day which is obviously talking about your moonshot project i just wonder if you both could just give us a little bit of a preview about what your background is and what your typical day is maybe joyce if you want to kick off yes so i have a background in medicine and then i move towards the field of innovation and organization healthcare and bioethics so quite a diverse background i would say i was working at the frey university in amsterdam actually when i was working on a project
for the dutch arthritis foundation to determine their strategy and then one day my christmas holiday i got a call from a disaster arthritis foundation asking whether i would like to join so i only recently started three weeks now so still trying to get to know everything and everyone so that's a bit more about my background and what a typical day looks like well at this moment still reading a lot talking to a lot of people really dive into the field of rheumatology basically and actually today is my free day so i think i'm just gonna
roam in the park or do something else fun oh that sounds brilliant corny yeah a little bit of my background i'm not from from the work field of hospitalization or biotech i'm a business economic a person from backgrounds worked formally as a ceo or a ceo in healthcare organizations or in education governmental organizations six years ago six and a half years ago they asked me to come into the dutch driving society for the more side of ict finance etc in the dutch trading society after a couple of years now i'm working as the vice president
of dutch at right society in the work field of research valorization and impact management and my normal typical day is looking like business development talking with researchers talking with insurance companies talking with let's say everybody my agenda is filled in from nine till six every day with a lot of talks with a lot of people so that's my normal day and from the private side today just married 23 years and uh three daughters in the age of 18 16 and 12 years old this is also that that fills a little bit of the evenings well
happy happy anniversary i hope you uh have a wonderful day yes thank you and so cournet has just given us a little insight into what his typical day might look like in terms of obviously having uh some interaction with the family joyce any interests outside of work yes thankfully so when i'm not working i really like science and and and that's why i do what i do but outside of my work i'm really into the arts and and design so i try to go to exhibitions or art house cinema is what i really like to
do and i love doing sports so i do a lot of kickboxing and since gowitz i am a runner actually and what i really enjoy is doing odd jobs in the house i think most people don't like doing it but i love fixing a lamp or electricity or anything anything that is broken we all need someone like that joyce in the house yeah i don't know what it is i just enjoy it yeah fantastic coordinate other than the family any interests outside that uh keep you amused but no sports at all i'm doing a lot
of uh work in the board of trustees from a couple of educational organizations and also in the sports clubs of my daughters i'm the board what i call the president now um in the interest of just interchanging between the two of you courtney if you had to describe yourself in five words what would they be in five words busy business development focused and happy that are the five words there's a three grenade because i think business development accounts for more than one um yeah that's three for my side perspective joyce what about yourself i would
say i'm curious optimistic open-minded and enthusiastic about the unknown brilliant yeah great great qualities now obviously the topic of the day we're talking about a project uh that you kindly invited me to give some insights on your your moonshot moonshot project but i guess just before we get into that and for these questions please feel free for either one of you to address them i wonder if in the first instance one of you could just tell me a little bit more about the dutch arthritis foundation yes let's start in 1927 david the dutch i tried
this society with another cult name they're striding from dramatic that's in dutch but that was that's how it's funded 1927 a doctor in amsterdam dr jan von brama decided that people with rheumatism diseases need more help than the normal situation so that's where we are funded so nowadays we are 94 years old organization the last what you can call 10 years we are a grant giver for research and that could be done by all private donations that were done in the last 94 years the last 10 years we are also a patient focused and patient
oriented organization so what they call we are also now a patient organization so we are a hybrid organization now working on goals and perspectives for patients with rheumatic diseases and also specific for patients and consumers with osteoarthritis so still grant giving based on the private donations but more and more also a business developer with money from governmental sites and also from investors and also the advocacy for patients and information for patients and consumers with or living with osteoarthritis and rheumatic diseases yeah sounds like tremendously important work and both from the perspective of being an information
provider an advocate for patients but also for um providing funds for much needed research that goes on now obviously the focus of today is about the moonshot project i wonder if you could just tell us a little bit about what that is and what the plan is so last year in may we were asked actually by them to do a strategy project there was a need for a new strategy a need for new moonshots the aims that they want to fulfill and they asked us in consult as researchers i was working at a as an
institute at the university focused on social sciences of science and technology meaning how can we involve a lot of different stakeholders in new develop developments not only researchers but also government and also people affected by policy meaning consumers or other kind of stakeholders so that's why we were asked actually to join this project and in order to formulate these new moonshots for the arthritis foundation we involved a lot of different stakeholders meaning consumers with away or other kind of rheumatic diseases healthcare providers researchers industry government and what we did is we had interviews focus groups
but also a large dialogue online dialogue already with over 90 healthcare providers and researchers to really deep dive into the needs and desires and dreams of those people working in the field to see where the doctor arthritis foundation could best focus on and what kind of mood shots would actually cover those needs and desires so after about three quarters of a year we've then came to three moonshots so maybe i can already highlight them or so the first and i would say most potentially the main goal is the first one so in 2040 osteoarthritis will
no longer be a chronic disease but an acute disease then the second moonshot is we realize precision medicine for people with osteoarthritis and precision medicine they should think about prevention prediction personalization of care and participation of consumers with oa and then the third moonshot is we are the platform for the most relevant information and societal awareness of the disease and well these are ambitious goals so we are now in the process of actually creating a roadmap so if these are our goals what are the steps we should take to get there so we're currently in
the process of back casting and asking ourselves the question if these are our aims what are the milestones that we will need to hit in order to realize our goals wonderful thanks joyce and i'm just wondering if i could just dig a little bit more into those three themes just to understand them a little bit better wonderfully ambitious project and hopefully you'll achieve most of the aims that you set out in your roadmap but i'm just wondering if you could just expand a little bit on more on what you mean by chronic disease and differentiate
that from acute disease in terms of wanting the chronic disease to disappear and it just becoming an acute disease i mean it's not a surprise but the most problematic art for those people with oa are the physical complaints that they experience every day and not only a week like when you break a leg but actually they have to accept that they will be a patient for the rest of their life at the moment of diagnosis and what we saw in other fields is that well for a lot of illnesses there is a cure so you
get a cure and you're not a patient anymore consumer and we would actually like to take that step with oa as well we want people not to have to live with the diagnosis for the rest of their life but can we make sure that it's a reversible illness can we make sure that at the moment of diagnosis it's only a diagnosis for maybe a couple of years and make sure that it's not a chronic disease that they have to live with every day and impact their life for the rest of their lives yeah that's the
right way you mentioned in the last sentence that people with away don't have to live it for their complete life every day that that's that's the reversible side of our project that there will be oa in 2050 for example yes that could be but our biggest goal is to achieve is that people don't have to live every day with their disease and have the the impact side of their disease and it's good to mention david that our two first focus points the the more chronic to reversible disease and also for the prediction side we see
that we have to work together internationally and that's not only based in the in the situation of the netherlands and the third focus point the platform side is morph based for a dutch situation okay and and in terms of making osteoarthritis and accused as opposed to a chronic disease and i'm not sure whether this is something you've already elaborated on or will do so as as part of the moon shot do you have any insights as to how you intend to make it an acute as opposed to a chronic disease we have done a lot
of interviews with also a lot of your international collegiate yourself david what we see is at first we need to know more about the disease at itself so do we know in 2030 2035 probably enough about the phenotyping endotyping etc of the disease how is it created in the lives of the people and that we develop also real drug solutions for these patients groups we all know we can work more and more together based on the endotypes and phenotypes to develop for some smaller groups available drugs that can give new opportunities and new chances to
to live it away and after creating the roadmap in june we would like to present them also to you and share them with the world sounds like a great initiative and obviously very happy to continue to contribute in whatever way shape or form i can we use the word we want to make a reversible so that's a word that we often use and in in order to make it reversible we are it's really important what you consider the cause of the disease and i think in addition to what cornell already said is that this roadmap
is really important to figure out what kind of different disciplines are involved in in this cause of the disease and indeed genetics how about lifestyle influences what about epigenetics you know we've also heard about the causes of pain and how that can be maybe a parallel path in the disease and not only a result of the disease but actually sustained after structural causes have been fixed so i think in answering your question david we are still in the process and and when we want to answer this it's really about thinking what kind of different causes
do we see and how do they interrelate and i think that's also a process that we start now but most definitely we'll find different answers to that questions in the upcoming years slash decades yeah i mean it's it's obviously a complex problem and it's a big goal that you're setting for yourself but one that's obviously lofty and that makes it really really appealing i think for both the community of researchers but also hopefully for consumers out there that that have osteoarthritis the second piece of the platform is around precision medicine i just wonder if again
to just expand a little bit more about what precision medicine means and what you mean by that term yeah i think it's a term that is not new and is not specific for the field of dermatology so i think it was already coined in the 90s so we use the term precision medicine with it's four ps we call it so the first one being prevention the second prediction the third personalization and participation and what i think in prevention we ask ourselves the question what is the first stage that we can intervene basically so what are
the different you can think about lifestyle interventions as we talked about a lot before david what can you already do with sports and and food for example but you could also think about genetics like can we already predict somebody will develop the disease so those are questions we ask ourselves in this domain then prediction is all about can you predict the extent to which somebody responds to a treatment rather than it being a a guess whether something will work or not will we be able to predict this will actually help for you more than we
do now and then the personalization part is really about moving from a one-size-fits-all method to a unique treatment that is actually accustomed or adjusted to your profile biological characteristics but also to your treatment goals as an individual and then the participation is really about shifting the consumer to a co-leader in treatment they are in charge of their treatment of the treatment goals rather than the doctor being in control and the patient or the consumer asked in consult we really want to shift that and make them the co-leader of their own treatment yeah no again an
incredibly important goal and something that obviously speaks to something that's very close to and near to my heart which is obviously around prevention prediction and but also person-centered care corner you mentioned that the first two parts of the moonshot that being around the reversible piece and and also around the precision medicine you're trying to incorporate international partners and flavors there as distinct from the last piece which is the platform for information would be dutch focused just in case anybody out there is listening who wants to participate in this project or contribute to it in one
one way shape or form are you looking for partners uh whether they be researchers funders how are you going about this thanks for this question david jess has told i'm a business developer so i'm always interested in contribution of everybody to know the disease very well we have to contribute with everybody in the world i think to to share all the knowledge together and to know faster and easier all the access to all the information about the disease so the contribution of researchers are very welcome also the contribution of consumers with oa or patients with
ra it's very welcome nowadays we work with a group of of dutch oa patients on our topics but it would be great when we could create an international cooperation or contribution uh working on these topics and the fun the funding part yes we are working on there are the first steps i have to say the first steps on an international fund for developing solutions for our for our goals nowadays we are mostly based and working on the funding of dutch people and dutch governmental situations but more and more from from europe side also with the
european foundations and european money but would be very welcome if there are people who can contribute to our idea of an what we call oa investment fund to invest in all kind of solutions for people with away and you may may not necessarily have an answer at this point in time and it may be something that you're planning to to work out as part of the roadmap for the moonshot but let's say for example there's already an existing database an existing cohort that's been developed that includes data that might be germane to some of the
content that you're proposing to work on will you look at and or try to optimize the use of existing data or are you interested in creating new resources to pursue the questions that may come from the moonshot i think for us we we do not have the intention of starting everything anew and by ourselves so for us the moonshots are really what we're trying to achieve and if that means making use of that what already exists and it actually brings us our one step closer rather than starting anew that is something that we are very
eager to to contribute to i think one of the advantages of our position in the field is that we can also connect research groups for example and see what different groups are doing and connect them in order to reach our goal faster so i would say definitely we would use existing cohorts existing data and trying to optimize its use rather than starting a new because uh that's not the most efficient i think yeah i completely agree with you now you may or already have begun elaborating on this but i'm just wondering if you could just
expand on what your immediate next steps are with this project and what if anything people out there in the community can look forward to in the near future yeah so what we are doing right now so as i said the arthritis foundation is really rethinking their own position and strategy and have been doing that for the past year so i have come in at a point in time in which we're really evaluating what are we doing right now and what have we been doing and supporting in the past years so for me directly i'm actually
uh working on a portfolio analysis to see where has our money gone for the last years and uh building a roadmap so we have a clear idea of what projects actually fit our mission if we get new researchers new call and research calls but i think what we didn't touch upon yet and what is most important on the short term notice i think for people with osteoarthritis or other rheumatoid diseases is the third moonshot about the platform and i think that can already be a value within a half year so that's actually something we're working
on right now to improve our platform to make sure that we are the number one to go to information platform for people at least in the netherlands when they need to find out the most up-to-date information about their disease and i think for the upcoming years and years after having this moonshot and having a very clear idea of what you aim to achieve will actually accelerate outcomes because what we used to do was we didn't focus as much so then you get a small results on a big scale of initiatives and i think we will
see faster improvements now that we have set clear focus in the upcoming years they're brilliant and i mean i think that that last piece i wasn't trying to move away from the platform because i think transparency and consumer awareness and provision of information is so so critically important on that note is there anything that you currently have available or anything that the dutch arthritis society might like to promote for those particularly listeners that may be listening in from the netherlands in terms of a website or a portal that people might want to go to to
get information as it currently stands yes we already have a website of course so they they at this moment can go to the website of the dutch arthritis foundation so roy my nail on ml but i would suggest like take a look in half a year or a bit after that because i think they will see a different information portal that they can find information on brilliant brilliant all right might move on to um what i call the closing questions and these are just questions that i guess get to know um you a little bit
better so that the the listeners can know what um what makes you tick but um what i might do first is just ask you why you do what you do what what motivates you yeah as i said when you asked like describe yourself in five words i said curious about the unknown and that is really something that is in my core so whenever there is an issue that we don't have a problem for yet and seems impossible to overcome that really triggers me and makes me very enthusiastic especially when it's for the quality of life
of other people so that's why i started medicine in the first place but the innovation part is what drove me to the doctor arthritis foundation because i can really i have the feeling that i can make a difference and identify a promising initiatives and make a practical impact on those living with oa and that is a combination of of science of technological innovation and the feeling that you contribute positively to other people's lives that is what motivates me i will maintain your enthusiasm and hopefully you'll continue to inspire other people out there who are working
in this field and make it make a big difference for those people that have arthritis as well now i'm not sure whether the word translates in the netherlands billboard but if you could have a billboard with anything on us what would it be and why i really like this uh a question well i would like to trade the junk food advertisements for the promotion of free sport subscriptions that will be funded by our healthcare insurance i'm thinking about a bill a billboard in 2030 i think but yeah that would be my dream to do that
it's a it's a great idea because i think there's a lot of information that gets provided that probably leads people down down the wrong path but there's a lot of behavioral change triggers and motivations that hopefully they can get fry by getting the right advice i really liked your question because i think a billboard really stands for what culture tells us is the right way to live and i think what we have tried to do with these moonshots and what we try to do as a direct arthritis foundation is really move from healthcare to health
i think that's a movement that you see in the broader scheme of things but i think that's what i really liked about this question about a billboard because it's not only about healthcare it's embedded in a whole society and the norms and values that underlie all of these choices so i think billboards are a very good marker to show what we as a society accept and find normal or important so i think when we've actually been able to make that shift from a junk food advertisement to free sport subscriptions that says a lot about uh
how our norms and values have have changed oh well i look forward to seeing that happen in the netherlands and we'll follow as quickly as we can now is there any one piece of advice knowledge or wisdom that you'd like to give for people out there who have osteoarthritis i think yeah as i said i'm still learning so much so i think i shouldn't be the one giving patients or consumers sorry advice i think actually i should advise myself to to listen still i'm still in the position of listening to them rather than providing advice
at this point very thoughtful very reflective yeah i mean i think we should all this we should all listen more and we should all pay pay greater heed and uh as one of these crusty-head white old men that sits in the ivy tower of academia i i offer too many opinions and probably don't listen enough so that's brilliant now joyce and corney who's unfortunately left us thank you both so much for your time for your insights and hopefully you achieve at least some of what you set out to do with this moonshot project it's lofty
it's really important and hopefully you'll make a big impact to the field but again today really appreciate your time thank you david so much and i hope uh anyone that is inspired by our vision and our moonshot feel free to get in touch because we are very interested to collaborate and uh to join forces to reach these names brilliant brilliant and we'll we'll include some of those details the notes for the show so that that way people can access it relatively easily thank you really thank you for your time and listening today about a project
that hopefully you find somewhat inspiring a lot of what we do as researchers is oftentimes making incremental small changes but i think it's really important to have people out there who are looking at making large lofty goals a reality and knowing full well about the impact that osteoarthritis has i think we need to make more than just incremental change and really try to shoot for the moon i really want to thank you very much for your time today for joining in and listening to the join action podcast and i look forward to continue to talk
to you moving forward thanks for listening to joint action with david hunter if you like our show and want to know more check out www if you have any questions you can email us at hello at jointaction.info and follow us on twitter at jointaction.org this podcast was hosted by david hunter edited by vicky dwong music produced by jordan hunter the information posted on this podcast is not intended to diagnose treat cure or prevent disease anyone seeking medical advice should consult a health professional [Music] you
