Hi, everybody. Thank you so much for joining us today. My name is Helen Burson. I'm the CEO of the Council of Medical Specialty Societies, an organization of 45 specialties in medicine working together to improve care. We're really excited to have you join us today. And this is the fifth of six webinars that we've done specifically on the topic of COVID-19 and clinical registries. We're very pleased to have received funding from the Gordon and Betty Moore Foundation and collaboration with the AAMC. We've also had a wonderful advisory panel, which included Susanna Fox, our moderator for today, who gave us great ideas about how to really think about how we could use this series of webinars to really transform the field through rapid cycle learning, through development to really thinking about what we could do differently going forward so that we're never in this situation again, not being ready to have the right data approaches in hand to handle what comes at us. We're going to, as Susanna mentioned, has been doing a lot of work already on Twitter. So please join us in the Twitter conversation using the hashtag COVIDRegistries and follow us at CMSSmed for frequent updates. Really pleased that all of our webinars, this is the fifth of our six series, are all available for free download, full recordings and slides and everything at our website. So again, this is just the beginning, as Susanna mentioned earlier, and really excited to have you join us today. So a couple of housekeeping items on the right-hand side of your panel, you'll notice there's a Q&A box. Feel free at any point to enter in your questions in that box. We'll queue them up, share them with Susanna and the panelists, and we'll then have a good opportunity to walk through those. We're also going to, you'll receive a short evaluation at the end of this, if you've registered, and we'd really welcome your feedback to make sure we can accelerate and improve in the future. And next slide. So one of the things we've really been trying to do as part of this webinar series is learn from experts in the field in terms of how we can advance registries and clinical research to transform practice and really transform our concept of what it means to have real-world evidence. I think what's particularly exciting today is the idea of thinking about real-world evidence from the patient's point of view, what that means, how that changes the paradigm that many of us in the biomedical space have been thinking about it. We really use this as a webinar series to build on each of the webinars. So our first webinar really focused on how do we accelerate the availability and access to electronic data that we should already have in hand to really be able to assess pandemics like this and other issues going forward. The second one was really thinking about how we leverage technology to advance the field when data are standardized and harmonized and readily available and integrated across systems and registries. So for example, we had several of our leading registries from surgery and critical care medicine, for example, talking about something as basic as what does it take to make sure that a cough is a cough is a cough, regardless of what data system you're in, regardless of what registry you're a part of. So really being able to push on some of that harmonization so that we're ready in the future. And then the last one we just had, which was really so deep, I still feel like I need to go back and learn more, was thinking about how we then can take advantage of more new approaches and cloud-based platforms and digital tools to help us support work around COVID-19, but really as a launching off point for many other future efforts as we move forward. So today we're going to shift our focus, as I mentioned, to prioritizing patient engagement and inclusion of patient-generated COVID-19 data. And actually, I think in retrospect, Susanna, even that title is not bold enough, having now seen these presentations. It isn't really patient-generated COVID-19 data. It's really, it's patient design, it's patient conceptualization. It's a whole different model of the way I think we've done our work to date. And I'm really proud of our specialty societies and others for recognizing that this is such a critical voice to have as part of this dialogue as we move forward. So I'm now, I have the distinct pleasure to hand this over to a friend and a colleague, Susanna Fox. Susanna has many interesting roles. I think she's really just one of these brilliant people who accumulates brilliant people around her and does great work, but she is a principal of her company, Internet Geologist. She's a former chief technology officer in the Department of Health and Human Services. She was a clinical innovator at the Robert Johnson Foundation and many, many other roles, including doing work, early days work on the internet and patients at the Pew Trust. So with that, I have the great pleasure to hand this over to Susanna, who will moderate the discussion and we'll come back at the end to do Q&A. Susanna, off to you. Thank you so much. It's really an honor to be part of this webinar series. As I have watched each of the webinars and learned from it and shared what I've learned with our panelists, it inspired us to really dig deeper into our own experiences and to bring forward some of the lessons that we think that we can share with this audience today. For example, during the July 8th webinar on real-time data capture, Subha Madhavan shared that she was calling for data science education and training in advance of a crisis like a pandemic. This panel is about how to extend that training to the patient population. The way that I started thinking about it is that we need almost a data science citizens brigade and I was really inspired by everyone who was able to sew masks when we needed them. I might have to give the slide. The slides aren't advancing, so I will just say next slide. We want to empower everyone when we need them to contribute to science, just like everyone with a sewing machine was able to contribute to the effort when we all of a sudden needed thousands of cloth masks. The COVID registry failures panel on July 17th was another point of inspiration because each panel has talked about how they only hold a piece of the puzzle that forms the full picture that we really need for understanding. Each registry is only solving one section of the puzzle and patients actually hold some of the pieces that can fill in those gaps. Community registries and patient-generated data can help bridge the gap. Finally, I also loved this wide open view that we took last week with a cloud-based platform discussion. I particularly appreciated David Glazer's point that the massive data necessary for genomics and radiology were what broke the old ways of data collection and storage. That's why those two fields of study were early adopters of cloud technology, genomics and radiology. Let's take inspiration to talk today about what fields of study need to be early to patient-generated data and patient-led research because the mystery of COVID-19 is still unfolding. We may end up with a vaccine or as this Atlantic headline tells it, it may be with us forever. This may turn out to be more like Lyme disease or flu or hepatitis, something that we have to live with long-term. We're also unfortunately facing the possibility of new viruses and waves of pandemics. So what our panel seeks to shed light on is aspects of data collection and clinical data registries that to a lot of people, it may sound futuristic, but remember the future is here. It's just unevenly distributed. And what we were able to do is recruit a panel of people who are living in the possible future and they've generously come back to tell us what they've learned. These are their notes from the frontier. To frame the discussion, just consider the following. If we have to live with the threat of pandemic long-term, what tools do we need to deploy? What skills do we need to build in our lay population, the people known as patients? Next slide, please. We live in a time when medical measurement has been democratized, when peer review can happen almost in real time, when connections among people solving similar problems can be made without regard to barriers of time and space. How might we better connect people who are trying to solve the same challenges and how might peer-to-peer healthcare be extended to pandemic response? How might we diversify our responses as we face mysteries like COVID-19? I was struck last week by an article written by Heather Hogan, who is in week 20 of living with long COVID. As she wrote, when she realized that her clinicians had no experience with what she was reporting, I was the science. We've brought together four speakers who've tried new approaches, who've built new types of data collection mechanisms, and who've incorporated individual patient-generated data into an existing registry. We're going to hear from panelists in the following order. Gary Wolf is the co-founder of Quantified Self. Gina Ossoff and Hannah Davis represent the patient-led research group within BodyPolitik. Emily Sirotich is the leader of the COVID-19 Global Rheumatology Alliance and the Canadian Arthritis Patient Alliance. Right after Emily speaks, we're going to have a short discussion just among the panelists. And then we're going to open it up to Q&A with you, the audience. As we go along, please feel free to add questions, which we will get to, and cue those up. We are so thankful for you being here. We are excited to learn along with you. So we're all going to turn off our cameras and hand it over to Gary. Thank you, Susana. That's a great introduction, and I really appreciated the I was the science comment and slide. It reminds me of somebody in the Quantified Self community who gave a talk about managing the chronic cardiac condition, which were related to his treatment for childhood cancer 35 years earlier, who said that his oncologist said, Rob, you're an astronaut. The number of trials on people who are 35 years down the road from their treatment is necessarily rather limited. So thank you. My name is Gary Wolf. I'm one of the founders of the Quantified Self community, which is an international collaboration of users and makers of self-tracking tools who share an interest in exploring their own questions with their own data. Not that interest is produced by curiosity or a need for self-expression or vocational interest in working with data, but many times, by far the majority of times, it's produced by attempting to understand a health condition. I see our work as responding to the guarantee in the Universal Declaration of Human Rights that everybody has a right to share in scientific advancement and its benefits. It's an aspirational guarantee, but one that really sets an agenda that is worth attempting to fulfill. My participation in a panel focused on clinical registries is necessarily that of an outsider. So today, I'm going to introduce what may be an obvious, but perhaps also a challenging concept to the concept of a patient registry, which is the concept of self-registration, a person-centered approach to recording symptoms, observations, and outcomes. Fortunately, I'll be followed by my fellow panelists who can show some examples of some of the changes in the concept of a patient registry that have been operationalized by patients themselves. Next slide. Everybody has questions. Next slide. That traditional research can't answer. This slide outlines the clinical trial approach, but observational studies typically follow a top-down waterfall model as well, with some guiding scientific and public health questions to find in advance so that appropriate research infrastructure and workflows can be funded and built. Next slide. But people still stubbornly want and need to know what is true for me. Next slide. I've gotten to know this process of exploring our own questions, using our own health data very well through my work with the Quantified Health Community. And I should probably say a few things about who we are. We had our first meeting in 2008 and spread to over 100 self-organized groups in over 30 countries. We have an office in Berkeley, California, where I live, that takes responsibility for organizing research, convening, funding, communication, advocacy, and some technical development. We've organized 11 international conferences, developed open tools, collaborated on policy and patient engagement, research innovation, and maybe most importantly, taking responsibility for librarianship and archiving of the work done in our community. Next slide. Specifically, we maintain an archive of self-research projects. This archive serves the community, but it's also a prototype of a knowledge infrastructure that allows people to share their discoveries, breaking out of the isolation of their individual work and building on the work of others. Next slide. The practices seen in the Quantified Health Community are examples of what has come to be called, both by us and by social science and science studies scholars, personal science. Personal science is the practice of using empirical methods to explore personal questions. The emergence of personal science responds to powerful human needs, and just a few bits of data to show that there's something happening out there. Data's work at Pew produced a report showing that 33% of US adults track health indicators like blood pressure, blood sugar, headaches, or sleep patterns. That was already seven years ago, probably many more. 30 million Apple Watches and 19 million Fitbit devices were sold in 2019. Right now, Duke, Scripps, UCSF, and Stanford currently use wearables data to investigate early warning of COVID-19 detection. I say provide, but I probably should have said investigate. These needs are both represented and amplified by media interest in new instrumentation and new capacities for individual knowledge making, such as the aura ring that appears in this tweet in the lower right of my slide about the NBA's response to COVID-19. Next slide. We live in an era of participation in which technological changes and platforms for discovering and sharing what we know and use and value have fundamentally transformed the systems of production in many fields. But I can see that a clash of approaches stands between biomedicine and the potential for discovery in today's everyday tools. Next slide. A patient registry involves uniform data, it's outcomes focused, it's typically oriented towards learning about a particular disease, and it's designed for predetermined scientific purposes. A self registry that responds to the needs of personal science would necessarily have to accept all data, including difficult data like free text and video and photographic data. I'm a member of the quantified self community who has a database of photographs with over 10 million images in it, and taking pictures of food, for instance, is extremely common in the quantified self community. It would be observation focused, and it would be oriented towards the kind of data you collect in everyday living. And most importantly, it would be, its purposes wouldn't be determined by predetermined scientific questions or even kind of general disciplinary scientific frameworks, but it would respond to flexible and self directed purposes that are very close to the people who are generating the data. So I'll just leave you with the question of whether this sort of self registration system is possible. We've learned a lot about it, but I think it's best to kind of get into the details in a dialogue with my fellow panelists and in response to questions. So I think now I'll turn you over to my fellow panelists, and they will allow you to think about, so they can allow you to think about some real examples of new approaches. Thank you. Hi, I'm Gina and I live in with me, and we're going to talk about our patient led research today for COVID-19 longer recoveries. Next slide, please. So I am Gina and I live in Washington, D.C. I'm a design and research consultant for the humanitarian and global aid base. I've been sick, well, I got sick with COVID around March 19th, and I knew pretty early on that it was COVID symptoms were super bizarre and, you know, they match some of the CDC ones, plus some extra ones, a lot of the symptoms have subsided, but I've had persistent symptoms on and off until today. And so that's been months, like headache, lung capacity issues, fatigue, and body aches. And I'm here to talk today about the work me and a few others did to help each other deal and understand our longer recovery times and symptoms and find answers for ourselves. And I'm part of a small research group within a larger support group called BodyPolitik, with Hannah as one of our core members, I'll let Hannah introduce herself. I'm Hannah Davis, I'm based in New York, I'm a research artist, my background's in data analysis and machine learning, usually for more fun things like generative music and generative art, but I've been working on using this tool set for this kind of patient led data since getting sick on March 25th, 141 days ago. Next slide. And so we were born out of the BodyPolitik Slack group. For those of you that don't know Slack, it's usually a group, it's a tool for people working in organizations to communicate with each other, but it worked very well for us. We have channels and based on topics, and you can see on the right hand side, that's an image of our Slack group. It was founded by Fiona Lowenstein and a few others in early April. I joined right when they started, I'm seeing an article in New York Times by Fiona talking about longer recovery times. It was super comforting and validating knowing I was not alone suffering with longer symptoms. I think a lot of people felt the same way. We were not getting answers from our doctors, CDC and the public health agencies had no literature on the longer recovery times. And the research group started shortly after the group was founded and that was like around April 18th. It was basically as you can see in this in the slack image, there's a research group highlighted down there. That was our little group. And you know, we started it because we saw people in the slack group, myself and a few others were asking questions of each other. Like what symptoms do you have? Do you have this symptom? What's your blood type? Things like that. You know, seem like we were trying to understand each other. And I felt like there was a need to do this in a more systemic way. And the interesting thing about us is like we're a multidisciplinary team. So we all have directly applicable skills, but it's very varied. You know, it's research, design, data, health, we have some doctors, we have some policy analysts. So it's a very diverse group in terms of our skillset. Next slide. Next slide. I mean, and as I said, I mean, we, you know, the motivator for this was we saw we saw people asking these questions in the slack channels. And we saw a systematic, we saw a need for systematic data aggregation and a patient centric survey. So, you know, I went ahead and I aggregated a lot of the questions, me and a few others that joined forces that were kind of, you know, doing similar type of thing. And we put it together in a Google form. You know, we looked at what, you know, all the symptoms that were not reported by CDC, people were reporting that were very common. Plus, you know, and I think we had about over 60 symptoms that we had on our list, plus an area where we could, you know, you could add more symptoms. Next slide. We were motivated and we worked really fast. You know, as soon as I, you know, I also put out the survey, we got emails and messages from others with impressive backgrounds in data analysis and research, and they offered to help as well. You know, we put out the survey, April 18, we got 640 responses, or we created on April 18, we put it out a few days later, we got 640 responses. And in less than like 10 days, we analyzed it and we published it. I mean, we were working, you know, evenings and weekends, you know, mainly in bed for me. But we were able to do a lot of the work and, you know, and see this coming together was a super powerful, empowering thing. Next slide. So I'll talk through a little bit about what we found. For the respondents, it was mostly young crowd compared to the narrative we've heard about the severe cases being older, mostly from the US, mostly white and cisgender female. So there's definitely biases in here. This might be because men have possibly more hospitalizations, women are more likely to join support groups and women are more likely to fill out surveys. So for our next survey, we're absolutely trying to get a more diversified set of respondents. Next slide, please. So a lot, we learned a lot of things. One thing was that we were just able to kind of capture the common phenomena that were discussed in the group almost every day. We captured a lot of symptoms listed outside of the CDC list, which was only like seven at a time, including that neurological symptoms were vastly underreported and were extremely common, like the symptom of brain fog and kind of cognitive dysfunction is actually as common as a cough at 70%. Next slide. We also captured that relapses and new symptoms are common. This is a very weird feature of the long haulers, but relapses where you kind of feel better and then get worse again, happened to 89% of people and new symptoms appearing at even months into the disease course was also very common at 70%. But the biggest thing we found that I, or that was kind of a really big deal was that we accepted people who had symptoms, not just people who had positive tests because at the time and still testing is just not available widespread. And so we actually compared people who tested negative versus who tested positive. And we found that the symptoms were basically the same between the two groups. But the biggest difference was that the people who tested positive got tested on day 10. The people who got tested on, tested negative got tested on day 16. And this kind of implies that these sets of people are being, are having the exact same disease course. And that kind of testing is not capturing a huge subset of COVID-19 patients. Next slide. And if you want to read more, our report is up at patientresearchcovid19.com. Next slide. So the response from the first survey was actually amazing. We got immediately kind of very, we had a connection with the myalgic encephalomyelitis community, which is kind of another post-viral neuroimmune condition that's been just widely under, under research. It took a little while to kind of build up press because it was this, this phenomenon of long haulers was kind of a new narrative. But Ed Yong from the Atlantic finally took a chance on us in June. And so early June, he released this piece that kind of made long haulers known, and that got us a lot of attention. One interesting thing is that we've actually been cited several times already, three times in the British Medical Journal, which is a pretty prestigious medical journal, and one time in Fatigue Biomedicine Journal. And the CDC also got the, got their, we got their attention. They circulated our report and we actually had a meeting with them this week. Next slide. And one thing I want to actually mention, because we have, we've talked about this among this is, this is kind of what citizen science citations look like. A lot of citizen science happens outside of this, you know, kind of normal research process and publishing process. But it turns out we, you know, when there's a big need for data and there's very little data, people kind of will make do with what they have. And so we, you can see in the first one, this is earlier on in the journey when it was still on Google. And so it's a link to a Google Drive. And then the second one from British Medical Journal that came out actually yesterday is kind of, it looks pretty formal. So I thought that'd be interesting to show. Next slide. So we're working on a second survey and this is, we're actually taking a different route while we're going through the IRB process. One of our members is a, the head of a neuroscience lab in London. And so we're going, working with her institution. So focus on a couple of things, antibody testing, because we're already recognizing that long haulers are not making antibodies in the same way that hospitalized COVID patients are. Focusing on neurological symptoms, which as I mentioned, are very prevalent, but very under reported. We're looking at mental health. We're looking at the symptoms over a longer time period because the first survey was only looking at the first two months and none of us kind of know how long this is going to take. A lot of us are still very sick. So we're kind of looking at maybe the first six months instead. And then we're also looking at diagnostics, like what kind of diagnoses people have been giving, given also test results and things like that. And for the reasons of diversity and trying to improve our reach, we're also translating and more actively recruiting participants. Next slide. So we've had a couple of questions during this whole process. I mean, one of our biggest ones is, is the, what's the value of the IRB and is it worth it doing kind of like a formal publication? We did retroactively get an IRB approval for the first paper in our publishing that, and we're going through the same process for the second one, but it is at a kind of a much longer time cost. And then another kind of thing is, how do we collaborate with people in a way that preserves our own autonomy? We are definitely making alliances with, like I said, the neuroscience institution and a lot of members of our group are doctors and have their own institutions, but we also have a lot of people reaching out to us and kind of finding that line. These are all kinds of questions that are still up in the air. Yeah. I mean, as Hannah said, we're still trying to determine the right model for partnering up with the researchers, but we are partnering up with the researchers that are part of our team and their institutions. So next slide. Yeah. I mean, in summary, the benefits and challenges, you know, what we have listed here, and I'm excited to talk about this more with the panelists, but, you know, being a patient led research team lets us ask the questions earlier. We understand the illness, you know, we were, the symptoms that were not even known to the public or the CDC or the doctors, we get answers earlier. Again, also the multidisciplinary thing that I mentioned earlier, I think is a big, is a big thing. Our motivation is not ego profit. It's like our own health. We want to get better. We want the research to be out there. Challenges are obvious. I mean, some of them are, you know, we're sick, it's hard. We may be a little slower, but we're motivated. And so we're getting the work out there. We're still trying to figure out our, you know, we are, you know, a community organized group, but we don't have a formal structure and we're still trying to figure that out and funding. And this is all being done on our spare time. So there is some challenges there. And then the challenge around the methodology, I mean, there's some, you know, you know, proper, you know, researchers are more like, you know, I guess, I don't know what to call them, but they're, you know, they have this idea that, you know, a researcher should not be the research subject. So there's some, there's some debate around that. And so thinking about, you know, what does that mean? And we are coming up with research that is very legit and valid and how, you know, there's some, we saw on Twitter, some, some threads around doctors not being able to research themselves. So that's really interesting. We're outside of the normal research system, so we don't get, you know, recognition, funding, policy changes are maybe a little bit harder to get because we're not directly associated with those systems. Yeah. And I'm looking forward to talking about this a little bit more. We probably went a little bit over our time, so I apologize to Emily. So Emily, I'll let you go ahead and take over. You know, our last slide is just our Twitter handles and all that, but I think you guys can find that some other, some other ways. Go ahead, Emily. Not a problem. And thank you for the introduction. I'm just going to orient myself on the screen here. So first of all, thank you for again, the introduction and thank you to the Council of Medical Specialty Societies for the opportunity to speak today. My name is Emily Sirotich and I am the patient engagement lead at the COVID-19 Global Rheumatology Alliance, which I will probably shorten for the rest of the presentation to the GRA. So from this presentation today, I'd really like to highlight three objectives. The first of which are that partnership with patients improves the design of clinical registries. Research driven by key partners and data providers amplifies reach of clinical research. And lastly, patient reported outcomes are reliable and valuable indicators of health, particularly in the investigation of complex and novel diseases. So the COVID-19 Global Rheumatology Alliance, or GRA, started with a tweet. A group of international rheumatologists came together on Twitter one day after the WHO announced COVID-19 as a global pandemic. From there, the COVID GRA was formed. Our mission is to collect, analyze, and disseminate information about COVID-19 and rheumatology to patients, physicians, and other relevant groups to improve the care of patients with rheumatic diseases. Our main activities include efficient physician-reported registry of people with rheumatic diseases with COVID-19 infections, the patient experience survey to collect data about their patient experience during the COVID-19 pandemic, evidence synthesis, and the dissemination of information to patients and health professionals. When considering physician registries, there are noted limitations. Firstly, patient reported outcomes are not sufficiently captured. Physician registries do not capture behavioral changes of patients regardless of infection status, and the physician registry does not include data from patients with mild symptoms who do not seek medical care. The COVID-19 Global Rheumatology Alliance engaged with patients by setting up a survey and by forming teams of patients with experience in the fields of research, communication, and collaboration to consult with for ongoing projects. Myself and the patient registry lead, Jonathan Heldman from Boston Children's Hospital, are co-leading the Alliance's patient experience survey. This international anonymous patient-facing survey is intended for adults and parents of children with rheumatic diseases, whether or not they have contracted COVID-19. The unique perspective patients have on effective medical treatment is our survey's strongest asset. It was designed to help participants communicate how COVID-19 is affecting them, whether they are infected themselves or not. With over 11,000 responses in one month, it is the largest international survey of people with rheumatic diseases so far during the COVID-19 pandemic. Currently, we have 13,110 respondents to the patient survey, of which 787 have a COVID-19 diagnosis. There are over 100 countries represented, and our survey has been translated into nine languages. All patients with rheumatic diseases or autoimmune conditions with or without COVID-19 are invited to participate. It was deliberately designed without patient health information and to be anonymous. Data was collected, was decided by patients and physicians, and we decided to collect clinically relevant data and patient important outcomes. The survey is IRB approved, and it is web-based. Data is hosted at Boston Children's Hospital, and the survey, again, is anonymous. Patients themselves were involved in creating the survey by providing input on relevant research questions, study design, and by contributing to various manuscripts that detail the program and its results. They also helped to recruit patient partners to the COVID-19 DRA by word of mouth. Patients were able to input comments and suggestions directly using the document sharing platform Google Docs. The survey was then sent to physicians, patients, and patient groups to further review and translate it into nine languages. It was deliberately designed so that participants could contribute anonymously. It was also designed so that there was no personal health identifying information and would receive IRB exemptions. The survey was deemed exempt by the IRB at Boston Children's Hospital, and the survey was disseminated by patients and patient organizations who supplied and created social media kits. To ensure the survey went to the right people, they organized a campaign to be sent to patient organizations and international societies. Recruitment through patient organizations that are supporters of the alliance increased the survey's reach to more than 90 countries in one month and a total of over 100 countries to date. It also ensured that it included people with a range of rheumatic diseases. Data elements that were captured in our survey include patient behavior, employment, decision to continue immunosuppression, the ability for patients to connect with a rheumatologist, as well as patient reported outcome measurement information systems, promise measures, which are validated tools to assess mental and physical health. There are many advantages of patient-integrated registries. We are able to inform the prevention and treatment of COVID-19 and understand the impact of the pandemic on all patients. There was a rapid mobilization of the rheumatology community through web-based communication, and questions were developed directly by patients and address the knowledge gaps that were prioritized by patients. Within the COVID-19 Global Rheumatology Alliance, there is a patient board, which was formed to support the mission of the GRA, and it was also created to establish with a vision to represent a culturally and regionally diverse community of patients with rheumatoid arthritis. This group serves to amplify the patient's perspective by sharing ideas, initiatives, and feedback with the GRA. Global Rheumatology Steering Committee. So in summary, there are numerous lessons from the Patient Experience Survey. As I mentioned at the beginning, these were the objectives from our presentation today. Firstly, partnership with patients improved design of clinical registries. Through our partnership with patients and involvement of patients from the beginning and design of the survey, we were able to collect relevant patient outcomes. Secondly, research driven by key partners and data providers amplified the reach of clinical research. We had 11,000 responses in one month. We were able to collect survey responses from patients who speak over nine languages, and that also includes over 100 countries to date. And lastly, patient-reported outcomes are reliable and valuable indicators of health, particularly in the investigation of complex and novel diseases. We saw that through the rapid mobilization of the patient community throughout this pandemic. I wanted to thank the American College of Rheumatology and UR, our corporate sponsors, and most importantly, the patient community. Without whose support, all of this work would not be possible, and thank you to the organizers of this webinar for inviting me to speak today. And I think that transitions into our next session. Yeah, no problem. Thank you so much, and I'll ask everybody to turn their cameras back on if you can and unmute, because one of the things that I was really interested in, since all four of you have these different perspectives, was actually hearing from you about the questions that you have for each other. And so we're gonna use the old-fashioned raise your hand and I'm gonna recognize you just for queuing among us as discussants, but I'm also gonna remind the audience. Some people have started putting in questions, we're gonna get to the Q&A with the audience, but please keep feeding those questions, because we're gonna get to you soon. One of the questions that I actually had as I was listening to each of you talk about representation across borders of countries, representation across ethnic groups, gender identity, all the different ways that we actually really need to understand something as complex as COVID-19. I would love to hear from you about some of the observations that each of you have in terms of working across borders. Gary, you've been able to create a movement that has representation in groups in 30 countries. Emily, I honestly, like, I love how you were able to brag. Honestly, 11,000 in nine different languages is incredible. In one month. And Gina and Hannah, you're also working on that question of representation. So a question that I had is if you have observations, please share them, but also what resources were you able to tap into, Emily? What resources did you wish you had, Gina and Hannah and Gary? So maybe I'll start with Gary. Just observations about working internationally and making sure that you're hearing from a diverse cohort or observations about personal science in different countries? This has been, this has been really a part of our work and fascinating, but also extremely challenging. When our participants, we serve our participants, and our participants are in many different countries, and many of their questions are health-related, really challenging health-related questions. And in their mind, questions about their condition, interventions, diagnoses, are mixed with questions about their health care, right? Because they rely on the health care system in order to answer their questions. So they can't do everything for themselves, obviously. However, the tools of self-research transfer very easily between countries. But the health care systems are incompatible. And so you just have this situation in which you have a human need, a personal need, and we can kind of help with one part of it. But as soon as it crosses over into the biomedical needs, it starts to become very difficult for us. And so difficult that I'll just frankly say, over the years, it didn't start this way, but over the years, our work has moved further and further away from the biomedical paradigm. We really focus on helping people learn, both individually and in groups, about themselves. And we focus very little on serving the research community or a user whose output and whose kind of rewards are measured in, for instance, scientific publications, especially kind of clinical publications. It's simply clashes, really, or just on a practical level, it's very difficult to execute. All right, I'm going to turn to Gina and Hannah next for that question about representation and international work. Yeah, I mean, I think in our case for the first survey, you know, we were trying to get things out sooner than later. And so while we did, you know, luckily, you know, we were working within the body politic group, and that wasn't international. You know, we had people from all over the world. I mean, COVID was spreading all over the world. I mean, COVID was spreading, you know, it spread faster. It was earlier in other countries before it came to the U.S. So there were people in our group that had the longer symptoms, and we were actually learning from them. So, you know, we brought in, you know, we had people in our group, actually in our research team. Hannah, not this Hannah, in a way, she's Canadian. Athena lives in the U.K. So we were, you know, you know, so we had that advantage in an analysis part of time, at least, where, you know, we got the perspective of the different countries. But initially, when we developed the survey, I remember, like, yeah, there was challenges. I mean, ideally, if I, you know, had spent maybe a little bit more time, that's what we're going to do for the next survey. I mean, there's simple things, like, for example, the medical terms, you know, we want approachable language when you're talking about medications. Like we would say, are you using Tylenol? Tylenol is not, you know, or like Advil or like things like that. No, these are things that you want to get in the language of the people. And, you know, these are things that we figured out after we pushed out the survey that, hey, maybe we should have And so for our next survey, we're translating. We actually already recruited a bunch of people from different countries. And it's really cool to see the work that Emily has done. And we maybe want to collaborate with you to learn from that experience. But we, you know, it's definitely a priority for us to do that. I mean, we were working within the confines of our group, the body politic. We did try to, you know, disperse it, disseminate it outside of there. But I think we're going to be a little bit more deliberate this time. I don't know, Hannah, if you want to add anything else at all. Yeah, I definitely agree with that, or being more intentional this time. I think the first survey, we were all just like all we wanted was kind of recognition and validation that this was even happening to us. We were all just basically feeling a little crazy. And the survey has a kind of different objective. I would add that one other kind of strange part of this. It has been that because this is so new, we're kind of making up a lot of our own vocabulary. So like in the group, we'll say like, oh, the lung burn. And, you know, that's like the term that all the English speakers like use for this very specific kind of weird, weird lung pain. And so in the in the translation, I kind of suspect we'll run into issues with kind of translating those kind of unique symptoms as well. Emily, what do you say? I say that it's a very steep learning curve when designing surveys, especially in something that is so new and changing. We were very lucky that we were able to collaborate. It was honestly through Twitter, the power of Twitter and social media that we were able to collaborate with so many, you know, researchers, physicians, as well as patients around the globe. And a lot of those who work with us are, you know, from different areas are able to translate and offer translations to their native language. So that was very helpful. And we found it very important. But there are, as we're saying here, there's definitely difficulties when translating different languages. One thing I've learned in terms of representation, so although we have, you know, I think up to 13,000 or more responses now, a lot of that is skewed to females who are white. And really prioritizing responses in countries who are, you know, not represented in our current survey and ensuring that we're getting information from all parts of the globe because everyone will have a different experience of COVID-19 and will be coming from a different perspective. So that's something that we're prioritizing for our next survey, which Dean and Hannah, we would love to collaborate on coming up. Yeah. Great. So now I'd love to know if, in hearing each other, what questions you have. Gary, I see your hand. Yes, I have a question for Emily and Hannah and Gina. Based on what I've seen happen in the past, I want to know how you're thinking about the user of the output of the registry work that you're doing. And think about it in answering in light of the user demand. And in particular, if the user of the output is a scientist or a clinical researcher or a biomedical user, over time, the original surveys are really very powerful because they're kind of like surfacing things that nobody knows about. But over time, those demands become more difficult to meet. There'll be demands around validity and around harmonizing vocabulary and around representation. And so the demands rise, and then the time and energy you have to spend meeting the demands rises, which requires kind of leadership to emerge and organizational structure and funding. And so when I look down the road for—Emily's already in this, you know, place, the kind of more biomedical place—but when I look down the road for Gina and Hannah, I feel like, do you become kind of an arm of the biomedical research enterprise? And your function for the participants is to surface their concerns, which is very, very important, but doesn't capture maybe everything that they get out of participating in the community. And so how do you see that challenge? I actually think that one thing that has been surprising for me is realizing how formally biomedical people are actually taking even the first survey. One of the things that's really different about our research group compared to some of just like the social media surveys that have been popping up is that we all had kind of statistical backgrounds or medical backgrounds previous to COVID. These aren't like kind of new skills we're learning. We did statistical analysis. We did basically everything except for getting an IRB. And so I think that it's going to be really easy for us to kind of stay in that vein, just because we kind of value that ourselves, maybe, and we do want to be part of that. I think the thing that is going to be a challenge is kind of the organizational structure going forward. And do we want to be our own unit? Do we want to partner with a bigger institution? And I think my own feeling right now is that obviously a bigger institution would be amazing for funding, and we do need funding. But we have had so many difficulties. You know, both of us have been sick for going on four and five months. It's a really long time to not have validation from the medical community. And at least I think my own sense of hope and faith in kind of what they can do for us formally is diminished right now. So I do want to kind of prioritize thinking about the user as like the long haulers, the people who are the thousands of us, hundreds of thousands of us who are experiencing this and getting validation and trying to talk about, you know, what has crowdsourcing recovery, what has kind of, you know, helped us and kind of being those answers more than anything else. Yeah, definitely. And I love that question, by the way, because I do background is in like participatory design, research, human-centered design, and, you know, thinking about the user is central to like how I work. And so I think when we first created this survey and the work, I mean, it was very much, we were not thinking about actually, you know, anybody else but the patients. How can we help ourselves? The answer to that was our number one user. But it was interesting because right when I was doing the survey, I remember, I mean, because I, you know, my brother's a doctor, I have doctor friends. I wanted to get their perspective because like, if I'm going to, if we're going to cater to ourselves, we want to make sure that they're going to listen to us too. But they're secondary, honestly, like I want to answer our questions first, but I want to make sure that they can look at this. You know, we adjusted some language in our report. I remember specifically because of feedback from some of the doctors we talked to. We were like, let's, you know, we don't want, we don't want to like, you know, turn them away from the report. We want them to be able to consume and use it because they're going to help us in the end. Similarly, policy. We had a policy analyst on our team. She thought about something and she gave us some feedback. So I think the multidisciplinary part of our team is helping us think about the other users. But we are centering ourselves as the main, you know, what is our needs to get satisfied? And how are the other people going to help us get these needs satisfied? Which I think is a little bit of a different angle than how other research is done, you know? And I would love for this to continue. And I think any kind of funding or organizational structure that doesn't do this, we're not going to want to partner with them potentially. We want it to be following that model is our hope. Emily, what's your reaction? Who's the user? That's a really great question. So we are a little bit in reverse, I guess, compared to Gina, Hannah and Gary. We are started with the biomedical model. So we have our whole, you know, slew of patients who are involved. And a lot of us are double talented, like everyone, like Gina and Hannah, and I'm sure Gary, who are, you know, researchers or some other role as well as patients. So at the beginning, our first user, I believe, would probably be the general rheumatic disease patient, not even specific to those with COVID. We were more interested, or we are interested in a lot of things. But our first priority is, should these patients with these immunocompromised conditions, should they be altering their behavior and their medication? Should they be worried about getting COVID? If they do get COVID, what happens? Is it something to be alarmed about? And the model that we've used for, you know, knowledge dissemination or sharing our research with the public is first making sure it goes through peer review. I know that's something that a lot of our presentations have mentioned briefly is looking at that peer review process. It does take a little bit of time. The way we've done it, we've done the peer review publications first, and we have now integrated a step where we've created lay research summaries so that all of our publications, all of our research that has been proven and approved and looked at is actually put into plain language so that the general population can understand what did we find and what does it mean to them? So that's our user, I guess, is both the organization, the institutions who can learn and create guidelines, recommendations from our data, the clinician on how to treat their patients and how to answer the patient questions, but also the general public on what it means and what we found. So that's my response. Great, thank you. So we have about three or four more minutes in what I reserved for the panelists discussion. I'm happy to say the questions are really coming in fast from the audience. But let me hear anything else that you guys, Emily, do you have a question for your fellow panelists? I do have a question. So the concept of personalized medicine has been something that's been coming up. I have a little bit of a genomic background where people have looked at, you know, genetics and said, you know, if you have a certain mutation, you'd be able to have personalized medicine approach. How would you think that the work that your organizations are doing falls into personalized medicine or does it? Great question. Gary, you go first and then I'll come to Jean and Hannah. We got kind of deeply involved in thinking along with some of the leaders of personalized medical research in the U.S. and the All of Us initiative and stuff going on there for a while. But what we found was that the framework of personalized medicine is very much on medical interventions, on delivering, in a sense, on segmenting the population down to a segment of one until you know exactly what intervention to apply to that single person. Whereas in the end, a lot of the questions that people have about their own health, they're not really about evaluating medical interventions and their outcomes, or they're about that, but at a very, very fine level that might include things like splitting a pill in half and taking it at two different times of day, right, which is kind of an output that you're never going to get really from the biomedical research enterprise. Don't split it in half, split it in three parts and take the first one at 6 a.m. or something, right? It is, in a sense, personalized medicine, but only if you really see medicine as a synonym for health. When you think of medicine as kind of sanctioned medical interventions that have a research base behind them and can be approved by the various processes of assessment that biomedicine uses, most of what we do doesn't qualify. Go ahead. I think that, you know, we're definitely not doing personalized medicine in the traditional sense, especially because we don't really have that many solutions yet, but what I will say is that one thing we're kind of recognizing that we're facing is that there's kind of a tendency to lump all post-COVID symptoms into one condition, and we've also seen that with myalgic encephalomyelitis, where, you know, people have just vastly different presentations and are treated as the same. With COVID, I feel like I would say that people kind of settle on like one or two parts of their systems are kind of, you know, continuing to give them symptoms. So, like, for me, I said I don't really have respiratory issues. I don't really have GI issues, but I've had pretty serious neurological and cardiovascular issues. And some people, you know, could be maybe treated with exercise, where absolutely some people should not at all, and it's actually really dangerous for broad advice, like, please just up your exercise to be given to this entire population. And especially from people who haven't had COVID, we're seeing a lot of that kind of broad-spectrum recommendation, where our symptoms are the same only basically in that we all had COVID, and, you know, that there are definitely clusters, but the recommendations need to be heterogeneous. I guess, Mia, I mean, I would just add to that is I think the personalization that's happening with the medicine is, you know, when you're empowering people with data that, you know, they can take, it's almost like you're letting them take it into their own hands. I mean, it's a partnership with the medical health institutions and, you know, doctors and whoever, but you're giving, you know, I felt like I was able to, you know, a lot of us were able to take our data and be like, hey, this is me in comparison to a wider group of population, and this is what we're seeing. Hey, doctor, what do you think? You know, they're doing this test. I think you should do this test, too. You know, like, we're learning from each other, and I guess that's how we're somewhat personalizing it. We're looking at other people's data, and we're looking at what we need, and we're partnering up with our medical institutions. So I think it's empowering people with the data to be able to have the conversation with their, you know, medical staff or healthcare providers. Great. So I, there's so many questions from the audience. Gina and Hannah, unless you have a burning question for your fellow panelists? No, it's okay. Go for it. I just want to say, Susanna, that you guys are lighting up the QS Slack right now. Oh, good. And I should say that we're getting so many questions, I fear that we're not going to be able to get to them all, but the organizers are actually going to send them all to me, and I'm going to put them on my blog. So that we can just continue this conversation, and there's lots of offers to help also. So stay tuned, everyone. This is, we're forming a community as we sit here. So one of the first questions is from Sarah Rigger, who is an e-patient in Sweden, and she is a patient who does research, and so therefore has a really salient question for all the panelists. How do you define a patient? How do you define a researcher? How do you decide who gets to be a patient? I was intrigued and not surprised that Emily, you're a PhD student in research, that Hannah and Gina, you guys are both have background in research. So when do you allow people to be a patient versus a researcher? And where is the line? How do you figure that out? And I'll maybe, I'll start with Emily. Yeah, that's a really great question. And I don't want to impose my definition of a patient on anybody. And so when I'm asking for contributions or for those who identify as patients to come forward and contribute, it is an open call for anybody who puts forward themselves as a patient and self-identifies as one. Researchers, I also feel like the same situation applies. I will never judge or put my own perspective on what I think a researcher is. I think a researcher is anybody who's interested in collecting information to answer a question. And that's what I go with. Great. I'll go down the line. Gina or Hannah. Sure. I mean, I mean, I think, you know, yeah, I like, I like what Emily said in terms of, you know, I don't want to define who the patient is. You know, we're, you know, we, you know, and especially with the COVID, it's a very, it's a very interesting situation with how they're diagnosing COVID-19. And so, I mean, part of our, I think that was unique to us was we were, you know, we were like, especially in the beginning in March and April, many of us were not afforded tests. We were, you know, we know that the tests are very faulty. So, you know, anybody that wanted to, you know, wanted, felt that they were a COVID patient for whatever reason could contribute to, you know, being a patient and contribute their answers. And the research, you know, is going to be aggregated in a way that would differentiate based on different, you know, criteria. so and that's fine. I think the question of you know the who's a researcher I think to me it's more about because you know I was at the beginning and I think this is more now of a collaborative process you know I was somewhat deciding who is working on our team and who was you know volunteering you know I you know I think it was based the question is more you know who who's gonna be able to contribute in a way that's gonna help move us forward it was what was it was in my mind you know it was and not everybody was a researcher actually we had people that were contributing to the research effort into the work that were backgrounds were not in research but they were they were amazing and they were very helpful to the work so I think you know and I think it does require some level of you know leadership on the from the team members to make this to make to bring in you know the different efforts and different people in but yeah I mean and I and I think you know again like I hate labeling people as you know researcher patient but I think it's more about you know how do you you know break barriers but then how do you also allow the work to happen in a way that's not I mean one of the issues that we are having that we didn't list it is you know collaboration with a lot of different people a lot of different groups slows you down big time and so how do you do it in a way that's efficient and like get things out there and bringing in the right minds in a way that's gonna be fruitful right I think that's the bigger question in my mind hey Gary did you have a reaction I would like to know how leadership emerges especially for Gina and Hanna because I think these as in terms of prioritizing collaboration also you know kind of what Emily said about being able to broaden the definition of a patient that's a leadership function and it's something that's under emphasized as we pull ourselves together as people and patients what are our leadership structures who are our mentors what are our best practices who are our funders these things you know that they're not on our minds when we start but they quickly become very important great next question is from Mary Beth Schoening she writes Gary mentioned getting further away from serving the research community and being separated from the medical community what suggestions do you and the other panelists have to bring the pieces together and this is this is a really interesting question if you don't mind I'd love to hear from from all of you who wants to go first you can raise your hand it's a time I'm a Jerry all right I won't I won't hide the fact that Suzanne and I have talked about this at length over years because we've been working on this problem and I I'll just give you the conclusion which is I think that we're missing an institutional entity in this space I don't think it can be the research group at a university I don't think it can be a disease focused organization I think it needs to be a major funder who sees the big picture and who allows new leadership to emerge that combines both parts of the problem I have been part of too many in fact I will won't do it again like advisory groups for biomedical research projects and these advisory groups are really pro forma in many cases not I'm not saying in Emily's case is an exception I think to a general rule which is you just put you go maybe but the maximum funding is to like go to one meeting where you sit around and there's some output and then you don't hear about anything for three years and then you get like the paper link or something like this this is not the way to do it you're really genuine commitment on the part of major institution that sits above all the different players to say that this collaboration needs to happen and that's a multi-year commitment that involves identifying the leadership and the best practices great so whoever's listening that's what we need other so Emily you you you've actually done a little bit of this bridging so what are your observations um so I think in my experience I feel like Gary said we are an exception but I don't want to use the word exception I want to use the word innovator and initiator of change I believe that if we separate research biomedicine and patient contribution the further we separate those without like Gary is mentioning and suggesting we need institutional change we need structural change for how patients can contribute and meaningfully and not just coming to a meeting having one you know session on an advisory panel we need integrated partnerships so I think the future relies on having a partnership where patient contribution is equivalent or considered equal to having you know investigators researchers who spent the career on certain questions we've also spent our lives on certain you know situations so I think bridging those means partnership and I hope that we can set an example for future work Gina and Hannah reaction to that I'll just add that I think yeah I agree with everything you both said I think that you know I think one thing to take in mind is you know the work is being done right and I think the question is what can we learn from these experiments you know I'm all about like hey you know there's prototypes out there let's learn from what happened and like improve upon it and see what can we do to make this even more you know scale it make it happen more often and I think you know somebody looking at a higher level with some funding and some you know I for this or like it values participatory type research you know and this is all not only in the medical community although I mean we are focused on the medical I believe this is like needed for all problems in the world in my mind you know and somebody that can see that and can help drive that forward Hannah okay great the next question is a really kind of a nuts and bolts question for the the two groups that have have done a survey is from Christopher Wolf keel a fundamental tenet of clinical research is identity verification have any of these studies included online methods for identity identity verification no the identities don't need to be reported but we have to know who is who essentially and so I'd love to hear from Emily or Hannah and Gina about how you handle identity verification if you handle them I mean I did if that just means but I think then I mean the first survey we used Google form so it tracks the individual users email address and then but again we weren't really kind of going through the formal process and for this next one we have like a slightly more advanced pipeline that kind of obscures the data but has you know moves the the patient's information through a de-identifying system so that we don't see it but that's the extent of what we've done yeah we relied on Google forms on that although we did so there's a feature in Google forms right where they can manage the identity man identity but they don't give it to us so we don't know because we wanted the users to be anonymous that was another thing we you know we realized that was very important but you know but one of the that was one of our limitations was you know you required the Google setup so now we're moving to Qualtrics which and then some other identity management stuff like Kenna was saying but we're anonymizing and so we did think about it but we let the tool handle that for us and we're gonna do it now but we're gonna do it a little bit more sophisticated way where we allow more people in without requiring a gmail account so for us we do have time but so we we don't collect personal identifying information when you ask what identity verification I'm thinking two things one that it's not a robot or two that they're not a patient for the not a patient I again it goes back to the previous question of how do you identify the patient and if someone feels that they can take the survey and answer those questions I am NOT going to tell them not to as long as they fit the legibility criteria of being an adult or a parent of a child with a rheumatic disease they are welcome and eligible to participate we do not collect email personal information however we have demographic information we have conditions with some medications and when looking at the data from the survey and reporting that we are also creating some type of filter system so that if patients or people who did not felt the survey and provide basic demographics their condition as well as medications they would be excluded from the analysis so we are putting that in as a quality control feature but we are not having any verification if those two thought processes what you're referring to great interesting there's some really specific questions about for Gina and Hannah about whether for example you of your group do you know if people are part of your group who may be taking the survey who actually have recovered from COVID who are not long haulers and have you actually thought at all about specifically recruiting people who had the what what we now think of as the the previous understanding the classic version of COVID for a comparison and even there was somebody who asked a question have you thought about recruiting people who who have not had the virus just as a comparison I'd love for you guys to talk about that I mean yeah I mean so so when we talk when we created the survey initially we thought about that question you know do we want to recruit outside of the long hauler you know and we knew that we're you know the selection bias is we're gonna get people that are gonna respond to it that still are sick and then we you know we and we wanted to understand that cohort of people and see what's going on with them we did ask a question we have in our both surveys you know are what did you recover and we were automatically calculating the date to see you know you know how long the recovery is I think there's there's the recruit you know there's I think we are talking about recruiting or doing a separate study to compare the long haulers the you know the short shorter duration symptoms and the non sick people but doing a potentially a separate survey because I think the recruitment and the the way you go about you know disseminating the survey and you're and the methodology should be very different because there's because you know I think you know sending out the survey to people that are less motivation to want to like you know participate and so you're definitely gonna get a bias with like who's participating we have to you have to do that very carefully we've been thinking about that for sure Hannah do you want to add anything I mean our plan right now is to do the survey we're working on right now is incredibly long and we really think that it's going to be filled in mostly by committed people who kind of want to get this information out there so we are doing a second short very short survey on just basically trying to capture what percentage of people go on to be long haulers we have very very few numbers actually to that to that regard we've seen from the CDC that it's 35% of people are not recovered by three weeks which is kind of like the informal definition of a long hauler that that we've been using and even in in young people age 18 to 34 with no pre-existing conditions that number is still 20% and so it's it's definitely very high number and there's not a lot of data on it the slack group the support group itself is actually not for long haulers there are two long haulers specific ones on Facebook and so we did have a lot of people who as Gina said recovered and we found that at least the the group of respondents who responded basically 80% of people were long haulers 20% were recovered by four weeks yeah yeah we're following research that you see us I'm personally following research that UCSF is doing on this because they're gonna be doing it I think a little bit more you know in a way that I think the numbers would potentially be a little bit more reliable because they're checking every single patient that is diagnosed with COVID and seeing what their long-term recovery is I think that's probably gonna be you know potentially more accurate because self reporting on the on the length I do feel like we might be getting more of the people that are still sick you know because they're more motivated so we'd have to figure out how to recruit in a way that's gonna be less you know biased with the people that are motivated to fill out a survey great I saw Emily's hand and I saw Gary's hand so Emily I'll come to you and then Gary to you okay I don't think this needs an answer right now but I think this also begs the question of what the definition of recovery is and what's the definition of long COVID versus COVID is and I think that needs to be considered moving forward and I'm sure that researchers and CDC and everyone else who is researching COVID is considering but I I don't want to have an answer but I think that's just something to bring up and yeah sorry you can go ahead I just wanted to underline something because I think people who are watching are seeing kind of an inside discussion and I think it's really useful but that moment was a moment when somebody asked a question about a really sensible research question that they have but also I have it in mind that Gina and Hannah have a community of people who have questions right and and so one can these things they seem close together but they can really diverge quickly because there are lots and lots and lots of very reasonable research questions that could be addressed and step away from the community actually caught something and you know so it's it's not that there's an answer there but I just think that's very classic kind of question that emerges when people organize themselves their own questions and then get interest from all the other questions that are out there that could be answered great so we have about four or five minutes left in the Q&A and so there's a very interesting question from Yana Lambrinidou do we need to change how we make science to include expertise outside academia what are the main obstacles to achieving this what's the problem with and here I'm not able to understand it it's we've not seen patients as promising knowledge makers so again how do we change how we pursue science and and again people who understand the history of science know that you know it wasn't always scientists who were pursuing science and so I actually see a lot of this as a movement back to the beginning where you know all of us have the equivalent of a medical office possibly on your wrist and and so how do we how do we bring in different kinds of expertise into the creation of science and discovery raise your hand if you want to go first so Hannah and then I'll come to Emily I would say in my own life one of the things that has been consistent and what I work on is kind of working at the intersections of a lot of different fields I studied interactive technology for grad school and it was just kind of one of the things they did is everyone who came into the program was from a different background and that just kind of led to projects that you just never would have done on your own never would have done if you were saying within your field I think if anything kind of the issue we're facing is that like this country and and people in general do a really bad job at just believing other people's subjective experiences especially when they're very different from their own and the scientific community and the academic community I think are two of the worst at that where you know I'm an independent researcher I have published papers but I've always had to kind of find and cling on to someone who like is that a real is real institution to publish and I think that you know kind of validating other people's experience as worthy and validating other types of data collection that are kind of outside of the norm that we've all grown up with is really important and one thing I've been interested in and really know very little about but I've been kind of trying to learn about are kind of these like indigenous methods of collecting data and just learning from past types of you know storytelling and information dissemination and you know there's just a lot of ways to kind of do this and I think being open-minded in that regard is probably the best solution we have great Emily I I think this is a really great question I think it somewhat connects to what we mentioned before but I I feel like we shouldn't almost abandon science of the field completely I think we need to revolutionize the field of science I think science has done a lot I think there's room for improvement and I think this is the time to revolutionize is showing look what we can do look what we have done and this is where we are headed all right I think I might let that be the last word this has been an honor and again the conversation is never over we are going to continue to have a conversation in the hashtag on Twitter I'm gonna blog about it there's always going to be space for continuing this conversation thank you everyone for the questions and thank you to the panelists I'm hearing the crowd roar the virtual crowd applauding you guys thank you so much and I am gonna turn it back over to Helen thank you so much that was an extraordinary webinar we I think we could have gone for another hour for sure based on the questions and the engagement thanks to all of you I'm really excited that the recording of the webinar will be available shortly on our website will all I think need to go back and review this one I've been trying to tweet live but it's it's so distracting because you were just too interesting so I only popped out a few but at the end of this you'll get a short evaluation we'd love your feedback to help make these better and if you have any questions or need more information please contact us at that email address and then next slide please Julia we'll just wrap up here letting you know this is webinar five of six of our total on COVID-19 and clinical registries and another really important macro area in addition to patient engagement has been what has been so clearly unroofed by this pandemic as well of understanding what's been happening in terms of clinical disparities and we're really excited that our sixth and final webinar is going to be on September 1st in the afternoon and it will specifically focus on how we can think differently again how do we use data how do we engage patients how we really begin weaving disparities into everything we think about in clinical research in outcomes measurement and patient report outcomes all the rest of it so you'll see here the speakers that are listed to be an extraordinary panel Kristen Bibbins-Domingo many of you see on Twitter very commonly talking about COVID, Clyde Yancy, Eliseo Perez-Estable from NIMHD and Bill Wood bringing his perspective from the American Society of Hematology Registry so we're thrilled to have had this great webinar today we look forward to having you join us on September 1st again please go to CMSS.org to see any of the prior five webinars with all the recordings and slides and again special thanks to all of our panelists and especially to Susanna who has made this not just a moderation but truly a passion and something we have all learned so much from I can't wait to see the blog and everybody have a great summer and stay safe wear a mask bye-bye thank you

COVID-19

clinical registries

patient data

pandemic preparedness

self-registration

long COVID

patient-led research

BodyPolitik

rheumatic disease

multidisciplinary teams

patient-centric models

funding structures