 Hey everyone, thanks for having me. So my name is Bastian. I'm a senior researcher at the Alan Turing Institute And I want to talk a bit about about nothing about us without us or Participatory approaches for data by the people for the people and I think today be heard already a lot in the keynotes And other talks about building inclusive communities and talking about That we want to like be inclusive and having like growing communities But I think mostly we've talked about having communities of People which are kind of in the room, which is data scientists software engineers people that are somehow in the field But I want to really talk about growing it out for like the general public or a broader audience involving those affected by our research and The idea of the nothing about us without us comes from it's like an old and long-standing idea But it really gained popularity in the disability rights movement in the 90s Where it picked up steam with Charlton's book by the same title And since then it has been adapted into many different topics There's like for example like the shared goals of the harm reduction and sex worker rights movements or transgender research And there's like a clear political stake to doing so It's the right thing to do for doing ethical and inclusive research is talking to the people affected by the research But maybe that's not necessarily the only reason and it's maybe a bit Self-serving but to say actually it's also about which is where the domain expertise actually likes if we are data scientists Maybe we are not the experts in the field of the topic. We are trying to do research on In this example here. It's Sarah regarri who is a patient with Parkinson's and we can see here Sarah defending her PhD that she did on her own Parkinson's data that she collected and analyzed herself And she made this really cool infographic which shows that from all of these like blue points Are one hour and there's like 8,765 hours in a year and only one of those Sarah spends in actual health care with like a professional in neurological disease the rest of the year She manages her disease by herself and she says well look who is probably the real expert on treating my Parkinson's Is it me or the person I see one hour a year? So I hope that convinces you a bit that this is like a really interesting and relevant topic But the question is how can we do participatory data science and I've brought you two examples of projects I've worked on in the past or that I'm currently working on the first example It's in the field of transgender health and it's the trans biome and trans biome comes from the idea that again There's like this mismatch between what the trans community actually wants to be researched and what academic researchers actually do If we look at academic research a lot of it focuses on trans related medical policies like short trans people have health care Or like should we think about sexually transmitted diseases in relation to sex work very often or like trans people's mental health What many people actually would like to researchers like so how do we actually do the best way of doing hormone therapy? What's the side effects we can expect when we start hormone therapy? How does it affect fertility things like this or also if we do gender affirmation surgeries What are the best types of surgery? What's the best postoperative care and so on? And this is a very real problem And this real problem comes to me or came to me a few years ago in the form of Clara I was a student in Paris at the Institute where I was currently working at the time and she came to me and said So I have this big problem that I actually get vaginal infections just like this woman But if I go to the gynecologist, no one can help me No one knows how the healthy microbiome should be looking like and so she wanted to actually become a gynecologist To actually do some kind of research as self-defense to actually provide health care for her own community and Very concretely for the neo-vaginal microbiome the problem was that there is like maybe three studies that were done on Trans woman like doing on trans woman is really the key word here because it was done by medical professionals Had no interest beyond having a convenient sample in their hospital and did really shitty research Compared to this woman, which also are not really well studied Granted but trans woman like they as we can see I have it a lot worse And that's not because it's a new thing these surgeries have been done for 60 years and just no medical professional ever care to do proper research together with trans woman So Clara went ahead with our help in my lab to actually Design a study together with trans women in the larger community to a sequence the microbiome samples of Trans woman from across Europe. So we did a Study together. We did a crowdfunding project. We raised 10,000 euros across Europe and enrolled 50 trans women actually in this project from I think Germany France Belgium and Spain at least 50 trans women who did a sample like this from the comfort of their own home They did like a small survey about like which type of surgery they had how long ago their post operative care strategies and so on To generate this data set and that's again a topic that no one had cared to do so far Including me and that's despite being a biologist. I had never even thought about it like to be very real on that as well So what we actually then did is we found that interestingly There seems to be a quite stable microbiome in the trans woman that we sampled which now It's actually a data set that can be used to say this is how the currently healthy microbiome It's the best knowledge we have and this was actually supported by the larger LGBTQ plus STEM community in the UK that had this analyzed these data The second example I bring is a project that's currently ongoing at the Turing Institute and it's the project called art spaces and Art spaces as the project that comes on the background of saying that 90% of autistic people process sensory information differently from non-autistic people and that's again something where there has been very little Research on despite the community being quite interested So a few years ago in the UK the autistic a foundation did a survey amongst autistic people and parents of autistic people to see which research Topics they would like to see research on amongst the top ten lists where which Environments and supports are the most appropriate in terms of achieving the best life outcomes and how consensory processing in autism you better understood But if we look at the research in reality again, it's quite similar to what I told you for the transgender health topic Only 27% of research topics are actually the ones that are the top ten of the community in 73% Other ones that academic researchers find interesting It's a heavily politically loaded thing as well because a lot of these 73% is like the molecular origins in the genetics of Of autism and like if you can imagine autistic people are not super fond of this type of research Which connotates some like genocidal eugenics idea of we try to get rid of autistic people So what we try to do is do a project where we co-design an online citizen science project Together with autistic people and the idea was to have an online platform that allows the collection of qualitative data on the sensory processing experiences as autistic people encounter in their day-to-day lives and And this was like the initial idea and then we actually started in a very heavy Focused co-creation session with autistic people over now. I think nearly three years But we did initially scoping sessions focus groups regular co-working sessions and actually have everything open source Of course, so we work together with the community Continuously and just based on our initial idea. There was a lot of contentious issues Whether it was just about collecting these data whether it should be limited on the processing and also whether parents and caretakers should be allowed to collect this data or not and The first thing that we actually need to iterate on to change was like the idea of what we would be doing Because autistic people don't just want to collect data about their experiences But also their coping strategies and here's a real example of a story or experience that an autistic person wrote up about The issues they encounter when having to work and like an open office without desking, which is really terrible It's super loud. You don't have like the used environment as you need to find a new place every day. It's really stressful But they also said here are my own ideas and tips of like how to deal with that And at least make it a bit better if you have to work in such an environment Then you can come in very early to make sure to always get your own desk that your own desk or your regular Desk at least it's often maybe far away from too bright lights Maybe get noise-canceling headphones and things like this The second thing was that of course if it's about not only collecting this but sharing these strategies with others It opens a whole host of other questions, which is we now need to somehow Get think about do people are they allowed to share or like feedback on those experiences? Am I allowed to comment on your experience and if so what are the moderation approaches to this? Like should people be allowed to just write anything because we want people to share potentially distressing experiences And when should we moderate this? So the first thing we decided actually was together with the community the community said we want to share these experiences and make them publicly available But please don't reply to my experience. It's the act of sharing that actually helps us Much more and learning from those than replying to it like we already get a lot of abuse online And we don't need this here. So sharing is okay, but no replying and then the question was how to moderate it at one So we decided actually that we would do pre-publication Moderation which again is quite similar dissimilar from any other online platform You might be used to so the community said okay No direct feedback on my experiences and everything needs to be reviewed before it goes public It's more like academic publishing than Facebook or Twitter, which again, it's a quite different approach to what you might be used to So now every experience that someone wants to share an autistic moderator needs to look over and see whether that's in accordance with the code of conduct or not And this code of conduct quite unlike most other things actually because people want to share their things has different stages It's not just it's either completely bent or it's okay Of course there are things which are not allowed and which will just be bent and there are things which are always okay And they are just shared as they are But the community said given that we want to share potentially distressing experiences which might be triggering to others There will be the option to say these things are triggering the moderator flexed them as such and they get Officially approved trigger warnings which people have to accept and then be able to see it if you've been on mustard on you've seen That people can self-tech these things, but again, it's something that most social media websites don't support and Then basically the way it works is like people as a moderator can actually take like they see the experience They are people's coping strategies and they get to flag if people forgot to flag or didn't think about flagging it They can flag it and then it's made publicly accessible and people can see it So ultimately thanks to this community feedback We basically fulfill without space of three goals with really sharing people's stories and their adaptive techniques with others Educating your typical people. So basically if you are not autistic in the room You can go and read these stories and learn from them and also to advice organizations on how they can help to make spaces For example, if you are designing an office space, maybe think about what people experience and how you can avoid these things So basically to sum it up really, I think these participatory approaches are really mutually beneficial and help us to address real world Needs and research questions, which is quite unlike many other academic research, which is very focused on the ivory tower and academic progress It also identifies challenges and potential solutions early on for example like in the odd species example None of the research team had thought about whether we should include the option for people to make it publicly accessible and adding Their coping strategies. It was the community that said this would make it a lot more attractive for us to both share the experiences and actually help us and lastly it Also allows to appropriate Co-design the appropriate data collection methods for example Initially the question was how in all spaces how to collect these experiences and whether it's maybe too open-ended in the community So you need to have like a more focused prompt for us Otherwise we cannot collect this data because it's really hard for us as autistic people or many autistic people find it hard to answer Too open-ended questions. So you need to be in a way more leading which from a research perspective you might not have wanted So some best practices for what you might want to think about I think it's ideal to involve community partners of the people affected by your research as early on as possible I think like you can otherwise lose a lot of time on doing things Which ultimately you cannot implement in the real world as your community doesn't want or need it And if you are working in industry and you have any experience with usability research and user design This might be odd news to you if you an academic researcher, you might never have thought about this Then the other thing is that also participation isn't a one-off. It's really it takes time when you need to build these relationships and Ideally you do this in a very deliberate manner and not later on even if later on is better than ever But ideally you do this over time when you can continue to engage with the community with outspaces For example, we do monthly community sessions where we meet with the whole community online to tell about what the research team has been doing Request feedback, but also meet with smaller groups for example on the moderation approach That was shaped by two autistic people quite heavily that met with us every week because they said we want to be experts on Moderation we have ideas and then be presented back to the larger audience and last but not least You might have seen and if you've ever seen me talk about this You might have seen Anstein's letter of participation enough like whether participation is a meaningful Participation where people have some actual degree of power or whether it's pure tokenism or non participation Where you try to pretend to involve people but don't really give too many power And I think often we see in research that there's like this public participation and involvement which like unfortunately stays here You make in the end invite people but that's You make it publicly accessible in a one-way communication, but this is really about going beyond this and With that, I think my time is about to be up. So thank you all and also thanks to all of these community members that made these projects happen And I'm happy to take any questions Thank you so much for that. We have five minutes for questions Who would like to start the questions? I could talk to Varshan in London too, but I'm gonna ask this question What what do you think? Participatory research looks like in research where they have not designed for it yet. Can there can that be retrofitted? I Mean, it's it's a lot harder to retrofit it But I think like the best time to start participation was yesterday the second best time is now in a sense That yes, you can always go out to the communities and ask for feedback I think the problem is too you want to really avoid like these things You don't want it to be manipulative and basically say this is what we done And now please let's just like give your thumbs up on this You need to be prepared for communities to say no And I think it's it's really really hard to to accept this and especially in autism research I know that there have been examples where like big consortia in the UK have like started their whole design process then released their study and said we are going ahead now and the community rightfully so just like didn't have any of it and they needed to shut down the research projects and It's easy to then become very defensive and say oh, but like these mean autistic people They are talking shit about researchers which like has happened in that case But maybe they actually rightfully so said like this is research It's completely unethical and shouldn't be going ahead And I think as researcher you need to prepare me to be prepared for this to happen Except that you might need to change your research direction. I have a question How did you learn How to do a participatory community research like because I imagine it takes some training how Where can others find these resources? I mean there's I think different ways of getting there There is like in the social sciences and some disciplines a rich tradition of doing participatory research participatory action research and things like this Which most of us don't have including me I think to me I came from this from a background of how does do open source communities work in a sense I started out coming from an open source angle and approached it quite similar to say okay I work with a lot of volunteer contributors in open source projects. Why would I be treating my participants? My participants in research any other way than I would treat the people that I want to work with as peers in open source So I think if you have experience in working in open communities But then treat your research participants differently I think it's just a very slight change of mindset for you to get there to at least start this journey to work with Participants in your research on a more equitable way Thank you. That makes a lot of sense. I can resonate with that My questions may be a bit philosophical in a way. How do you deal with? Conflicts within the community when it comes to like the needs like if you have one person That is engaged in your project that is we definitely need things to be moderated before they're posted and then someone else saying No, this is like the complete opposite. How do you deal with that? Is it just voting? I? I think no, it's not just voting and it's This has happened I think like one big content just issue for which I didn't have time was what I briefly hinted at whether like Non-autistic people should be able to write experiences for their children or like people they take care of And that's highly contentious as like autistic people experience a lot that non-autistic people talk for them But at the same time there is like a lot of parents in these communities that say but my child or like my Person that I'm in charge of is non-verbal Non-verbal they cannot speak for themselves. So I need to do it or no one will do it and I think it takes a lot of negotiation within the communities and Maybe not necessarily voting but figuring out what the priority would be and in this case It was like okay There's plenty of spaces where parents can talk about their autistic children already So maybe we don't need to be the same place Even if like there were maybe more parents in these communities than we had autistic people But to make a decision to say maybe you can go elsewhere It's not ideal, but at least you need to make decisions and be transparent about it I think there's ultimately no way to always make everyone happy but to like clearly state how you ended up these decisions and why you made them and Even if it alienates parts of the community, it's the best you can do ultimately Thank you so much for that. Let's get another round of applause