Games as Community Driven Care: A Case Study of Co-design for Aphasia

[Music] hello i am catherine hymes a game designer and computational linguist also i am allergic to summer so fingers crossed i don't sneeze uh i'm here to talk about the potential for games as a form of community driven care specifically exploring the topic through a collaboration and co-design project in making games both with and for people with aphasia which is an impairment of language this talk is being given amidst the pandemic and right now it feels inevitable to be asking ourselves how we might use our energy and skills whatever they are at gdc specifically as game designers to contribute to important human centered questions the hope is that this talk is helpful in showing one way to apply game design through a deep community collaboration

in service of the public good there is a well-established movement for games that are designed with a goal that is different than entertainment sometimes these are called serious games or games with a purpose and that isn't to trivialize fun or self-expression in games in fact pretty critical for most any game to be interesting rather these games are designed to accomplish something specific outside of fun in the domain of therapy one motivating question may be how might the context of play positively affect patients or facilitate community support or help people to make a change in their personal health or behavior there is a wide world of game development looking to design games for applications and health for care for rehab and the idea of playful medicine or playful therapy is here and happening

right now a couple of examples for you last june the fda approved the first ever digital therapeutic video game that was clinically shown to improve attention spanning kids with adhd stroke patients can be prescribed game based therapy to recover movement and motor function at home this is really hard to do these games have to clear all of the hurdles of proving medical efficacy while still being fun but they open up a world of experience experience-based therapy through games this talk will focus on the project aphasia games for health which was a collaboration over the last year where aphasia community members medical professionals and game designers came together to make games that explore the potential for play as a community driven form of care and by that i mean playable

at home in support groups out in the wide world without the need for a specialist to run it here uh i'll focus on the co-design process itself uh it's gonna be a fly overview uh of what it is to work across different backgrounds expertise and communication needs to produce games i am a game designer and linguist by trade and only one member of this team but you'll get to see more of our co-design group later on first some brief background aphasia is a language disorder caused by stroke or other brain injury that affects a person's ability to communicate this is an impairment of language there's no one single experience of aphasia someone with aphasia may have difficulty in speaking understanding reading or writing but living with aphasia can have a big impact on many parts of social and professional life which just gets in the

way of expressing oneself and connecting with others across the us there are over 2 million people living with chronic aphasia people with aphasia often report that they don't have enough health care access for meaningful treatment and when they do receive language rehab it is typically limited in scope so think 10 hours of speech language services in the first year after a stroke and then a really high drop off beyond that but rehab helps there is strong evidence that speech and language therapy can improve communication well into the later phases of recovery so given all this there's growing interest in the aphasia community to find new ways to receive community-driven therapy that's done at home without a clinician for a long-term language recovery why consider games for this reasonable

question games designed for aphasia rehabilitation have some exciting potential here first we have prior evidence that games can be built to include therapeutic rehabilitation principles but also be played and run at home by non-professionals they can be made to be flexible to the needs of different players flexible in format made available in person or online which is important for many folks who live outside of major cities or with limited transportation options compared to other treatments games can be scoped to be significantly cheaper with a single purchase allowing for long-term play also games can be social while doing all of this and by being fun they can be built to help people connect and keep engagement up so taken all together this is a

compelling case to explore aphasia games for health will evans a professor and speech language pathologist out of the university of pittsburgh spearheaded the effort to assemble a co-design group to make card-based games playable in person and online that can incorporate mechanics that are helpful for aphasia treatment now many folks in the aphasia community are already playing all sorts of games sometimes they're used in modified forms as exercises and aphasia support groups but the question here was to ask can we add to this by designing games intentionally from the ground up that meet some of the needs of the asia community to make games like this we wanted to bring together different kinds of expertise uh in particular insight about the lived experience of aphasia that can come from aphasia

community members uh we needed a way to evaluate the therapeutic foundation of the game as it's being developed and iterated on with knowledge from speech language pathologists and we also wanted to build scalable playful systems around all of these ideas that can be woven into a game as contributed by professional game designers so together we formed a single co-design team that collaborated to produce new games for health for the aphasia community and these partnerships included aphasia community members from arc that's aphasia recovery connection which is a nationwide support group of nine thousand plus people speech language pathologists from the language rehab and cognition group at the university of pittsburgh and independent game designers from both industry and academia each game featured a lead designer and

then was made in partnership with the whole team so before starting out we needed to draft a set of design principles that would ground what we make uh simply outlining what an aphasia game for health would aim to do is a challenge in and of itself based on deep dives into research literature and interviews with members of aphasia recovery connection here are some elements that we wanted each of the games to incorporate first we wanted games to have a therapeutic foundation by using one or more of these behavioral rehab activities that are backed by evidence to treat aphasia they should have a way to adjust difficulty that means that people with really different profiles of aphasia can play the game and also that a single individual can keep on playing as their own experience changes over time

we wanted each game to allow for performance feedback during play which is a real standard component of therapy that you can mechanize or support through the structure of a game we'd like these games to be playable and replayable so that they can be a part of long-term therapy and of course these games needed to be accessible they have to target the common scenarios around social access and community constraints how many people are playing who you are playing with as examples all of this together it's a tall order and it's important not to over promise what any one game can do but knowing what to strive for is a first step there are many more steps to actually show that a game is therapeutic or that it's broadly accessible especially across the community with really different needs and experiences so in the next few slides i'll put a spotlight on some of the ways that we structured co-design

to both be accessible and functional across really different kinds of expertise so for uh creative collaboration bringing all of this different experience together it has the potential to be utter chaos we needed to spend serious time and energy up front figuring out how we were going to work together though this collaboration has lasted more than a year the heart of design happened over summer so over the course of three months we held a series of workshops and interview sessions uh that involved our whole group of co-designers workshops were done remotely over video conference and were used to do brainstorming game design pitching uh structured play testing feedback and of course just general hangouts each workshop followed a similar format an overview of a game id in progress was presented the basic explanation of the rules then game designers would model an

example turn of gameplay and then community members with aphasia would be invited to play tests and comments give suggestions after playtesting aphasia community members would share their immediate thoughts feedback from whether or not the game was fun what was simple what was challenging and then together with feedback from our speech language pathologist the designer would iterate and present a revision at the next workshop this was done through three cycles of design idea workshop presentation and revision until finally a play tested prototype was made during co-design one of the first things we had to think about was how to make this accessible for our team members with aphasia we employed a whole range of adaptive techniques to help with communication in our workshops many of these come from standard fare that um online invasion support groups

are already using today we were one doing video conferencing and that forced by the pandemic but that ended up being helpful and we used different modes of communication at the same time to help with participation slowed speech and writing together were especially effective someone would type keywords from speech into a chat window to help cue a conversation so everyone could follow along people could share pictures and visual aids to make explanations clearer even at the earliest stages of game design and timing for meetings was needed in order to not cause mental fatigue afterwards recordings were shared with everyone to allow people to review a particular workshop if they wanted and along the way we had regular active conversation with our team members with aphasia to ask what else they mean

cross training was another one we recruited game designers who had really strong design work uh and an interest in this language related play some of these designers had experience with aphasia through their family but we know that there was a lot more to know uh even while working within a co-design group so prior to starting any kind of active development game designers followed a month-long preparation program of sorts done part-time they were given lectures on aphasia from the rest of the court team they attended separate online conversation groups led by the aphasia recovery connection typically involving around 20 people with a wide range of aphasia profiles the idea here was that this allows for exposure to a larger range of people who might benefit from the designs we would later make and then before starting with the core team designers were then asked to attend

an aphasia group where people with aphasia play existing games together like bingo or trivia and some of which are regularly led by some of our team members so here's one tangible example of how we tried to make the creative development across expertise actually work game designers were given a design brief with details on project goals but also existing therapeutic activities that might be mechanized in future design choices we wanted games to feature one or more evidence-backed behavioral rehab activities the majority of activities are all around providing contexts that allow people to practice speaking processing or combining elements of language together this wasn't an exhaustive list by any means but it was some important tools as considered by our speech language pathologist

so after that brief window into co-design um i'll give you a high-level peek into the game prototypes that we made and point out at least one way that uh they followed our game design principles first up the ministers cats led by game designer meg baker this is an evolution of a 19th century further game it's a memory letter game for two to six players where players will tell small stories about a minister's cat featuring a word that matches a pre-assigned letter so it's meant to be a storytelling game using repeated phrases along with nouns provided by the player every sentence is prompted by this deck of themed cards that come with the base sentence so think the minister's cat eats the minister's cat wares then players take turns creating sentences

and rounds and flesh out the story of their cats it was a big cat fever of the summer as you can tell for this game i'll point out an example mechanic that's based on behavioral rehab principles so one standard rehab technique is to modify the difficulty for a task by queuing that means offering clues perhaps around meaning it's a type of bird or sound starts with a p something like this um and this uh led to a mechanic in this game where players are asked to recall words with cueing that are based on sounds constrained by some topic for example you know it has to do with food and then start to be audition is a memory and improv game led by game designer cleo yunsu davis players take on the role of an actor who

is auditioning for a movie and the acting coaches who are trying to help them but the problem is that neither the actor nor the coaches have memorized the script so the actor has to do their best to improvise a monologue that includes the keywords from the script while these coaches are helping them by prompting those words another example of our design principles and action is that this game incorporates a mechanic based on adaptive levels of difficulty in particular it mechanizes different player roles of both actor and coach that allow for different kinds of challenge around what kind of pressure you want to be under and how you're prompted to see things on the spot do you see what i see led by game designer tim hutchings it is a video chat game that combines storytelling 20 questions and

environment interaction at a distance great for play over zoom players will join this video chat from a room in their home and then one player is the chooser and selects an item in the background of another player's video chat window the other players will ask simple yes no questions in order to try and guess what's been selected and the person whose object is chosen then tells everyone something special about it it really gives nice alibi to share something personal with the other players variations also layer on this game in terms of new rules to increase the difficulty like you might have an off-limits danger item an example mechanic based on the design goals of long-term engagement is that every time you play it's different based on the background content which players can modify or replace with even virtual backgrounds so next up i want to actually show you a

clip of this game being played by a subset of our co-design team this includes trish d and jill some of our team members with aphasia carol who's the co-founder of aphasia recovery connection and will our speech language pathologist great all right who wants to be the chooser i will awesome trish is the chooser uh remember now we are guessers uh and we can ask yes or no questions like is it green or is it round but we can't ask whose background is it behind let's get started

um is it on a table no is it a square yes is it on a wall yes is it a mirror [Laughter] and now uh since jill guest and it's behind jill jill can tell us the story of the mirror well i like mirrors because my grandson is 17 months old and he loves to look at himself of course

his job team awesome let's play another round okay who wants to be the chooser d all right he's the chooser i know what i i'm looking i i i have chosen my thing so we can start asking questions okay is it big no [Laughter] is it a squam no no is it bigger than a chair no can you drink out of it no

um [Music] really is it white uh i think so is it round no is it on a table uh no is it on a wall no oh

maybe is it more than one color no is it wait a minute counter counter yes is it my ipad left yes yes i didn't know if what it was white or gray i couldn't see if it was white or gray so yeah that

was okay the way you said it we knew that it was close to whites i um i was apple and this [Music] the my colleagues this is me what wait wait wait i have to make it bigger wow which one are you of the six here wow oh so is it like a picture frame yeah oh yeah that's awesome very cool wow

i love the personal stories that people can share in that game uh and so hopefully that gives you a taste of some of our game prototypes here i will share a brief reflection on co-design first off for collaborative co-design there is a real lift with cross training for everyone some of this we anticipated ahead of time for example for our game designers getting more formal background on aphasia uh and others we had to incorporate along the way uh we found that both our speech language pathologists and team members with aphasia could benefit from more background on the game design process itself what to expect how to give clear actionable feedback and all of that we ended up holding a separate accessible training session for all non-professional game designers which helps with future workshops

another takeaway was around the impact of small decisions from a design perspective having big implications for the ultimate therapeutic status of a particular game uh we had a speech-language pathologist who could help actively guide in making therapeutically motivated choices but we found we really needed uh even more detailed back and forth for example in the audition game where a player improvises lines based on card prompts the choice of what counts as a line has real stakes for who can play in the actor role and the choice also changes what skills and abilities are being targeted for improvement and lastly we learned some things about game design specific adaptations to make the process more accessible we already talked about the general adaptations we used to support our team members with aphasia

we also found that there were specific activities in game design that needed their own attention to make sure everyone could fully participate a lot of this was around play testing games at various stages of development two most useful techniques were the liberal use of visual aids and example turn demonstrations even for ideas that were in really early stages or in flux so some of the suggestions that we got from our team members with aphasia also directly shaped the rule explanations that we drafted for our prototypes results from this effort we have three free publicly available game prototypes that you can check out along with illustrated game instructions we have a website with more details on where people can sign up for play testing or to follow along we also have some great game

recommendations offered as videos by our team members with asia based on what they like to play and some of them have also started designing their own games outside of this collaboration lastly you can also find some training materials and more background info we're proud of this work but it's a start we plan to do more play testing with aphasia support groups to iterate on these games uh though these games are based on therapeutic ideas actually proving therapeutic effectiveness is a much higher bar and they need to be evaluated through rigorous clinical trials research in order to meet it we're looking into funding sources to print and distribute these games beyond the free downloads that are available today and we're thinking of ways to help out gaming communities that exist already in aphasia support groups

takeaways for you this is a brief window into one project around games for health that was made through collaborative co-design so more generally there is a growing interest and real momentum in many areas that are looking to gain design as a potential form of community driven care and with the right collaboration you as a gaming designer can use your skills to contribute if you'd like to learn more about this particular project check out aphasiagamesforhealth.com big shout out to the many people involved along the way thanks and see you later