Signed Electronically Personal Medical History Made Easy

Signed electronically personal medical history

Thanks thanks Chris good afternoon everybody let me get my slides started here okay i'll be presenting of course on our project but before doing that I wanted to start with a little background on people with disabilities and their healthcare why this is important and a little review of accessibility and assistive technology but first a few notes on language some people might be uncomfortable talking to or about people with disabilities there's one thing that can help what's called the person first rule so we say things like people who are blind or women who is deaf not blind people or a deaf woman it's a very easy habit to develop in addition also be using the term person will help micro to PHR they're actually strict definitions for EMR EHR and PHR but we never follow them so i'll be using PHR so much generically to describe any patient facing system with the primary function of providing some access to the summer all other chart as well as other features and functionality and any health IT project a good place to start is to try and find descriptive data on both your user and patient population in this case they're one of the same people with disabilities so I have just a tiny extract of data from the 2010 report from the US Census Bureau by their measures 56.7 million or 18 point seven percent of Americans have some type of disability 38 million or about 12 and a percent 12 and a half percent a severe disability they break this out by age showing that higher age groups do have a higher percentage of people disabilities in fact over 19 million or over 65 but the majority of working age and almost 5 million our children under the age of 15 they break out the state in many different ways types of disabilities vary within each leave include economic data demonstrating that people of working age with disabilities encounter economic disparities higher rates of poverty and unemployment well since the topic is health care and people disabilities there's another resource we can use to learn more about this and why it's so important the Surgeon General's call to action to improve the health and wellness of persons with disabilities is one of about 12 call to actions that they published each addressing an important issue in public health the authors make it very clear that they want us to understand that people with disabilities can live a full life but the key is health and wellness however they go on to cite numerous study after study demonstrating on people with disabilities face dis battery disparities with almost every aspect of help in the healthcare system access is defined in many ways and is a problem they may have higher and/or unique risk factors all of this leads to poor outcomes and higher costs of course the individual and society some estimating and hundreds of billions of dollars well since that time all that report was published in 2005 there's been a lot of tension on healthcare technology of course especially patient-centered technology that steams to provide the promise that it will engage patients and improve care in every possible way well if and when that promise is achieved it has to address people with disabilities however beyond the gargantuan task of developing systems that address meaningful issues and measurable improvements in outcomes we have to do one more thing we have to make sure that people with disabilities can use this technology and by that we mean it has to be accessible excuse me there are many definitions for accessibility I think of it rather simply at two levels design and code at the design level accessibility and usability are almost interchangeable for example consider someone with a mild visual impairment or maybe a mile reading disability for them good layout but content proper use of font color size etc can go towards making it both accessible and usable or people with a more severe disability require an extra layer might say of technology either software and or hardware between them and whatever device or system they're interacting with this is referred to as assistive technology for assistive technology to work of course we still need good design but also to make sure our code follow certain methods and standards set the assistive technology can either in function with or interpret the information to the user well those a lot of resources and we know how to make technology fully accessible in addition there's many regulations and laws however on the track record needs a lot of improvement I couldn't find anything more recent that there was this comprehensive but in 2007 that you ended an audit of 100 if it's I'm indifferent consumer sectors only to 2% met accessibility standards well given that we have the knowledge and the resources yet continually fail the issue seems to be related to awareness and methods anyone who has worked in this field and accessibility has encountered a lot of people with different misconceptions about it they may feel that their users or customers are not people with disabilities think the census data counters that also marketing data and as well lawsuits so there are business incentives even so they may view accessibility as something that's very expensive and complicated they might feel it can impact usability or functionality and that's just because just like everything else usability requirements perhaps even meaningful use unless we address accessibility early in the development process the cost of addressing it later goes by orders of magnitude at the same time our solutions are less than optimal still other people might feel that accessibility can somehow impact innovation and that's really unfortunate because there's a really long rich history of innovation and assistive technology so with that I'm going to give a brief history of assistive technology used by different people and also the little focus on innovation many forms first I'm sorry in innovation one thing that seems well accepted is to look for early adopters when it comes to new forms of interactive technology people with disabilities are often so far ahead of us that they're the ultimate really adapter if if one person in technology could be given the title of genius some people might pick rakers well he's the current director of engineering for Google and he has a long history of invention and innovation way back in nineteen seventy-four when he wasn't busy inventing new types of music synthesizers and samplers invented three other types of technology the flatbed document scanner omni found character recognition which would convert that image file to text so he could process it and search it and also the first ever text to speech synthesizer or the talking machine or computer what's funny about this is he had no idea what to do all this until on an airplane sitting next to a man who was blind and told him how difficult was for him to acquire reading materials and Braille so he put it all together and invented the first reading machine that allowed people who are blind or visually impaired to scan any printed material books magazines and had the machines speak it to them and a little trivia Stevie Wonder was his first customer he also applied the same approach to help kids and adults with reading disabilities by adding a layer of display even the original scanned image highlighted and as it was being spoken well ten years later the personal computer really started to take off I think both Apple especially on Microsoft deserve credit for addressing accessibility very on early on and recognizing that was important for the technology to be accessible so you can try out today in your computers or even your mobile devices a whole variety of accessibility options and features directly in the operating system however they went beyond that and and created a sort of framework you might say for developers an application programming interface for accessibility allows developers of both standard technology and assistive technology to create accessible solutions without having to solve complex problems with the graphic user interface and the mouse interaction is perhaps the most challenging for people who are blind for decades they've used software called a screen reader it will interpret both input and machine output to synthesized speech that along with a lot of keyboard commands that have to be memorized that allows them to interact with the computer however despite its name it's really not reading the screen it's reading the code that generates that screen so for the desktop thanks to these this foundational work by both Microsoft and Apple this is largely solved but as a bigger problem of the web or again accessible coding standards need to be followed so if the structure of the page and are the elements within it are not properly coded that can render the site very confusing to completely incomprehensible for people with physical disabilities they may not be able to use a standard keyboard or mouse there's a whole array of alternative input devices for the mouse there's all types of track trackball or joystick type devices some may not even be able to use any track or mouse type device so we need to provide keyboard only access as far as keyboards there's so many different types large key colors membrane keyboards ergonomic keyboards for many different uses and situations up to including people who type with a mouth stick for some people these alternate input devices might be enough others will require a distant additional assistive technology software to improve speed efficiency and accuracy there's a lot of software and even the operating systems can help support this I have a screenshot of a very old program that interacts both is standard as well as alternative input devices called co-writer came up with the Mac perhaps I think in 1985 maybe that you need to send the latest does a lot of things too much to describe here one thing it does is pretty interesting is it can display an on-screen keyboard and that can reflect what's being typed on any keyboard or can be accessed on the screen via touch screen people with disabilities of using touch screens for decades it'll also use word prediction to generate a list of words thereby improving the users efficiency I hope this sounds familiar in software this development as well as user interface design there's something known as design patterns these are solutions to some problem that can be reused and this represents the design pattern that is fundamental to our typing on our mobile devices yet has been used by people with disabilities for almost 30 years another way to think about this is when it comes to typing on a little piece of glass we're all essentially disabled and require assistive technology for people with even the most severe disabilities are further options both software and hardware this is referred to as the single switch and scanning if you can move anything in your body they can adapt or create some switch that you can use it might be some large button you hit with your armor hand side of your face it couldn't be something new trigger by blinking or sipping or puffing on a tube in fact a lot of people control their wheelchairs that way switches can be applied to appliances even toys so kids can have fun while just like every other kid however interacting with a computer it's more complicated so we have to end scanning in this case scanning refers to the software or other software visually or even with audio highlighting selections on a screen could be keys on the on-screen keyboard links on a website or menus on some application as it cycles through these options when the desired option is highlighted the user closes their switch by whatever method again it then they'll then move on to the next choice this seems kind of cumbersome and difficult it can be however it can be further augmented with a lot of intelligence and automation it allows people with even the most severe disability to do anything with a computer as an example I thought I'd referenced the most famous person with a disability in the world if not the universe professor Stephen Hawking the astrophysicist the great thing about assistive technology is first of all there's no one-size-fits-all solution for anybody and we can configure again hardware and software modify it in different ways to meet anyone's needs so I'm sure we're all familiar with his his books and computerized speech how does he actually use his computer he has a special computer mounted on his essentially an ordinary computer for the most part mounted on his wheelchair and then he uses a program similar to co-writer called easy keys he's a Windows guy that has an on-screen keyboard scanning word prediction and text-to-speech however where's his switch well if you look and the lower right side of this picture it's hard to see there's a little bump on the lower right side of his eyeglass that's actually a little infrared switch and he triggers by just sort of twitching or moving his cheek so there you go that's how Stephen Hawking uses his computer well as much more I could talk about too much here but I will provide some resources at the end of the talk or you can always contact me or some other people in project any time though because so much of our innovative technology has to do with how we interact with technology it's really fun and interesting to think about what's happening in assistive technology right now that might lead to something we're all using sometime in the future okay now about our project excuse me right the project is a collaboration of three different organizations on the project leader is the wgbh National Center for accessible media beyond all their wonderful public television and radio shows frontline Nova Car Talk WGBH has been a pioneer in inventing assistive media technology the first ever caption TV show ever was Julia Child in 1972 on WGBH they went on to develop more sophisticated forms of closed captioning as well as descriptive video for people who are blind like your computer you can go home and try out these features or options on your cable box em cam consult a lot of large media and technology companies they also engage with policy makers and they recognized early on that we needed to bring attention with all the attention on health IT to accessibility as well as usability and everything else the second partner is right here in Philadelphia inglis house they've been managing the care of people with severe physical disabilities for over 150 years they have a 300 unit residential facility and they also managed to care about a thousand people who live within the community they're very committed to finding health technology that allows their residents and consumers to be fully engaged in their care and they contributed the project beyond just their expertise and as a source of subjects but also via their assistive technology computing center where they have maybe 20 25 computer stations with every type of assistive technology you can think of and experts who help the residents and consumers use this technology to do anything that is they want to do they set up some assistive technology usability testing stations we use in the project then of course there's a chap might ND bhi myself my boss dr. robert graham are we have experience developing decision support for not just clinicians but patients and families also want to acknowledge our developer contractor Jason wipro from usable development he has a master's in HCI a web developer and some expo accessibility expertise the grant was awarded by the Department of Education National Institute on disability and rehabilitation research they call this a field initiated development grant essentially that's a demonstration project demonstrated some process or method of benefit to people with the most severe disabilities so what are we demonstrating at the highest level we want to simply contribute awareness and also resources and methods to anyone at health IT developers vendors entrepreneurs and policymakers the vehicle for our demonstration is to design a PHR using a comprehensive user-centered methodology and to share all our results of course we can't build a real PHR so the final product was a set of interactive prototypes suitable for usability testing by any person with any disability as I mentioned before so often software is developed without thinking about people's disabilities and it leads to problems later on we figured why not take the exact opposite approach and design our system with and for nothing but people with all types of disabilities over 200 participated in different ways and as a bonus beyond demonstrating usable and accessible PHR designs we feel this can also lead because of all the disparities and issues and complex hair care requirements by people disabilities this can lead to a more functional and even innovative PHR that will not only adjust their needs but everybody that's nothing new again back to the 70s that amazing decade this the concept of universal design if we brought in our design perspective to include people to spell these the result our designs that not only just people with disabilities but are more elegant or versatile for everyone this was initially applied to elements in architecture the curb cut is probably the most cited example I may have given examples of electronic curb cuts earlier somewhat related to this is highly related in this I should say I'm sorry is another idea or philosophy designing for the extreme user if we think of our user population as a normal curve we might be tempted to think that we should be designing for people in the center that curve the average or typical user when others have demonstrated a better approach and more innovative approach is to design for people on the tail into that curve the extreme user in regarding disability is a people or accessibility this has been demonstrated with a lot of commercial and innovative success and believe it or not kitchen devices ergonomic kitchen devices the most famous / design firm and innovative design firm in the world i do applies this approach though to all types of different in extreme users and you think about it a lot of our work in dbh I and perhaps even over chopped it's the same approach by developing solutions for the most complex patients and their care providers we not only address develop systems that address their care needs but that can be applied to everybody ok on to methods and results the first thing we did is we did not code anything instead we spend a lot of time via multiple methods studying our user population let me go through that the first thing we did where a set was a set of semi-structured interviews with 16 people with different disabilities and the interviews were based on three open-ended questions first question was to have them described has their goal but it meant to be living independently their responses echoed a lot of what we read in the surgeon general's report what you can read in the soup the next question was to tell us the connection between health and their independence and here they clearly echoed the surgeon general's report health was the most critical important factor to not only achieving but maintaining independence any setback or delaying care can lead to jeopardizing all the work they put towards living independently the third question was to have them described to us ideas scenarios from their own care on how they could use information communication or technology to better manage their care and this for me was really the most amazing part of the entire project because of their again being extreme users we might say the healthcare system and all the different issues and barriers they provided not only super detailed the very sophisticated scenarios and ideas many representing some of the most important issues in health informatics so we compiled their feedback into a set of 22 high-level use cases however each use case can be sort of expanded if you apply what I'm calling I just made this up requirements attributes that are shared across all the different scenarios and came from our subjects for example information access they want access to the complete record and they want the X be shared with everybody in their care team in every possible situation and scenario and also in every device in effect they're describing interoperability but with a patient-centered focus samode more detail than we're used to thinking about control they don't want to just access their chart they wanted to be part of updating it and even correcting it we do a pretty poor job of collecting and keeping up-to-date on patient histories they want to help manage this questions really don't have time communication far more sophisticated forms of communication now I between them and the providers but between their providers we're talking about care coordination and other people in their care team education there's plenty of stuff on the web however a lot of it is in excess isn't accessible nor can always be trusted they want trusted an accessible content integrated in many ways directly with their PHR and they suggested ideas similar to the info button or context based education or even information prescriptions insurance sometimes the most difficult part of help part of healthcare is all the red tape if we can't streamline these processes they want these systems to help manage all this pre certifications referrals approvals etc in addition because of their often serious limitations on income or benefits they want to be fully engaged and have tools to help them achieve the best possible care at the lowest cost i also want to help in managing equipment and supplies and other things related to their care so again if you sort of inherit these attributes to any one of our 22 use cases it provides requirements that far exceed the capabilities of any single PHR available today I've looked at maybe 40 so I can say that with some confidence so for example managing medications access to both past and present medications then the ability to correct or add or update those medications including the addition of supplements or over-the-counter medicines they might be taking more sophisticated communication around their medications tracking progress meant lab tests that might be required monitoring side effects of course accessible education education materials for patients how to take this drug what they might be looking for or to expect also help what is this drug costs are there other lower cost alternatives I can explore with my provider so the next thing we wanted to do was validate and prioritize the 22 use cases with a larger sample of people disabilities so we put together a web survey and the main purpose of the survey was to have our subjects rate the 22 use cases in two ways first how important is this to you in your care second what is your current level of satisfaction in managing this particular issue we also included a lot of information on their disability using technology all that to be able to run a website also we had to make the survey accessible not as easy as it sounds if one vendor relatable leads in this and surveygizmo I hate to say it but a commonly available research tool is not accessible for surveys 150 people completed the survey we got a lot of compliments and how accessible ones in blue are the ratings of importance the percentage of participants who rated as the use case is important and sorted in that order the ranges from 98 to seventy four percent by contrast in orange are their ratings in their current level of satisfaction only three topics score just about fifty percent satisfied the rest were much lower there's a few ways you might interpret this one is that it does reflect some of the information from the Surgeon General report in terms of our requirements now we pretty much knew that we could address anything that was important and needed room for head room for improvement the next thing we wanted to do was assess the current state of p hrs for accessibility usability and functionality we were a little naive at the beginning the project we thought vendors might supply us with the test system so we can do very detailed baseline usability testing they all those that responded politely declined I think we can understand understand that so ever how are we going to do something so we even looked at some systems from our own care or those available online so we looked at three systems hospital patient portal patient portal connected to a hospital EMR a patient portal collected to an ambulatory EMR and a consumer a web-based PHR so how do they do well accessibility was reviewed by the WG Beach experts they do this all the time for very large companies using both automated tools and manual review the hospital PHR only met six of the 12 accessibility standard categories the ambulatory and consumer pay chart met only two in terms of usability without our objective usability testing methods we applied pretty well established subjective methods heuristics and cognitive arc through in this case the hospital PHR had the lowest level usability the other two had problems as well problems relays seemed to Center on navigation schemes that ignored or did not apply the most basic techniques and information architecture so navigation was often very confusing and consistent unbalanced and redundant and if and when the systems had even more functionality that navigation system would you can produce even more problems there was other issues as well functionality we compiled a list of 43 or so different features or functions a PHR click your mind and that many do and then assess each of the systems the hospital PHR was the least functional only 12 under the 43 functions were available the amatory PHR was pretty sophisticated some some functionality even approaching that described by our subjects the consumer PHR was also highly functional but because it is in no practical way in Rapa bowl with a clinician system it has some limitations so overall each system did something somewhat well perfectly well and from looking at all these screens and going through every single task these systems provided for weeks it really became clear that if you could somehow put them together you'd have a very nice PHR and was dressed addressing the accessibility a little better and from that really the conclusion seems obvious in almost an epiphany in some ways but the real issue here is not our technology capabilities but simply a very systematic requirements process followed by user centered and accessibility methods in our development process so with a better understanding of our users in the current environment it was now time to go onto this design phase and we applied an approach vary so much what r a rose and spoke about here about two months ago very iterative design approach with lots of easy and disposable mock-ups tell them we met our objectives one issue here is that there are some common prototyping tools or markup tools used for this type of work so you can create actual simulations of interactive systems on the web however they produce code that is completely inaccessible I think this is really unfortunate since a lot of attention at accessibility is now coming from people who work and the user experience or design field and the very tool they're using can't support working with people with disabilities I I did write to the companies and I never heard back and perhaps I should write them again I was polite okay now on to our designs this is the homepage of our PHR it might seem kind of simple but there's actually a lot of thought and a lot of problems addressed here first if you look at many different ph RS or even PHR design contests most of them have a home page that looks kind of like a corporate dashboard and many of our early designs are markups apply that approach and it was immediately rejected by our subjects they said things like this isn't for me this is for my doctor I know who I am or this might be important in some way but it's certainly not the first thing I need instead since we're providing access to the complete personal health medical record along with these other tools and resources why not use all this space instead for simple clear navigation we added to that sort of a sitemap strategy organized by meaningful categories visual and accessible indicators because charts of aerodynamic indicating anything or any area of the chart that had something new or have been changed and also anything that required attention the same approach unlike the other navigators we saw and I've seen also adapts very well to what's called responsive design or your same system or site will automatically configure itself for display on even the smallest mobile phone we learned from next door who spoke here a few months ago that making your site responsive that the same coding methods could also go a long ways for making your site accessible good code is often excessive code patient education again our subjects wanted all types of accessible content directly integrated with their PHR to do that we built on some previous work from WGBH where they developed a k-12 education portal for kids and teachers along with organizing all their content by subject and grade level they applied something called media tagging or meditating so all the content was tagged but it's type of media allowing a person with disabilities or others to set media preferences so for example videos with captions text only audio etc that way whenever they might be assigned something or do any surgeon or filtering they're returned only content that they can access we feel this strategy could be applied to many existing systems some are capable right now of being connected not just one but multiple education resources because no more than likely no single source of content will have accessible content for everybody so that along with again this meta tag and strategy could not only help people disabilities be either prescribed or retrieve accessible content they can help everybody by addressing maybe perhaps preferences for age literacy language or even their preferred learning style as an example I have three different forms of Education here on the same topic asthma one is from MEDLINE plus the National Library of Medicine that's the top below that is kids health org now is that have content for kids and parents it has a very very much a Kerswell a feature where it will speak and highlight the text as it's being spoken by the computer that's available I think by company called weeds speak and planet to any website and all that a very unique resource we found called deaf health org that has videos of people signing all types of different content on diagnosis and medications and other issues care plans many people with severe physical disabilities reline a care plan a list of daily tasks they need to manage for their health given their independence this is maybe one-third of about an eight page care plan one of our subjects shared with us it's a very clinical document and/or it seems to be written primarily for those who approve the payment for this care plan what it does not do is provide a nice clear schedule of tasks and information to support those tests so we created that in the PHR this might again seem rather simple but I challenge you to find any PHR system that addresses care plans even beyond attaching a PDF our care plan beyond a simple list of tasks or scheduled tasks as information supporting each task with something we do almost every day personalized content linking to it just like we do in facebook or anything so for example the first task here of the day is to transfer the patient from the bed to the wheelchair using a Hoyer lift also we found a wikihow page and also a YouTube video demonstrating how to use a foil if the person might have a new home health care aide or a family member someone who needs this information later in the day they might have to do some exercises prescribed by their physical therapist or maybe maintain the range of motion instead of these little index cards that PT seem to copy and handout or photocopy why not make your own video exercise video that's exactly what I did I took out my phone and videoed one of the English physical therapists demonstrating some exercises attached it to my chart this could also be content attached by the provider it could be anything really laid out later in the day we have a connection to either forms or even an app to record and track fluid intake and output well given our universal design idea lots of people of care plans not just people with severe disabilities people with all types of chronic illnesses even someone who might be recovering from surgery or an injury they have instructions they want to follow so we applied the same design pattern to an asthma care plan for a child with asthma and it can be printed on a single page but online it has all types of again content that may be prescribed by chop-chop videos on what's asthma for both parents and kids demonstration how to use inhaler things like that equipment and supplies are very important to many people especially the people with physical disabilities from their grab bar in their shower to their thirty thousand dollar power wheelchair tracking and keeping information and all this equipment getting it repaired replaced is very cumbersome why not just have a simple database in the EMR I'm sorry PHR in addition it was very difficult to find any systems that addressed equipment beyond surgical implants this also provides a lot of assistance in transmitting information sometimes the most difficult part of getting this equipment for example you're again you're very skated wheelchair repaired first thing after you is get a prescription and a lot of red tape and things like that so that there's more more designs more scenarios in our website but we went on then to our summit of usability testing and we tested 16 people with different disabilities and I show your little table of describing their disabilities some in multiple disabilities as well as the assistive technology and there's quite a variety here used by different subjects of course some use no assistive technology sometimes I think is a little confusion about usability testing usability testing is really based on scenario-based having subjects attempt to perform tasks independently with the system and while doing some we collect both objective and subjective data objective metrics include task completion and usability hairs those are very standard we added accessibility errors as a metric and it was very easy to determine which was which subjective metrics are derived from Likert scale survey questions after each scenario and after the test rating the system on on various attributes so we can talk about our results task completion ideally you want to achieve a hundred percent and we did not however there's there's a bit behind that first three of our subjects of the 16 represented but all except one of those task failures each had a different disability two had a unique or severe disability one and a cognitive disability from a stroke the other had a severe physical disability plus of severe speech impairment and we were told that she tired very easily for both subjects and they completed only one scenario between the two it seemed to be a combination of failure to communicate with them or to have him understand the scenarios or even develop scenarios that they could relate to as a result they needed a lot of prompting whenever someone needs a prompting as they test you record that that usable the air and also the failure to complete the task with our completion the third subject who had issues was one of four people who are blind he used a screen reader she was the first person we tested she even though he tested our system with many different screen readers and browsers don't get me started on the browsers she had a different combination and an older version than we had tested with and there was a lot of problems in her screen reader really failing to integrate with some of the latest accessibility standards that are developers applied as a result the screen reader was repeating things and very verbose leading to a comment they'll probably never hear in this type of work it's too accessible so anyways we decided to address her issues in the mid test and later the other screen reader users to head no errors whatsoever 10 in a few minor errors another way of thinking about this is because or when you apply a very detailed user-centered method process especially with lots of formative or iterative design that when you test your system of course you're going to have some errors and however when you because of applying this approach those errors almost always suggest very clear and low-cost fixes the exact opposite occurs when you test the system is designed without any formative reusability methods in addition we also collect subjective results to understand sort of the whole picture our subjective results we're we're very high here in terms of satisfaction on usability accessibility and functionality so I always thrown a little trick question does the system need any improvements of course along with minor issues our subjects like all other subjects had endless ideas about how the system could be expanded in terms of functionality it's not very scientific of me but sometimes I think just beyond all this data we collect that user comments are sometimes the most interesting to reveal and so I have a few here this was from that woman who had the most trouble with her screen reader in our system maybe this will help you understand how bad it is for me their accessibility problems this but it is by the most accessible help 'let Health application I've ever tried from other subjects who didn't quite understand our project and may have been a little overwhelmed with usability testing they they felt that or thought maybe that the system was real or would be real would be available soon this led to something was kind of it was very depressing they would say this would be great this really helped me when will it be out when can I sign up so I had explained to them that our goal here was to collect not only data and information experiences and ideas from them and 200 other people in the project and share that information with people who develop or design these systems as well as those who write policies around it so that sooner rather than later they can have a system like this so given that we're now in our outreach or dissemination phase just we have a website and there's a link here health IT access.wgbh.org just yesterday Madeleine Rothberg of the project manager from WGBH presented to the federal interagency committee on disability research that went very well of course we also had a few conferences coming up and hopefully more one of the education aims here today is how do we include people disabilities and use building methods I've worked with hundreds of people both with and without disabilities and I think the good news is it's really not that hard only modern minor modifications and our methods and approach are acquired however there may be three topics that require special attention first recruitment how do we find people with disabilities what we were spoiled we had english as a partner we also needed to recruit other people who are blind or deaf so we found another independent living organization in Philadelphia Liberty resources that now I connected us with more subjects but American sign language interpreters hope you might pursue libraries universities maybe veterans organizations or even large employers online for our survey we used online communities at wgbh is quite familiar with however you want to be careful not to over survey these people next transportation it's often very difficult for people with different disabilities to find or have a reliable transportation in fact I had maybe eight or nine appointments canceled because of transportation failures it's much easier to just go to them in fact I went to many people's place of work even their homes in a few case cases in addition some may have very sophisticated assistive technology setups if you try to replicate this in your usability lab I can guarantee you almost that you will fail just go to them instead communication some amount of minor modifications first with american sign language is a lot of protocol with that to be careful to look at the person not the interpreter it's considered very rude so you can help arrange the room to avoid that people with severe speech impairments it's often helpful have someone of their care team or family who can help with communication and in usability testing we use something called the thinking a lot of protocol this is a really problems just kind of interesting with so many people talking to computers or computers talking back to them or people signing you have to modify that a little bit well there's there's other resources much more comprehensive than what I'm presenting here and there's three books I'd like to recommend first is just asked by Shawn lot and Henry she provides ideas and advice on including people with disabilities in every usability method you can think out next there was a web for everyone by Whitney Quisenberry and Sarah Horton they demonstrate the application of user experience methods and web designs to both include and address people with disabilities also digital outcast by cal smith again more methods but he also includes endless examples of how assistive technology has led to innovation okay my last night here I promised some chopped and other local resources if maybe you're interested in accessibility or assistive technology for your patients families are friends so first within chop we have a great resource for assistive technology for child patients that's a little rock foundations room that's run by Sandra Huey it's on the first floor the sea shore house she works with not only kids but their parents to identify prior and learn how to use assistive technology so kids can do anything kids want to do we also have some really neat unique experts who study and address the the often difficult transition to adulthood for children with disabilities and/or chronic illness I'm most familiar with semi trachtenberg who was recently recognized by our executive leadership for her work in this area and i discovered that Chris bona fide and semi had written a paper together sometime ago or more recently yeah on this on this very subject another resource on a chopped career path hiring young adults some many former child patients and that's run by Jamie dyani along with Allison Sims there may be other people who work there I'm sorry if I don't know them also with cimmie and so they have people working all over chop-chop and other hospitals are great places to work all kinds of jobs room for advancement etc finally to make chop more accessible to employees is the all abilities resource group this is a volunteer committee open to anyone to chop meat once a month it's run by Frank LaMacchia and if you're interested you can join our meetings whether you're disabled or not outside of chap in Philadelphia we have some great resources the temple Institute on disability is a really fantastic program they provide all types of research and services you have something that's very unique and much in line with the low on tradition of free libraries in Philadelphia the Pennsylvania initiative on assistive technology or P at a lending library a very expensive assistive technology so people can decide and figure out what assistive technology they actually need before making the purchase we also have a fill it fill the accessibility meet up 800 feet high and the Comcast building every month it's open mainly attended by developers and designers interested in making their technology accessible but it's open to everyone and also find out I see everyone looking at this all the time on our captioning service talk about extreme users if they could keep up with my rambling style then they could caption anybody that's archive reporting calm very reasonably priced and at the end of the talk you get a transcript that the good news in this case anyways that's the end of my talk and now maybe if you have any questions or discussions we can put things up