Effective Communication in Hospital Settings: Lessons Learned from Bone v. University of North Carolina Health Care System

This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

JAMIE STRAWBRIDGE:  Hello, everyone.  I think we'll get started. This is the lessons learned from the Bone versus University of North Carolina system case. I'm Jamie Strawbridge from Brown, Goldstein & Levy wearing a dark suit. Maybe we'll do some quick introductions of my fellow panelists starting with Dr. Megan Morris.

MEGAN MORRIS:  Good morning. My name is Megan Morris. I am an associate professor at the University of Colorado on the medical campus.  I am a PhD researcher in the medical school.  My pronouns are she/her/hers.  I am a white female with dark brown shoulder length hair, and I'm wearing glasses and a white shirt and a navy blue blazer.

CHRIS HODGSON:  I'm Chris Hodgson with P&A in North Carolina. I go by he/him. Short brown hair, white, and have typical lawyer uniform of blue suit and white shirt.  Red white and blue tie.

DENNIS QUON:  Hello, I am Dennis Quon, director of document accessibility solutions at Crawford Technologies, wearing a gray jacket, blue shirt, glasses, he/his/him.

JAMIE STRAWBRIDGE:  My pronouns are also he/his/him. I should have said at the outset. This case, Bone versus UNC, it involves access to Braille documents and also to hard copy large print.  Why we wanted to share our experiences with you all today litigating this case is because it's somewhat novel insofar as there's not a lot of case law about effective communication under Title II of the ADA in the hospital setting and what that means when we're talking about document requests for large print or Braille.

Our clients just weren't getting it.  So the case is a little bit of novel.  We saw more case law about ASL interpreters in the hospital setting, for instance, but not as much about request for documents.  So we wanted to tell you a bit about this case and our experience and see some more case law being developed in this area.  Maybe to start, Chris, I think maybe if you could give an overview of the case.

CHRIS HODGSON:  Sure. UNC is a large healthcare system with several hospitals that it owns.  It also has inpatient, hundreds of outpatient clinics, and beyond that, it manages what they call affiliates, which are other hospitals that it manages.  So the staff there, they are not UNC healthcare staff, but they manage all of these other hospitals.  Certainly CEO duties are being run by this healthcare system.  So it's a rather large entity that serves all kinds of patients throughout North Carolina, from really the seat of the mountains in North Carolina.  They are really quite expansive.

Our clients were three really good representatives of different types of people who use healthcare services.  One of them, our named plaintiff, John Bone, which is a great name for the case, right, Bone versus healthcare.  Keep that in the back of your mind if you're thinking of a case. He's the type of person who doesn't go use healthcare services very often.  He uses them when it's an emergency.  So he's going to be the type of person who goes when he sees a doctor, it will be when he needs to go to the hospital and get emergency services.
Our other client, Tim Miles, he's the exact opposite, someone with complex healthcare issues who has got to go seat doctor all the time, has several providers that he's constantly going to.  You know, he probably has 20-30 medical visits per year.  So he's just a constant client of the healthcare system.  Which also in our case made him a natural tester, because he's just constantly interacting with the healthcare system.

A third individual we had was a tester, or not a tester. He was a witness, not one of our named plaintiffs, but he's the type of person who doesn't have a whole lot of healthcare issues.  He goes once a year for his normal checkup, sometimes they do some blood work.
But all three of them have the same basic issues, which is that anytime they asked for auxiliary aid services, none of them could get it.  For Mr. Bone, for him it was Braille.  When he went to the emergency hospital and tried to get Braille, he would ask all kinds of people several times, can I just get Braille, can I just get Braille.  And when his bills came due, he got bills from several different entities, not just the hospital, but all the contractors that are working there.  And none of them were in Braille.  All standard print.

Eventually that led to creditors coming after him, and he would ask the creditors, can you just send me something in Braille?  If you really want me to pay this bill, send it to me. Eventually that's how he contacted us.  He realized, I can't get to these bills that they're all coming after me to pay for. Our client, Miles, the natural tester, he is something who is, his medications are constantly changing because of his condition.  And related to that, he's constantly having to follow several different types of medical instructions regularly.  For him, it was large print.  He has some vision, but he needed them to be at least 18 font and follow some large print standards.  And he would just get hundreds and hundreds of documents and every one of them was standard.

Before we filed the lawsuit, every single document he ever got was standard. He never could get large print.  It just wasn't an option.
After we filed, they adjusted a little bit.  They took their bills and they came up with a template, new template, for large print.  It in no way complied with large print standards, so he could read some of it but not all of it. And then they also adjusted what is called their after-care visit summary, which is what a patient would get every time you go to the doctor.  And there, they updated that.  They didn't change the formatting whatsoever.  They just enlarged the print.  So none of this complied with any of the standards.  He couldn't read most of the documents he was getting even though they were calling it enlarged. Beyond that, they never adjusted and still really haven't.  The consent forms you sign when you go to the doctor, the HIPAA notices, your rights and responsibilities that's given to you, none of that he could actually access.

As well as just medical instructions that you would get after, if you had an upcoming surgery and he was given medical instructions, he was expected to memorize it because he could never actually read any of it. Beyond that, just to add one other thing, I should say they also sent a bunch of documents into MyChart, which you all might be familiar with at this point.  It's electronic storage.  And none of those documents were being adjusted to large print.  All these documents were being created, and none of them through the alternate format that he had requested.

And then our final person, the one who goes once a year, he requested electronically accessible documents and eventually had to give up on MyChart because it was never accessible with JAWS, the screen reader software, as well as he could never get Braille.  So those were kind of the three people who interacted in this case, and despite the fact that UNC Healthcare is a very large entity with tons of resources, it could not provide hardly a single document into an accessible format.

JAMIE STRAWBRIDGE:  Thanks, Chris. Just very briefly, not to revisit the whole history of this case, but we did end upbringing suit on behalf of Mr. Bone and Mr. Miles as well as two organizational plaintiffs, the NFB and Disability Rights North Carolina as a plaintiff as well.  It was a really interesting case for a couple of reasons.  It was litigated very enthusiastically.  We've been litigating this for a lot of years.  And despite the documented requests for large print or Braille, this has not been a case that turned on an undue burden defense by UNC. In fact, it never served an undue burden defense.  It really is focused on what's being supplied under the ADA. So very briefly, I can tell you where we are in the case. We did get past the motion to dismiss filed by UNC's affiliate and we then tried mediation.  It didn't work. UNC and the affiliate both rehashed the arguments made in the motion to dismiss phase.  We got past that.

We did settle for Mr. Bone, NFB, and DRNC settled. In March 2021, we had cross motions for summary judgment, and this is probably worth highlighting.  In January 2022, a magistrate judge issued a 188-page decision that is extremely thorough and explained why UNC was violating the ADA. He concluded it was a violation from at least 2015-2018, and then with respect to some documents after 2018 as well. Some things were left for the jury, not decided.  At least in the RNR, things like deliberate indifference, which would entitle plaintiffs to damages, and but we thought for our side it was a really good R&R all the way around. Mr. Bone only went to Nash, the UNC affiliate, but the magistrate affiliate also concluded that UNC was liable under the ADA, both for direct reason because UNC was sending some bills, appointment reminders to Mr. Bone in standard print even though he had requested Braille, so there was that sort of direct reason in play.

But also an indirect reason, and that is because UNC, the magistrate judge concluded they were responsible for the actions of its affiliate under the ADA.  And also I think sort of because UNC had taken on day-to-day management responsibilities at Nash, so I think that informed his conclusions as well. After we got that good report and recommendation in the settlement conference and we ended up settling for damages against UNC with respect to both of our named plaintiffs, but what we did not settle was injunctive relief. That's really where we are now.  We filed for a permanent injunction in August of 2022, and we had sort of an interesting experience insofar as we were set to go down for a hearing on the permanent injunction in December and the day before that, UNC sort of unveiled several kind of new measures and said, well, we're doing all these new things now.  And so the situation is different.

So we tried to quickly analyze them, as quickly as we could, with help from Megan and Dennis, who you will hear from in just a second, and the judge basically said, well, I'm not sure where we stand under the new measures, why don't you meet and confer about it. So we attempted that, and still couldn't come together on injunctive relief. So that's where we are.  We filed a joint filing, and we're awaiting a decision on injunctive relief.  Hopefully that kind of locates the case a little bit from the lawyers' perspective. Megan is one of our two experts that we retained in this litigation, and she's sort of been invaluable explaining these issues to the court and what effective communication in the healthcare setting means.  So Megan, maybe you could just give us a broader picture overview to talk about effective communication in the healthcare setting and what it means?  This is a big problem.

MEGAN MORRIS:  So as I mentioned, I'm a researcher. I spend my days researching, and I focus on disparities in access to high-quality care to individuals with disabilities.  In particular, I had about a decade ago started writing about documenting patients' disability status in the electronic health record.  And why I was focused on that, it came up as an important part of this case as well, that we have population-level survey data demonstrating that individuals with disabilities experience significant disparities.  For example, I'm sure many of you have experienced this firsthand.  Women with disabilities, physical and/or cognitive, have much lower rates of preventive cancer screenings, due in part to issues such as inaccessible medical equipment and environments.

But what we don't have is data at a health organization level, and that's because organizations do not typically document who has a disability.  And this is very problematic.  Again, so you can't track quality of care, so you can't identify where the disparities exist at your organization, develop interventions, implement those interventions, and measure the effectiveness of those interventions. It's also important because we need to be identifying who has a disability and who needs accommodations.  And you don't know who needs accommodation if you don't ask them. So because of this work, I started getting calls about six years ago from healthcare systems across the country.  And what I found was that for a few different reasons, one due to Section 1557 of the ACA is organizations were starting to hire individuals to lead accessibility initiatives at their organizations.  

These individuals, for shorthand, I'll call them ADA coordinators, but they had very diverse job titles.  Sort of where they were located in their organization, what power they had at the organization varied, but typically they were given the directive of:  Make sure we don't get sued. So these individuals often were lost. One of the important factors, again, that came up in this case is that while the law dictates, for example, provision of effective communication, exactly what that looks like is not spelled out.  So it was really left up to the healthcare organizations to determine what does effective communication look like, what does that mean, how do we actually implement this at our organization.

There's no research on how to do this.  So we don't actually have evidence-based research that says this is exactly what you need to do to provide effective communication which leads to improved care outcomes and access to care. So what we ended up doing was getting these healthcare organizations together, these ADA coordinators, and we started a learning collaborative.  We currently meet twice a month, and it's a space for healthcare organizations to come and say, hey, I ran into this issue in the last few weeks.  I'm not quite sure exactly how to do this.  Has anyone figured this out.  As well as it's an opportunity to share resources, we swap policies. So for example, effective communication policies.  This is what's in my policy, what's in yours, how have you developed training materials for your staff and providers, etc.

So we have approximately, I would say, 45 large healthcare systems.  We represent probably 250-300 hospitals and thousands of outpatient clinics.  But it's really just, we've developed this based off of word of mouth.  And what I can say just generally of what is currently being done, in my previous life I was a clinician.  I am a speech language pathologist, I've worked in different health systems, and I've worked doing research in different healthcare organizations across the country from Mayo Clinic to the Harvard system to now UC Health.  And I can tell you, it's quite variable in how organizations are implementing, again, effective communication.  Some are saying we develop a policy, we put it on a wall, so we're good to go.  That is what Mayo Clinic does, throw them under the bus. They don't actually have someone boots on the ground implementing and ensuring that that effective communication is actually provided at the point of care and also any touch point that patient might have with the healthcare system.

In terms of, for example, documents in large print, it's quite variable.  We as a group are a group of healthcare organizations. Really what they say that they're doing is, and sort of what they're encouraging each other to do, is have standard documents such as you all know it, when we go to check in for a medical appointment, there is the HIPAA documents, the patient privacy documents that you need to sign, there are standard consent forms.  So again, our member organizations state that they have these standard clinic documents in alternative formats, mainly large print, available at all their clinics.  And then they do have processes for, if a patient does request accommodations specific to Braille, they have a system in place of how to develop or translate those documents into Braille. Where they're all still struggling is actually around that documentation of disability status.  I will say that organizations, again, are very variable.  Most are doing little to nothing around consistent documentation in the electronic health record.

We did have a win last summer.  In July of 2022, the National Coordinator for Health Information Technology, or ONC, they oversee all electronic health record companies or vendors in the United States, and they put out a requirement that all EHRs are required to have standard disability data elements.  And so the EHR vendors have been starting to push those out.  EPIC, the EHR in this case, the largest vendor in the country, they as of November have the standard data elements. What they don't have currently is the EHR tools to actually collect that data.  

So it's up to each organization to actually do a custom build, to build out, you know, patient questionnaires or there's something called the registration wizard that you can build in the disability status so it gets collected and then gets inputted.  And then it's also up to organizations to do a custom build, to have it appear in the electronic health record.  So for EPIC, that's called the Storyboard, a panel on the left-hand side of the medical record with vital information about that patient, their name, primary language.  And we've been encouraging organizations to put disability status there.  Again, it's very few organizations currently who have that. And I'll pause there.

JAMIE STRAWBRIDGE:  There's a lot to say about this.  I was actually hoping maybe you could just elaborate on two things that you said that have come up in the case.  And one is the recording of disability information of patients.  And the other is the processes for actually providing it.  I think there seems to be a lot of variability of how different organizations are doing that, but there also seems to be certain things that work in that space that are effective.  It might be helpful just to kind of explain what some of those things are in those two categories.

MEGAN MORRIS:  Yeah.  So again, for documentation of disability status, we really recommend that it's collected early and often.  What I mean by that is, you don't want to wait until the patient is in the exam room, is going back for surgery, before you ask them if they need any accommodations, because it's very difficult to be proactive and be able to provide those accommodations.  We have data from healthcare organizations talking about the scramble they feel when at the last minute they realize a patient needs an accommodation and figure out how do we quickly provide this accommodation. It stresses the clinic staff out.  It puts everyone behind in their time schedule.  And honestly, I think it then pushes off these negative feelings about that clinical interaction on to that patient.  That this patient is causing problems or making me late in my clinic schedule.

So yes, so it needs to be collected and it needs to be collected frequently or regularly, because disability status can change over time.
Again, organizations are typically not doing this. As was mentioned by Jamie at the beginning, a lot of information around effective communication has been around provision of access for individuals with hearing loss, in particular who are Deaf and use ASL.  So a lot of the individuals who are in charge of providing effective communication services and managing the programs actually are in the interpretation services Department of Health systems.  And really they're an ASL interpreter so they must know everything and anything about disability.  So these individuals are often, again, don't have the training, don't have the skills, but also don't know where to go to find information about providing comprehensive effective communication programs.  And so we really see piecemeal implementation of effective communication services.

You do again occasionally get organizations, I will call out Kaiser in California, they are some of the organizations leading and probably more innovative, and really I think that comes from, and they would say this too because I've asked them about this, is because of previous lawsuits and complaints filed with the DOJ.  And so those really do seem to affect how organizations do provide accommodations, and it is definitely a motivator for these organizations.

JAMIE STRAWBRIDGE:  And Dennis, I wanted to ask, maybe you could share some of your perspective because UNC, like Chris mentioned, is a large institution.  It covers I think 13 or maybe even more hospitals.  And you have a lot of expertise in working with large institutions.  And the processes that they can take advantage of to provide accessible documents to customers, patients, clients.  Can you talk a little bit about your experience in this litigation, what tools are available and kind of your experience of looking at what UNC was doing and how those two compared?

DENNIS QUON:  Sure.  I was brought in around document accessibility, the work flow.  My background is essentially understanding systems within large organizations that are generating things like transactional document statements, after-visit summaries, bank statements, credit card statements, and so on. Really what we began to do was analyze some of the documents that were being provided to the plaintiffs that were here and essentially look at how things were being managed.  And that included everything from the front end, which is preference management, or, if you will, did you disclose that you needed a certain type of document so that you could actually consume that information properly.

And then the back end, was it even feasible and possible for an organization like UNC or any large organization out there generating effective or transactional documents for information purposes to be sure it could be made into an accessible format. So a lot of work in this area early on was around Braille, large print. Even additional formats as well like accessible PDF and so on. A lot of times what we hear in the industry is that you can't do that.  Or they don't have a solution for that.  Yet we work with thousands of organizations out there that are generating information on a timely basis.  Whether it be through an E-chart like EPIC or a systematic approach generating that information. Can it be done? The other side of it also came down to looking at those documents and sort of saying, did they meet some sort of standard or guideline or best practice out there?

And we did the analysis on that as well to take a look at everything from how the documents were formatted.  Things like color contrast. Were they using effective fonts in that delivery.  Were the documents, you know, we saw some documents that were just images for that matter.  Of course a screen reader like JAWS would simply say, that's a graphic; I can't read it. We saw a lot of documents that we were able to analyze.  Basically, with that, we said, at the end of the day, these are all systemically generated, highly predictable, which means when there's predictability, they can be converted into various alternate formats easily.  And as such, I mean, your situation as UNC doesn't change very much versus an insurance company, HHS, CMS, or anybody out there.  

Because typically documents in this setting are highly personalized, highly confidential, and as a result, that information when it's laid down, whether digitally or an alternate format or on paper, they're going to be the same.  If you can print it and mail it, you can make it into something accessible along the way.

JAMIE STRAWBRIDGE:  That came up a lot in this case because I think from your perspective, Dennis, and maybe you could elaborate on this a little bit, there are automated processes that are available for creating these documents, and one thing that always struck us is, that can actually reduce the burden on staff.  If the processes are kind of automated and built in at the outset, that can actually make things easier, smoother, and more efficient for everyone. Maybe just to put a finer point on it, can you talk about those automated processes that are available?

DENNIS QUON:  Sure.  From industry, companies like ours, Profit Technologies, we produce solutions, software, that can convert billing or information that's being generated.  Those things are dependent upon systematic output. Everybody gets a credit card statement, for example, with a summary information of how much you have to pay and detailed information on your transactions. They're highly predictable places on the page.  So automation allows us to find things on the page, using technology to pinpoint a style sheet. If there's a heading over here, a table over here, an image over here, I can predict and basically tag that information because it's consistent on a document over document basis. It may be different between Chris and I.  We may have additional services or I may have additional services, but nonetheless at the end of the day, those documents are predictable in terms of finding that information.

So automation then allows us to build templates with business rules around it to essentially determine where that style sheet lays down things like titles, headings, tables, and so on. As a result of that, you can take that now and bring it to an accessible HTML5 document, PDF, Braille, large print, E-text, audio, and so on as a result of that very easily. So when we looked at the entire work flow of this whole thing, large organizations like UNC, whether it be bolting it on at the end of EPIC or in their work flow to get it printed and mailed to the final recipient out there would be very easy to do, at scale.  Some of the major issues that I typically hear is, you can't do that, there's no way, we have millions of documents.  But if you think about it, they print millions of these documents regularly for a sighted individual out there.  So this applies itself just the same in terms of producing inclusive accessible formats as well.

JAMIE STRAWBRIDGE:  Chris, maybe could you talk about in light of our experiences with this litigation, I think after so many years you must have learned -- us attorneys must have learned some lessons.  Can you talk a little bit about what we've taken away from our experience here and trying to prove our case?

CHRIS HODGSON:  The usefulness of experts, first off.  I say that jokingly, but also, as we litigated this case, you realized that the judge also wants to know why does this keep on happening.  Why year after year do you keep on producing standard print documents.  UNC wasn't going to be truthful as to what was going on and why it was so problematic, so we needed experts to tell the story of why is it these documents aren't getting produced, to have somebody look at them and accurately show why can't a person who needs large print read this document when part of it is enlarged.

So that part was definitely important, the importance of having somebody who can decode accessibility for the judge. Also the issue of best practices.  In their world as experts, they refer to what works as best practices.  This is when they get together and they all decide, okay, what are we all doing together that's actually getting people accessible documents?  And they start to find those and they start terming them best practices. In the legal world, that's very easy to use best practices as some kind of gold standard, something beyond effective communication.  And there's a lot of educating the judge in the court that, no, no, no, what they're talking about, even when we use the word "best practices," what we're talking about is what works.  

As we're going through this, there's no other alternatives to getting this.  We're just laying out what works.  This is not a gold standard; this is just what it is to have effective communication. So that became a really important key issue as we got down into injunction, what should injunction look like was really educating the judge as to what accessibility looks like and what processes need to exist in order for it to be achieved.  And hopefully when we get our injunctive decision, he'll side with us on that. A lot of this is really arguing late dispute has been getting into the nitty gritty of what needs to be in place in order to achieve effective communication.

JAMIE STRAWBRIDGE:  Can you say one more thing, which I wanted to get your thoughts on, which is when we were litigating this case, one thing that was striking was sort of what the policies and processes were for providing large print for Braille or accessible electronic documents, but then it seemed like the policies and processes were stronger for providing other languages, Spanish language documents.  Can you talk a little bit about that and how that informed the way we approached the case?

CHRIS HODGSON:  Yeah.  I think what's useful is that they have taken -- you know, healthcare systems have looked into how do we provide interpreters.  So they've thought through step by step how does the staff receive that request, how do we document it, how do we get it to another department so they can provide an interpreter.  So they've worked through the work flow processes that exist, and those are in writing. Then you get to auxiliary aids and services and it just says, "We will provide effective communication."  No procedures or explanation of how.

So we used a lot of that to point out, there's no process here.  There's a reason why when staff have these requests, they don't know what to do.  You're expecting them to call a department that doesn't exist to provide an auxiliary aid that they don't know how to provide. So just using I think what's out there and be able to show, they've done this when it comes to language-related disabilities.  These processes exist; they just don't exist for auxiliary aids and services and they need to be built out.

JAMIE STRAWBRIDGE:  It was really striking.  One of the hospitals, the process, if someone needed an auxiliary aid or service, it was dial 0 within.  Hospital for assistance. That level of no concrete instructions or help or even, you know, sort of an emergency contact.  And it was just wildly different from some other areas. Chris, one other thing maybe you could speak to is you've had a really effective relationship with one of the plaintiffs, Mr. Miles, and just sort of the organizational piece of this.  I mean, all the standard print documents that he was getting over years.  You did an effective job of having this relationship keeping them all organized so when it came time to talk about what does effective communication mean, you had a lot of evidence at your disposal.  Can you talk about that a little bit?

CHRIS HODGSON:  Yeah.  So Miles was what I refer to as our natural tester.  He was constantly getting documents, constantly going to these medical appointments, and he almost never got any documents in large print so for him it all blurs together, just one visit after another of the same result. Early on we really tried to start documenting his visit internally and just be able to show, what did you ask for, what was the response, these were the documents that were given.  And we just tracked that visit after visit, ongoing, through the years.  

And it was very helpful because especially as they kept on going like, be like, we fixed it.  And it's like, no, he just went to three medical appointments and this was the result of it.  And we had that logged throughout the entire process, and it became this good way to address the counter narrative that we've done enough, we've fixed it.  We kept on being able to go back to the appointments and show that this is not happening, and giving pretty specific details as to which documents were provided that were still not accessible.

JAMIE STRAWBRIDGE:  And maybe Megan and Dennis, I wanted to follow up on EPIC, just because that was the electronic healthcare record system at issue in this case, but also as Megan noted, extremely widespread use.  Does EPIC, I mean, if you're a hospital that wants to provide effective communication for blind parents, is EPIC helping?  Is it neutral?  Does it have restrictions?  Maybe could you put a finer point on that.


MEGAN MORRIS:  One thing I'll jump in.  Again, when UNC at one point said we fixed our problem, and so we asked what their new process was, and they said, well, across our hundreds of thousands of patients, we only have two patients with visual disabilities so our system is, we have one person, staff member, who each week reviews these two patients' upcoming appointments and sees if one of them has an appointment, and if they do, that person will call the clinic and say, you need to provide an accommodation, thanks, bye.
Which is just not a system. And we said, you have more patients than two. And they said, no, we don't. But you're not asking patients and documenting.

So EPIC.  Like the other EHR vendors, what they offer their clients, the health systems, is a base model called Foundations.  And so they build into that base model sort of what is required of all EHRs.  At each organization, you will have what's called expert EPIC builders, certified to build, and really they do all the customization of EPIC locally for that organization. So you could have two organizations using EPIC, but it looks fairly different based off of the customizations that they've made. In terms of how collaborative EPIC has been, so I would say for the last 3 years, I've had a monthly meeting on the books with EPIC, and they have promised me, oh, it's coming, it's coming, it's coming.  It really wasn't until last summer with the ONC requirements and the new policies saying hey, we need, you're required to have disability data elements.  

So really EPIC is looking for policies to dictate what they put into their base model.  And they do periodic updates.  And so if someone is an EPIC user and they have had it for 10 years, they will still get every 6 months an update of, again, the new requirements.  So EPIC will automatically push that out. Again, the tools for collecting disability status, because I think that's the first step.  That is, we actually have a grant right now and working with EPIC, and we'll be testing and developing those tools in the next year hopefully to be able to ultimately test that they are effective and then EPIC will push those tools out into all EPIC users. I think the next stage of this work is then how to connect let's say, again, someone has a visual disability and they need large print.  How does EPIC then build in so that it automatically prints those after-visit summaries in the right format for that patient.  So building in, again, sort of the provision of accommodations into the functionality.

But again, I think we're still a little bit out from that. And I will say that, again, EPIC really only started moving because of this federal policy.  They said, well, our organizations who all use EPIC, they said they would go to EPIC and say, can you build this for us, put this into your foundations, and they said they would always get the response, you're the first person to ever ask for this.  So again, it's sort of that power in numbers.  Through our collaborative of health systems, we were able to collectively also advocate to EPIC for the standards, and I'll give it to them, they are regularly engaging with us in listening to what the organizations are saying are the features that they want.
So we'll see again what action results, but that's where we're at right now.

DENNIS QUON:  At a more granular level, as we talk about EPIC as an HR, can it produce large print, for example, or some accessible digital formats. I think the challenge behind that whole thing is that, and this was working with other EPIC clients in the past, was that they said, yes, we can do, that absolutely.  The problem is, the EPIC builders out there are the ones designing these forms like after-visit summaries, the look and feel of how a statement will be done.  That's based on input from UNC at that point. So traditionally someone has an invoice and they'll say, I'll just copy that now into the EPIC system and progress from there.  There's no forethought on the fact, hey, I've got to have something accessible and what are the standards around accessibility because essentially EPIC system is a designer at the base level where you can design a form around something, but if you don't apply accessibility features into it, you're stuck with a regular sighted statement produced.  

That's what we began to see over and over again.  They began to say, yeah, I want to have a large print statement, and it really was to the effect of those who remember photocopiers, photo enlarging, taking an 11 point font and blowing it up to something larger, but not taking in best practices for things like columns or color contrast issues. So we saw over and over again a lot of color contrast issues, using this light blue font against a white background which would be washed out and unreadable.  We saw content being enlarged with three or four columns of information, and a person instead of reading top to bottom and going back up again, they were reading from left to right, right across.  So that information was hard to perceive and understand as far as that information was concerned.

So I think from the perspective of system side of things, there's a gap between everything because of how somebody goes to market with an after-visit summary, for example, or recall notice, or whatever the case may be because ultimately the person who is designing the form has to be informed and understand what accessibility is all about.  If they don't even do that, you're stuck at the beginning without even getting to accessibility.

Question and Answer Section 

JAMIE STRAWBRIDGE:  I think we've already gone past where we should asking if there are any questions from the audience.  So any questions?

SPEAKER:  Michael Bien, San Francisco.  Thank you so much for your presentation.  Is the EPIC website itself or the app accessible?

MEGAN MORRIS:  No.

SPEAKER:  So talk about an obstacle.  That's how you make appointments, read your records, get your records.  You guys haven't really talked about that.

MEGAN MORRIS:  Yes.  To quote someone I met with recently who has a visual disability, never met a patient portal that I was ever able to use. No. The patient portal which is often how patients interface with their healthcare organizations online is called MyChart for EPIC, is not accessible. Yes, I will say MyChart is more so even than what the clinicians and staff use is more customized.  So a lot of what then needs to be done is working with making sure that each organization, each healthcare organization, however they're building their MyChart, make sure it is accessible.

I will say that, so I have the contact of accessibility lead at EPIC, so I will often say, hey, this person told me X, Y, Z wasn't accessible, and he will say, oh, we have some tools, you have to go to this obscure manual to find how to do this.  But it's just hard to access. And then EPIC nationally keeps saying, well, we can't -- again, if each organization is doing their customization, we can't keep up with how to implement accessibility patches and fixes if they're just overwriting it with their customizations.

SPEAKER:  Corbb O'Connor.  I'm wondering where is the line between a preference and effective communication? I think just as an example we're all familiar with, we all have a digital program, I would love to have it in Braille but you don't have it in print and I don't have it in Braille, so we're equal. How does the law view that line between print, electronic, and Braille?

JAMIE STRAWBRIDGE:  That's an excellent question. It certainly came up in this case as well. I think under the regulations, the public entity is supposed to give primary consideration to what in this case the blind patient has requested.  And in this case, our plaintiffs requested large print and Braille, and those are two accommodations in all the UNC literature.  I mean, they have set out saying these are the kinds of auxiliary aids and services that we will provide to blind patients. So it was maybe less of an issue here than it could be elsewhere. One thing that came up was, well, wait a second, we were just talking about MyChart.  Our plaintiffs consistently did not get what they asked for, the Braille and large print, but can you go on MyChart and access the same healthcare information that way.

And the answer here, at least with UNC, is no.  In part because while documents are uploaded to MyChart, those documents themselves are not accessible. They don't have any of the metadata tagging. That's one of the things the experts examined in this case. As far as where the exact line comes or maybe there will be closer calls in other cases, but here at least, it was maybe more cut and dry.  You know, that our clients really needed the Braille or the large print hard copy and just weren't getting that.

HOWARD ROSENBLUM:  This is Howard Rosenblum from the National Association of the Deaf.  Thank you for the presentation.  There's a lot of parallels between what you're doing for blind access and what we experience in our office for Deaf access within the healthcare system.  There are huge disparities in both. What you just talked about, and I'm sorry I have to make a joke here, but it is an epic failure.

[Laughter]

On so many levels. You just mentioned many things where EPIC is trying to figure out how to do things, and it seems to me like we're doing this a bit backwards.  We need some sort of 508 standard or WCAG standards for healthcare records where the standard is set and done for the record in terms of what it should look like, not only for the patient who happens to be blind or Deaf or has any other disability, but also for the doctors who happen to have disabilities. Nurses who have disabilities.  Different people within the healthcare system that have disabilities. There should be some type of proactive standard set rather than having our current reactive system that we have now.

MEGAN MORRIS:  I would 100% agree.  One of my biases, I think some of the works the cases of ableism in our society are located in healthcare.  We just still have, I mean, I talk about the work I do and the most common response I get is, well, that's great except for all those people who are faking it.  And there's just these overt ableist comments that I am constantly getting.  A provider a few weeks ago was telling me about all the elaborate ways she makes sure she doesn't have any patient with a disability on her caseload.

So you have this, again, ableist health system that are led by doctors who are taught in medical school that disability is something we need to avoid and try to "cure."  So that really I think trickles down to all of these accessibility issues is, again, those doctors are leaders and they don't think that these patients require or deserve or need accommodations.  So we're just not seeing a whole lot of movement with sort of standards and policies.  And that's, again, my bias and opinion.

SPEAKER:  My name is Rick McPherson.  I came out of a P&A system.  And I was struck by the comments that you were making about record keeping and the importance of documentation.  I've also had some experience with a client who had a large number of interactions that we had to try and document.

I'm curious if you could talk a little bit about so how did you do that?  Did you like develop your own kind of software system, or was there something that you found that was particularly helpful to do that?  And I guess I'm asking you because it's a similar background.  If I was in a huge law firm that had all the software support, all the parallel support, that's a different answer.  But apparently you were able to do it with resources similar to what I might have.


CHRIS HODGSON:  So (chuckling) I definitely made up the system.  This is my first federal case.  I had very little to go off of.  So we do have a parallel.  We share that parallel amongst several attorneys.  So he would collect the documents, and I taught him how to essentially organize them based off of dates so they would be structured in a way that I would at least know when we were receiving them. From there, I just created a spreadsheet so that I could go through.  And our client was great about just emailing us after each visit.  "Had a visit to this clinic, these are the documents I got."  So I got those. 

Then I would have follow-up calls and document those every 2-3 months with him so that I was able to capture the four or five visits that he had had in that time period and we could go over them.  And the stuff I was capturing was, who did you talk to, did you request accommodations, what was the response, what documents did you receive, so we could just kind of break it down into a very straightforward narrative of what was going on.

RICK:  Now that you've been through it once, is there some program you wish you would have had or would you just update your system?

CHRIS HODGSON:  In many ways I feel like being able to call him on a regular basis and have those updates, I got to understand the experience of what it was to go through years and years of not getting documents, making the exact same requests.  It was really I think helpful for me to be able to empathize, to understand the growing frustration, in a post-Cummings world, that you don't get credit for all of the turmoil that you're getting from just years and years of deliberate indifference of people ignoring your needs.  So I really am glad that I was able to document the way I did, and I think it was helpful for me.

JAMIE STRAWBRIDGE:  Okay.  I think that's all we have time for in terms of questions.  Thank you, everyone.

[Applause]