A few years back, my wife and I wanted to clean our utterly disarrayed basement. Years of accumulated stuff had randomly accreted into piles and boxes and areas that, perhaps, one day we’d tackle. After buying my third set of pruning shears, we realized we needed some organization.

Fortunately, we discovered that our neighbor was a professional organizer devoted to organizing people’s houses. She helped us sort through 30 years of detritus and rearrange it neatly so that we could both see and access our belongings more efficiently. The principles she showed us proved deceptively simple:

• Put like with like.
• Decide what to keep versus what to trash or donate.
• Label and store items based on how you live.

Her succinct process of physical organization reminded me what information architecture, or IA, truly is: a method of organizing and classifying digital stuff so people can find and use it. It provides the basis for wayfinding (“Where am I?”) and findability​. It delineates the blueprints for information display, retrieval, and use (“Where does this stuff go?”).​ And it maps information to help users understand place, relationships, and possibilities.​

IA Makes Sense of Space

Similar to my basement, digital places can confuse people, especially as they move between areas no longer clearly divided as “digital” or “physical.” For example, a physically printed QR code on a smart plug enables a person to make that plug work…and also then to find instructions on setting that plug up in their mobile phone. As Paola Antonelli writes, “We live today not in the digital, not in the physical, but in the kind of minestrone that our mind makes of the two.” Using an IA approach helps people make sense of the spaces they maneuver through.

While IA has existed as a field for well over 20 years, lately it’s taken a back seat to other aspects of user experience (UX) — such as user interface (UI), content strategy, and interaction design (IxD). However, we miss a critical meaning-making moment in product design when we forget how important IA continues to be. Too often teams focus on what something looks like or how something functions without intentionally deciding how it’s organized.

Building a Foundation for Good IA

Like other aspects of UX, IA starts with understanding the user and their context: What are their behaviors, what are their goals, and how does a sense of information help them achieve those goals.

Conducting User Research

To understand how people use information, we observe their behavior, both in seeking information as well as using and storing it. Research from Marcia Bates and others showed us that people engage with information similar to how humans have engaged with their environment for eons.

“Information berrypicking” illustrates how a person goes from one information repository to another in search of information that helps them form a sense of meaning or place. Peter Pirolli and Stuart Card extended Bates’ metaphor into “information foraging,” indicating that people look for those areas of information that pose potential value.

Humans are informavores who look for an “information scent.” It indicates how likely their information pathway might reveal nuggets of valuable items.

People wander digital aisles as well, looking for meaning in the informational hallways they walk. Just as physical aisles can fail to meet needs (“why is breakfast cereal in the Home and Garden aisle?”), digital aisles can block our cognitive connections of task to goal. Knowing user’s goals becomes critical in determining how to design the pathways.

Assessing Your Information

We continue our research by evaluating an information environment. To organize information, you first have to know what information you want to organize. Is it existing information that needs better arrangement? Is there information that needs creating? Is there duplicate information that needs reconciling? To help us put like with like while we determine what needs to be retained, bundled together, and discarded, we use:

• Content inventory — identifying every piece of content in the information space. Think of this as a thing you finish and deliver, that is, a noun.
• Content audit — analyzing the content by type, purpose, redundancy, and viability to the user. Think of this as something you do, that is, a verb.

To understand how people name the stuff they use, we have a bunch of tools we can use. At Coforma, often we conduct:

• Search log file analysis — taking a look at the actual words that users entered when searching for things, followed by analyzing the terms that successfully matched targeted destinations…and the ones that didn’t.
• Card sorting — engaging with people to see how they organize terms (which can be things or actions) into sensible categories.
• Tree testing — asking people where they go to find or do something, by presenting them with a simplified hierarchy and giving them sample tasks.

Designing Information Spaces

Once we observe people interacting with existing and imagined terminology, we end up with a good sense of the terminology they need. Next we label information spaces, finding ways to store them for users to access and use. We see this labeling effort in the creation of navigation menus, headings for information repositories, and taxonomies.

Once we label these spaces, we then design digital guideposts and markers to help users wander through information spaces to find what they’re looking for.

We semantically structure the ways we craft our navigation tools as well as our search results pages and other artifacts, helping that wayfinding work for users. In addition, the blueprints we develop as wireframes also help define the space in which users live their digital lives.

Jorge Arango captured IA so well when he talked about IA’s concern “with the structural integrity of meaning across contexts.” IA helps people engage with that meaning across all experience touchpoints. As we look at their context through research, we need to understand that quest for meaning as well.

When we look at the output of what IA activities produce, we see site maps, taxonomies, and search results pages, for example. However, we also need to consider other artifacts so that we ensure our architectures expand with technology. Sometimes our traditional deliverables don’t provide enough framework for emerging interactions. Voice, virtual, and augmented experiences all need structure and classification, just as visual ones do.

For example, voice interfaces require IA. Providing information clues reduces the memory people must retain. How many times have you gotten lost in a voice response system, ending up shouting “Manager! Manager! Agent!” in some hope of bypassing an obtuse kudzu tangle of aural choices? Instead, a clear aural framework helps people know where they are when asking for an album to play, a forecast to be delivered, or a recipe to cook.

Our main human concern in IA remains not just the structure, but what people do within it. As Frank Lloyd Wright quotes Lao Tze at Taliesin West, “The reality of the building does not consist in the roof and the walls but in the space within to be lived in.”

In the same way, IA consists of the space where people live their information lives. It provides the structure, the bones, and the frame in which other activities operate.

When we design this space as an intentionally organized digital structure, people have markers to help achieve a better understanding of where they are and where they can go. They also experience a predictable sense of meaning — all of which enhances the experience of those information lives.

A version of this article originally appeared in the anthology, 97 Things Every UX Practitioner Should Know.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

Information Architecture Still Matters: How to Organize Digital Spaces was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Coforma CXO Ashleigh Axios will join the Rhode Island School of Design (RISD) Board of Trustees in 2021, helping set policies and provide organizational oversight to advance the school’s mission.

RISD, founded in 1877, is one of the first independent colleges of art and design in the US and continues its visionary legacy in its seven-year strategic plan, focused on recognizing the collective role of artists, designers, and educators as cultural innovators, and visioning ways of making important environmental and social justice contributions.

“A ‘radical experiment,’ RISD was founded and run for years by a group of women before any women had the right to vote in the United States. At its heart, RISD is a visionary creative institution. At its best, it’s ahead of the needs of an evolving creative class and the current era, thoughtfully using its vision and resources to create equitable opportunities and invest in future leaders. It’s an honor to join the esteemed RISD Board of Trustees to help advance this mission,” said Axios.

Axios graduated from RISD in 2008 with a BFA in Graphic Design and also met her husband, Nathaniel Axios, at school. She has acted as an ambassador for her alma mater for years, including serving on the President’s Alumni Advisory Council from 2017 to 2019 as a chief alumni advisor to RISD’s last president, Rosanne Somerson. Now she’ll join the Board of Trustees while they conduct a search for the next president of the school.

Axios joins many accomplished trustees on the RISD board including Shepard Fairey, artist and founder of OBEY; Ilene Chaiken, producer of hit series including The L Word and Empire; and Todd Waterbury, Chief Creative Officer of Target.

Ashleigh Axios is an international speaker, strategic creative, and an advocate for design’s ability to break barriers and create positive social change. Prior to her role at Coforma, she formed and led the in-house creative agency for marketing, communications, and brand identity solutions at Automattic, a technology company on a mission to democratize publishing and commerce. Axios previously served as the creative director and digital strategist for the Obama White House, bridging two presidential terms in the Office of Digital Strategy. She is also president of the national AIGA Board of Directors, after previously serving as president of the AIGA Washington, DC chapter.

Ashleigh Axios to Join Rhode Island School of Design Board of Trustees in 2021 was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Coforma’s Chief Experience Officer (CXO), Ashleigh Axios, has joined Chief’s network of women at the highest levels of their businesses as a Washington, DC Founding Member.

“Expanding to DC made the most sense as the District has become a center of power for women, as Kamala Harris becomes our nation’s vice president, women are confirmed for high-level Cabinet positions, and more women have been elected to the Congress,” Chief co-founder Lindsay Kaplan said in a statement to Built In. “We are not only able to support women executive leaders in each of these cities, but drive connections critical for changing the face of leadership.”

In a workforce where women hold only 23 percent of executive roles and women of color are historically further disadvantaged, Chief strategically connects women leaders, supports them with coaching and workshops, and helps them reach and maintain positions of power through mutual, networked support.

Chief curates core groups of eight to ten members based on responsibility level, career experience, and life stage. Groups meet once a month at the clubhouse for discussions led by a facilitator with at least a decade of experience in executive coaching or leadership development.

“I care deeply about gender equity and the power of convening, connecting, amplifying, and harnessing women’s impact on the business and social challenges of our day. I’m excited to be part of building this new community where I can continue to learn and grow, as well as mentor and support others in their leadership journeys,” said Axios. “Being selected as a Founding Member of Chief in DC, a city filled with brilliant leaders of every gender identity, is a special honor.”

Ashleigh Axios is an international speaker, strategic creative, and an advocate for design’s ability to break barriers and create positive social change. Prior to her role at Coforma, she formed and led the in-house creative agency for marketing, communications, and brand identity solutions at Automattic, a technology company on a mission to democratize publishing and commerce. Axios previously served as the creative director and a digital strategist for the Obama White House, bridging two presidential terms in the Office of Digital Strategy. She is also president of the national AIGA Board of Directors after previously serving as president of the AIGA Washington D.C. chapter.

Ashleigh Axios Joins Chief Network as Washington, DC Founding Member was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Health+ Lyme Disease Project Background and Approach

Lyme disease is the most common vector-borne disease in the US. Due to a wide variety of symptoms, people with Lyme disease today are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health.

Through research with Lyme patients, caregivers, leaders, and medical professionals, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating innovative solutions to increase the quality of life for individuals with Lyme disease.

The Health+ Lyme Disease Human-Centered Design Report includes in-depth patient archetypes, journeys, opportunities, and recommendations that can be used to improve the lives of those living with Lyme.

Read the Human-Centered Design Report

Creating the Opportunity Areas

The numerous opportunities for improving experiences with Lyme disease first arose from desk research conducted at the beginning of the project. After gaining a thorough understanding of today’s Lyme landscape, we used workshops, social listening, and interviews with patients, clinicians, and Lyme leaders to learn more about the gravity and priority of their needs. We sorted the opportunities into four main areas, focusing on awareness, diagnosis, care coordination, and life with Lyme.

“The consequences can’t be overestimated, now that Lyme disease has become an almost unparalleled threat to regular American life …. Really anyone — regardless of age, gender, political interest, affluence — can touch a piece of grass and get a tick on them.”

— Bennett Nemser, Epidemiologist and Senior Program Officer of the Cohen Lyme and Tickborne Disease Initiative at the Steven & Alexandra Cohen Foundation
“Lyme Disease is Baffling, Even to Experts,” The Atlantic

The four opportunity areas cover the experiences of Lyme disease from diagnosis through treatments, including issues like lack of awareness within patients’ communities and the challenges patients experience in managing their lives with persistent Lyme symptoms. These focused opportunities can be used to help bring awareness to the needs in the Lyme community, develop innovative solutions, and provide clear guidance to others looking to help improve Lyme experiences.

Opportunity Area 1: Broader Awareness of Lyme Disease

A deep level of Lyme awareness is lacking from initial prevention through treatment. As instances of Lyme disease increase, the risk of exposure becomes higher, and increased awareness of the vector-borne illness becomes even more essential.

In addition to regions known for ticks, Americans encounter tick exposures in places they don’t expect — on the job, while gardening or playing in the backyard, in urban areas, and even in locations not historically associated with Lyme.

“I didn’t even know what a tick was. I lived in Southern California by the beach. You know, people never talked about it. I never heard of it.”

— Patient

Because of limited, and in some cases, lack of knowledge of Lyme’s complexity, initial contact with a tick can be taken too lightly, leading to individuals not seeking the more effective, timely treatments until they experience symptoms that are too disruptive to ignore.

Atypical tick encounters, such as those that don’t result in a “bull’s-eye” rash, can also be downplayed by doctors when patients report them. This results in delayed diagnosis and missed opportunities to treat Lyme before the onset of symptoms.

“Yeah, I think what’s mind-boggling is the fact that not a single doctor even asked about Lyme disease, not one brought it up, and I wasn’t aware enough to ask them.”

— Patient

When a patient is finally diagnosed with Lyme, many experience discrimination from their providers and communities, stemming from a lack of understanding. The good news is that Lyme and its complex consequences can be prevented.

Recommendation Summary for this Opportunity Area

Lyme awareness needs to increase at every stage of the disease, from initial prevention awareness to medical understanding of how symptoms present themselves. As tick habitats spread due to climate change and other unknown factors, the public and the medical community need to become aware of the risk in non-endemic and urban areas. Beyond a general awareness of the existence of tick habitats and their proximity to people’s activity, Americans need to be made aware and mindful of the potential severity of the condition and how to act if they come into contact with a tick or experience Lyme symptoms.

Efforts to increase awareness among the public and medical professionals across the US can help prevent Lyme disease infection and improve disease identification.

Opportunity Area 2: An Accelerated Diagnostic Process

Because Lyme’s symptoms are diverse, misleading, and often incorrectly attributed to other illnesses, patients can face a long diagnostic journey. Just as rapid identification of symptoms and treatment can result in positive outcomes for patients, delayed diagnosis and misdiagnosis may lead to more severe and prolonged symptoms.

The lack of awareness surrounding Lyme disease prevents both patients and healthcare professionals from having a smooth and efficient diagnostic process. Patients whose diagnosis is delayed for any reason (e.g., misdiagnosis, their own or their doctor’s lack of knowledge) can experience such severe Lyme-related disturbances in their lives that they can end up financially, emotionally, and physically devastated with little reserves left to manage the disease itself.

Additionally, they may experience stigmatization around mental health issues and be ignored by their doctors, leaving them to manage their symptoms alone, feeling isolated and abandoned.

“I spent two weeks at the Mayo Clinic before my diagnosis of Lyme disease and was sent home with a diagnosis of idiopathic pancreatitis and depression. And I can say I was not depressed before I got to Mayo.”

— Patient

Such misdiagnosis of Lyme is common and can be so severe that some patients even undergo unnecessary surgeries and treatments for illnesses they do not have, further devastating their health condition.

“Instead of recovering after the surgeries, I just got sicker and sicker and sicker. I don’t know if sicker is the right word, but it took seven and a half years to get to an accurate diagnosis of Lyme disease and multiple tick-borne infections.”

— Patient

Delayed diagnosis, misdiagnosis, and the pervasive inconsistency of Lyme awareness and diagnostics within the medical community lead patients to become their own advocates or look for answers to their symptoms beyond formalized medicine. Most of the sample set of patients interviewed finally learned they had Lyme through their community or hearing a story of similar symptoms after spending thousands of dollars on misdiagnosis and countless hours researching their symptoms.

Difficulty with Lyme diagnosis is not limited to the patient experience; doctors also face challenges around diagnosis because there is a shortage of consistent, comprehensive information and procedures within the Lyme diagnostic process. Both Lyme patients and doctors would benefit from improved and standardized diagnostic processes.

Recommendation Summary for this Opportunity Area

To improve the diagnostic process, there needs to be a better understanding of the various symptoms of Lyme beyond the “bull’s-eye” rash, an alignment of the conflicting medical advice, and resources to empower patients and caregivers looking for answers to symptoms.

Cohesive and updated diagnostic guidelines and procedures around Lyme, while empowering patients to also better understand their symptoms, can also equip doctors with the necessary resources to make the diagnostic process as efficient and painless as possible for patients.

Opportunity Area 3: Cohesive and Comprehensive Care Coordination

The extraordinary efforts undertaken by patients to secure coordinated, consistent, ongoing, and effective care further impedes their ability to heal from Lyme while often draining their resources. Difficulties around care coordination span the entire care journey, from the search for appropriate care to interpersonal and physical treatment of the patient by medical providers once care is engaged.

Difficulty securing care is attributed to doctors’ disbelief in patient symptoms and their reluctance to treat them, resulting in patients feeling abandoned by healthcare providers. Even after finding a physician that will treat them, patients are expected to guide their own care path without any official guidance from the government and/or the medical community at large, which can lead to financial and health consequences.

They often hop from doctor to doctor looking for someone to care for them, a phenomenon another patient referred to as “common practice.”

“When you show up with these doctors, they’re used to people seeing 20 different doctors before, I think the average is 20 doctors before they get to the right doctor.”

— Patient

The doctors who eventually treat Lyme patients bear the burden of managing their entire health plan since other doctors refuse to coordinate with them.

The patient-doctor experience itself is also fraught with concerns. For instance, patients are constantly given differing advice from doctors, not knowing whom to believe or what to do because there is no consensus on the treatment provided by the government.

“I was being told the same thing over and over, ‘I’m the one that can help you. So if you don’t come to me, you’re not going to be helped.’ And I started to realize, you know, it’s just not true. Like it’s up to me. I’m the only one at the end of the day that’s going to get myself well, you know? I had to do it on my own because nobody else was doing it.”

— Patient

Lyme patients further cite medical abuse and discrimination by providers who do not trust them.

“The doctor brought us outside and said, [the patient] is faking it …. During the first couple of hospitals she stayed at, the doctors would come in while she was sleeping, take skewers, break them. So they would show up and stab her in the feet to test if she was not faking [her coma induced by Lyme].”

— Lyme caregiver

Additionally, patients’ treatments sometimes lead to debilitating side effects and significant financial debt. Even after finally finding a doctor who tries to help improve a patient’s outcome, further communication with other doctors in the patient’s network can pose new obstacles, as some do not believe persistent Lyme exists.

Recommendation Summary for this Opportunity Area

Care coordination for Lyme patients and caregivers needs to be further aligned, with guidance around treating the persistent symptoms of Lyme. With treatment alignment, healthcare providers could treat patients more effectively and collaborate more with the patients’ network of providers. The alignment would also relieve the burden on the patient and caregiver to find answers to their or loved ones’ symptoms.

Empowering providers to treat Lyme by equipping them with guidance and support would ease current care coordination faced by patients and caregivers.

Opportunity Area 4: Holistic Life and Care Management

Patients living with persistent symptoms of Lyme experience significant emotional and physical changes. Lyme’s toll on patients requires them to adapt to new ways of existing and adopt new ways of managing their lives.

Once patients realize their Lyme illness is persistent, they tend to have a hard time coming to terms with losing their sense of identity.

“One thing I’ve forgotten is how far away I am from being normal.”

— Patient

The typical social support structure of friends, family, and community that exist when individuals experience other illnesses is not always available to support Lyme patients due to a lack of awareness and knowledge about the disease. This sense of isolation is further exacerbated when symptoms prevent patients from socializing.

As a result of a lack of understanding within the community and no access to support resources, patients often isolate themselves, feeling like they need to mask their symptoms in front of their family and friends.

“I went to bed crying every night, and I never showed that to my family.”

— Patient

Patients experience guilt and feel they are missing out on their own lives and their family’s lives. Additionally, without the medical recognition of persistent Lyme, patients have difficulty planning for the future.

“And I, if I had known I was going to be this way my whole life, we wouldn’t have kids. It would have changed our financial situation, which could have helped a lot.”

— Patient

Persistent Lyme symptoms affect not only family life but work and education plans, too. As with family planning and participation, patients adapt all aspects of their lives to their symptoms.

Recommendation Summary for this Opportunity Area

As the burden of Lyme is both isolating by nature and patients already feel abandoned by the medical community, they would benefit from an improved safety net of resources that assist with the variety of lifestyle and well-being challenges they face in dealing with persistent Lyme.

Supporting patients with their care and life adaptation around Lyme would allow them to put more energy towards managing their condition and finding treatment for their symptoms.

Utilizing the Opportunity Areas and Recommendations

The report lays out recommendations that address specific needs within each opportunity area. These recommendations can be used as a jumping-off point for generating solutions that can improve experiences for patients at each stage of the disease, from awareness of the threat of Lyme, to diagnosis, to treatments.

It is our hope and intention that the Human-Centered Design Report will be used by government stakeholders and healthcare innovators at large to leverage findings within and across areas of expertise to collaboratively and concretely develop new, improved methods of providing healthcare, a health safety net, and increased quality of life for individuals living with Lyme disease.

To that end, an innovation challenge will leverage collaboration, research findings, and technology to develop new solutions that directly address the challenges and opportunities identified by the Human-Centered Design Report. Individuals and teams are working to develop creative solutions, ranging from marketing needs, to policy adjustments, to new technology and design prototypes.

Individuals and groups working independently from the Health+ program to develop innovative solutions using the Human-Centered Design Report’s findings are invited and encouraged to share their progress and achievements with us by emailing us at HealthPlus@coforma.io or engaging with the community at LymeX.Crowdicity.com.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

Health+ Lyme Disease Human-Centered Design Report Highlights Opportunity Areas and Recommendations was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

This Coforma blog series provides product teams with hands-on guidance for implementing workflows and best practices that prioritize the creation of an accessible user experience.

Over the course of my career, I have bounced back and forth between being a designer and a front-end developer. Most of the time, when I would design something, I would write most of the front-end code needed to implement it. I liked doing it. It also gave me some assurance that the design would be implemented properly, and the code would be clean. I’d run the HTML through my validation tools. Then I’d run it through one of my accessibility tools. No Web Content Accessibility Guidelines (WCAG) errors. No Section 508 errors. That work was DONE. It was clean; it was accessible.

Well, not quite. At some point, I learned that automated tools will only catch about 20-30% of the accessibility issues on your page. Essentially, these tools will tell you whether or not your code contains bugs. The other 70% relates to user experience issues. Left unchecked, at best, users will encounter additional, unnecessary frustration; at worst, they will not be able to receive critical services. The only way to address that other 70% is through manual testing. When I started trying to use my designs either with a keyboard or a screen reader, it really blew my mind how much I had overlooked. The anxiety hit me like a freight train, because I knew I put a lot of work out there that wasn’t manually tested.

Because accessibility often occurs in that gray area that falls between design and development, it is really everyone’s job — product managers and product owners, too!

Developing a Workflow that Prioritizes Manual Testing for Accessibility

As we know, accessibility covers a lot of ground: cognitive abilities, motor-function abilities, hearing, as well as sight. In all engagement with digital products, users still seek a clear understanding of what they can do, whether it’s to engage with other people, complete a form, learn something new, or withdraw money from their account. The fact that they might not have fine motor skills or clear vision shouldn’t block them from participating in “The Thing.”

Concentrating on the visual aspect of accessibility, I want to dive deeply into approaches that product teams can take.

I also want to stress, as a sighted user with all the domain knowledge of our own work, manually testing that work with assistive technology in no way replaces testing with real users. What it can do is remove some common hang-ups and allow research to uncover deeper usability issues.

When projects get moving, responsibility for creating an accessible experience may vary depending on the makeup of the team and individual expertise, but it is critical that everyone be part of the accessibility conversation. One might assume that using devices with assistive technology would mean expensive software, but there’s a good chance that software is already included on your machine, and if not, is freely available.

If you use Apple Products, you can enable VoiceOver, their built-in screen reader, on your MacOS or iOS devices. It takes a few minutes to learn how to use the MacOS keyboard shortcuts or iOS gestures and get started. VoiceOver is built to work with Safari, so if testing websites, you’ll want to use that.

If you are using Windows, you can check out NVDA for free or try out JAWS.

Another piece of assistive technology every machine has installed is the tab key, which is used for keyboard navigation. You might need to enable full keyboard accessibility if you are on a Mac.

After development is complete, the team will check to make sure that their work has been implemented as specified in their deliverables. Design and development teams should be conducting accessibility tests with screen readers and keyboard navigation in parallel with their visual QA work. In time, this process will start to become muscle memory, and when each team member is familiar with using assistive technology, they can more effectively have the conversations that prioritize accessibility considerations upfront.

This series will attempt to help product teams think about the user experience with assistive technology by drawing parallels with some of the ways sighted users experience the web and how we use visual and interaction design to provide that experience. We’ll look at examples that might pass an automated accessibility test but fail to make an accessible user experience. Some high-level HTML samples are included as examples of small changes that improve the user experience. These examples, paired with screenshots of what screen readers or other assistive technology are actually doing, provide some insight into how users with certain disabilities experience the web. It can be a starting point for teams to work together, and to begin having conversations about a more inclusive approach to user experience.

Scanning the Page

Whether you’re looking at a page for the first time or the hundredth time, you’re performing a quick scan. As you begin to get familiar with your screen reader, close your eyes and try to accomplish a task. Think of one that might consist of several steps. Aside from the obvious difference — being able to see — you will notice that the screen reader will only read where you’ve moved your indicator… to a button, for instance.

When you open your eyes, you can see everything that exists on the page: a content structure, navigational elements, forms, tabular data, and how all of those elements on the page relate to each other and the page’s overall purpose.

A visually impaired user doesn’t need to read through every single piece of content on the page in order to get that same information. Screen readers include a special feature called a rotor menu, and that is what a visually impaired user would use as a way to scan the contents of a web page similarly to how a sighted user would. In addition, the rotor menu serves as a navigational tool for jumping to specific sections, specific links, or form controls.

The HTML on the page generates the content within a rotor menu. Well-written, semantic HTML can make the rotor menu incredibly helpful. Poorly written, unsemantic HTML can make the rotor menu confusing or detrimental to the user experience.

The rotor menu contains several key sections. To control the rotor menu, use the left and right arrow keys to move between sections, the up and down arrow keys to select a list item, and the enter key to go to that element.

Landmark Roles

Landmark roles are one of many ways to make what appears in the rotor menu more meaningful. ARIA Landmark Roles are sections of the webpage that serve exactly as the name implies: navigational landmarks. The landmark roles are defined below.

• banner: Includes prime heading or internal page title. Indicated with role="banner or <header>.
• complementary: Supports the main content but can be separate and meaningful on its own. Indicated withrole="complementary" or <aside>.
• content info: Info about the parent document, usually containing links to privacy policy and copyright. Indicated with role="contentinfo" or <footer>.
• form: Contains form-associated elements. Indicated with role="form" or <form>, but does not appear in the rotor.
• main: Contains the main content of the document. Indicated with role="main" or <main>.
• navigation: Contains navigational links within or related to the document. Indicated with role="main" or <nav>.
• region: Content that is relevant to an author-specified purpose and important enough that users will want to navigate to specifically. Indicated using <section> with an accessible name provided by aria-labelledby, aria-label, or title .
• search: Contains a search tool. Indicated by role="search".

Some of these landmarks might appear obvious where they begin and end, but developers should work with designers on exact designations. For example, it’s really important that the main content is really the main content because, in the rotor menu, these are both important definitions and navigational elements. Placing main content outside of the role="main" landmark might cause users to miss important content, while placing content that isn’t main content inside the role="main" landmark could degrade the user experience because the user would have read through irrelevant content.

It is also possible to have more than one landmark role on a given page. For example, multiple navigational landmarks are quite common. You can provide helpful context inside the rotor menu by using aria-label, aria-labelledby, or title (though this attribute provides a name, we don’t recommend using it to name landmarks). Using aria-labelledby is preferable because it references another HTML element, allowing the translation plugins to translate the content.

Without naming these navigation landmarks, they will display in the rotor menu as navigation and navigation. Even though there is a heading element inside the landmark, it will not sufficiently name the landmark.

<nav role="navigation">
   <h3 class="screen-reader-only">Main</h3>
   <ul>
      <li><a href="#">Nav 1</a></li>
      ...
   </ul>
</nav>

<nav role="navigation">
   <h3 class="screen-reader-only">Social media</h3>
   <ul>
      <li><a href="#">Twitter</a></li>
      ...
   </ul>
</nav>

Naming these landmarks with aria-labelledby gives each of them a clear name in the rotor menu, displaying as “Main navigation” and “Social media navigation.” Note that you will not need to include the word “navigation” in the name itself. We have also changed the heading to a <span> because, in this case, the headings might not be useful in the rotor menu’s headings section as part of the document outline. Even though this example illustrates a name that is hidden from sighted users, there are often times where it should be made visible.

<nav role="navigation" aria-labelledby="main-heading">
   <span class="screen-reader-only" id="main-heading">Main</span>
   <ul>
      <li><a href="#">Nav 1</a></li>
      ...
   </ul>
</nav>

<nav role="navigation" aria-labelledby="social-heading">
   <span class="screen-reader-only" id="social-heading">Social media</span>
   <ul>
      <li><a href="#">Twitter</a></li>
      ...
   </ul>
</nav>

Best Practices for Product Teams

Improving the user experience with landmark roles can be achieved through the following best practices:

• Ensure roles are properly defined and communicated.
• When using aria-labelleby, the team should discuss whether the associated element should be a heading (if the heading also helps outline the document structure) and whether the element should be made visible to sighted users.
• Give meaningful names to landmarks that are special sections, or where multiple landmarks exist.

Headings

The headings section in the rotor menu outlines the structure of the page content. Think about the way you look at a Word document or Google Pages outline. That is what this part of the rotor menu does. If your headings are not nested properly, your document structure will convey content incorrectly.

Note that the code here jumps directly from level 1 to level 3. For a sighted user, this is a detail that might not matter much because the visual hierarchy would be unaffected. However, in the rotor menu, it is difficult to determine what the true structure of the page might be.

<h1>Improper nesting order</h1>
...
<h3>Section of the page</h3>
...
<h4>Subsection of the page</h4>
...

Always use the semantic heading nested in the correct order. If you want to change any aspect of the heading’s presentation, use CSS. Here is the same document using utility classes to set the heading presentation. You don’t have to use utility classes, but you should always use CSS. Now, the rotor menu displays the proper document structure.

<h1>Proper nesting order</h1>
...
<h2 class="font-size-lg">Section of the page</h2>
...
<h3 class="font-size-md">Subsection of the page</h3>
...

Best Practices for Product Teams

Improving the user experience with headings can be achieved through the following best practices:

• Instead of talking about heading sizes by their heading level, “Use the H3 instead of the H2,” for instance, talk about them using some other label. “Use the large font size for H2s instead of the extra-large font size.” Talking about font sizes by heading level may lead developers to implement them that way.
• Think about where some sections of content might help visually impaired users by placing a heading that only screen readers can access.

Links

The rotor menu will list every single link on a page. Since links are presented in a list according to their text, they will lack some important context if not labeled effectively. Alternatively, a user might choose to use the tab key to navigate through each of the links on the page.

While a sighted user might gather some context by quickly glancing at the link’s surrounding content or UI elements, a screen reader would only be able to focus on the link text as the user attempts to navigate each of the links. They would have to perform additional work to get enough context to understand what the link was going to do.

For example, let’s say your UI included a set of cards for each of your 20 team members, and each card included a link that reads “view details” and opens a page with more information about that person. For a sighted user, the UI might be perfectly sufficient. Each card is nicely contained by a border, and inside that border is a name, maybe a photo, and the “view details” link. The sighted user would likely understand exactly what happens when they click the link.

In the rotor menu, this is utterly unhelpful. The links section will present 20 instances of “view details” in a row. Likewise, for someone tabbing across those links outside the rotor menu, they would hear “view details” over and over. They would have to read through some of the surrounding content to try to understand where each “view details” link might point. This can also become increasingly confusing if the link appeared before the name (which gets into the concept of “meaningful order,” discussed in future installments).

<div class="card">
   <header class="header">
      <h2>Jared Cunha</h2>
   </header>
   ...
   <div class="card-footer">
      <a href="#" class="button">View details</a>
   </div>
</div>

To improve the experience for people with a visual impairment, you can include extra text that will only be available to screen readers. This also applies if the HTML element is a <button> or role="button" is in use. However, any element described as a button will populate the rotor menu’s Form Controls section.

<div class="card">
   <header class="header">
      <h2>Jared Cunha</h2>
   </header>
   ...
   <div class="card-footer">
      <a href="#" class="button">View details <span class="screen-reader-only">about Jared Cunha</span></a>
   </div>
</div>

Best Practices for Product Teams

The following best practices will help your team optimize the user experience for people with visual impairments:

• Think about how hidden text can add clarity to link text, especially when the link text is repetitive in the UI. Be sure the hidden text is placed at the end of the text that appears in the UI.
• Don’t use repetitive link text if the links point to different locations.
• Indicate when links will download a file using either “Download” or “(PDF)” in the link text.
• Always link phone numbers. Use an aria-labelfor phone numbers, adding spaces between each number so that a screen reader announces them more clearly. For example, <a href="tel:555-555-5555" aria-label="5 5 5 — 5 5 5 — 5 5 5 5">555-555-5555</a>.
• In general, write link text that makes sense in isolation, both on the page and inside the rotor menu.

Form Controls

The rotor menu will also display all form controls on your page. These can include any type of input, select box, text area, or button (including any type="button"that wouldn’t submit a form, but serve as a UI control). Here, each form element in the rotor menu is displayed by its label.

Form controls can be required, invalid, disabled, or read-only. If you are only visually styling those attributes, it is impossible to tell which form fields include these attributes. The rotor menu will provide the value before the label. Note that in a real-world application, the value of an input would not indicate if a field was disabled or read-only, as the following examples do.

<label for="input-type-text">Input 1</label>
<input id="input-type-text" type="text">

<label for="input-type-text2">Input 2 <span title="required">*</span></label>
<input id="input-type-text2" type="text">

<div class="form-group form-group--error">
   <label class="label--error" for="input-error">Input 3</label>
   <span class="error-message" id="input-error-message">Helpful error message</span>
   <input class="input--error" id="input-error" type="text" aria-describedby="input-error-message">
</div>

<label class="label--disabled" for="input-type-text4">Input 4</label>
<input class="input--disabled" id="input-type-text4" value="this is disabled" type="text">

<label class="label--readonly" for="input-type-text5">Input 5</label>
<input class="input--readonly" id="input-type-text5" value="this is readonly" type="text">

If you were scanning through the page on the rotor menu, could you tell which fields were required, had errors, or were disabled? Using HTML attributes, each field’s state is properly conveyed in the rotor menu. In the updated example below, we can assume that the class selectors were changed to attribute selectors to provide visual styling.

<label for="input-type-text">Input 1</label>
<input id="input-type-text" type="text">

<label for="input-type-text2">Input 2 <span title="required">*</span></label>
<input id="input-type-text2" type="text" required>

<div class="form-group form-group--error">
   <label class="label--error" for="input-error">Input 3</label>
   <span class="error-message" id="input-error-message">Helpful error message</span>
   <input id="input-error" type="text" aria-describedby="input-error-message" aria-invalid="true">
</div>

<label class="label--disabled" for="input-type-text4">Input 4</label>
<input id="input-type-text4" value="this is disabled" type="text" disabled>

<label class="label--readonly" for="input-type-text5">Input 5</label>
<input id="input-type-text5" value="this is readonly" type="text" readonly>

• Standard text fields will be read as “edit text.”
• Read-only text fields will be read as “text” when using the readonly attribute.
• Required fields will get read as “required” when using the required attribute.
• Disabled fields will get read as “dimmed” when using the disabled attribute.
• Invalid fields will get read as “invalid” when using the aria-invalid="true" attribute.

Best Practices for Product Teams

A few things to consider when programming form controls for accessibility:

• Make sure all form controls are properly labeled.
• Ensure attribute information is conveyed similarly for sighted and visually impaired users alike.
• Don’t rely solely on ARIA attributes. Make sure that sighted users can clearly understand these attributes as well.

Tables

The rotor menu also provides a list of every table on the page. Since we’re focused on the rotor menu, we will not be getting into complex table examples here. In addition to semantic markup, one thing every table needs is an accessible name. Failure to provide an accessible name may not generate an error in some tools. But without one, the rotor will outline the table section as follows:

• “3 columns 5 rows”
• “2 columns 4 rows”

<h4>Top documents</h4>
<table>
...
</table>

<h4>Store hours</h4>
<table>
...
</table>

Note that using <h4> + <table> will not give the table a proper name in the rotor menu. You must name it with <caption>, aria-label, or aria-labelledby. This will give the table a name in the rotor menu, and that name will also be announced when the user navigates to the table. With a name, the rotor menu will now list:

• “Top documents 3 columns, 5 rows”
• “Store hours 2 columns, 4 rows”

<table>
<caption>Top documents</caption>
...
</table>

<table>
<caption>Store hours</caption>
...
</table>

Best Practices for Product Teams

The following best practices will help your team optimize the user experience for people with visual impairments:

• Every table should have a caption.
• The caption must be included in any design, and the developer must properly associate the table with a <caption>, aria-label, or aria-labelledby.

Summary

Visually impaired users rely on the rotor menu as both a way to quickly scan important parts of a web page and as an important, in-page navigational tool. Writing semantic HTML and providing helpful names will ensure that the content in this menu is conveyed in the same way as your visual design presentation. The demos presented in this article were limited in scope in order to illustrate key concepts. On any full web page, there will be substantially more items for a user to sift through, which is why naming is so critical to the user experience.

While this article offers suggestions to improve the user experience for assistive technology users, you should make sure to include people who rely on assistive technology as part of your usability testing plan. Support your users by writing semantic markup and do not use accessibility overlays. Additionally, your website should include a link to an accessibility statement on every page where users can report any accessibility issues.

About Jared

Jared Cunha is Director of Product Engineering at Coforma. He has over 15 years of experience working on digital products in fields ranging from online publications to e-commerce to Federal government. He has contributed to the U.S. Web Design System, and his work has been seen and used by tens of millions of people. He works closely with design teams, helping to ensure technical feasibility concerns are met, user needs are properly implemented in the UI, and that accessibility considerations are supported throughout the project development lifecycle.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

How Product Teams Can Work Together to Build an Accessible User Experience: Creating Scannable Web… was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Health+ Lyme Disease Project Background

Lyme disease is the most common vector-borne disease in the US. Due to a wide variety of symptoms, people with Lyme disease today are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health.

Through research with Lyme patients, caregivers, leaders, and medical professionals, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating innovative solutions to increase the quality of life for individuals with Lyme disease.

The Health+ Lyme Disease program cycle is supporting the LymeX Innovation Accelerator (LymeX), a $25 million public-private partnership between the Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation.

Read the HCD Report

Creating the Journey Maps

A number of inputs informed the journey maps in the report, totaling 698 hours of discovery:

• Desk research: We read articles and white papers, and listened to podcasts to understand multiple perspectives of today’s Lyme landscape.
• Social listening: We joined public Lyme community groups on Reddit, Facebook, and other social media platforms to get a glimpse at candid dialogue in the Lyme community that brought to life common burdens, encouragement, and guidance.
• Workshops: We gathered healthcare providers, Lyme leaders, caregivers, and patients for a multi-part, virtual workshop to further understand the participants’ stories, shared understandings, and sometimes differing opinions.
• Interviews: We had one-on-one, hour-long conversations with healthcare providers, Lyme leaders, caregivers, and patients to understand their pain points, successes, and overall experience with Lyme.

To build the journey maps, we focused specifically on the various patient stories from our interviews detailing people’s experiences beginning with their initial Lyme contact through their current management of Lyme symptoms. This information allowed us to build dynamic journeys that help frame patients’ experiences with Lyme today. Because Lyme experiences can be complex, lasting anywhere from a couple of weeks to multiple decades, we mapped two distinct journeys: “The Diagnostic Journey” and “Treatment Journey for Persistent Symptoms.”

The Diagnostic Journey

The Lyme diagnostic journey is a crucial and influential phase in the patient’s overall encounter with Lyme disease. When searching for a diagnosis, a patient and/or caregiver can experience discrimination, misdiagnoses, and mistreatment, forcing them to become an advocate and seek answers for their Lyme symptoms.

“At that time I took my condition into my own hands, and I just was sort of grasping at straws.”

— Patient

The prolonged diagnosis process can be so damaging and traumatic to the patient that it can leave them more vulnerable to Lyme’s impact on their health. Not understanding the cause of their symptoms can be costly in other aspects of their life as well.

“My doctor said that I was the problem, and my parents believed him. It broke my heart. After that, I was just so angry, I was 14, and nobody believed me. It was just torture.”

— Patient

By mapping out the Lyme diagnostic journey, we uncover the patient and caregivers’ pain points and key clinician touch points. These touch points show us where processes can be improved and streamlined to help ease the suffering that patients might endure throughout their healthcare journey.

How We Formed the Diagnostic Journey Map

In our interviews with patients, we asked them to walk through their initial awareness of their symptoms when they were diagnosed accurately with Lyme. We used these insights to build out multiple paths that illustrated the different experiences they had at this stage: the costly specialist cycles they might get stuck in, the misdiagnoses backtracking their progress, and the pivotal moment that prompted the need for self-advocacy. By zooming out on this overall structure, we created explicit visual, written, and audio content that shows how complex the journey can be.

After we laid out the different paths a patient might travel to reach a diagnosis, we used our research and clinician interviews to bring further context and additional perspectives to the journey, such as the consequences of delayed diagnosis.

“It can get a bit frustrating. If things were caught a little bit earlier, people wouldn’t have to suffer as much. They could recover quicker from treatment.”

— Clinician

We also included a journey key that codes the pain points, self-advocacy moments, positive endpoints, and negative endpoints for patients.

Read the full report here.

The Treatment Journey Map for Persistent Symptoms

The treatment journey for persistent symptoms is an ongoing, everyday experience for some Lyme patients. Currently, there are no concise answers or guidance around treating the persistent symptoms of Lyme — a situation that often forces patients to take care coordination into their own hands.

Adding to the responsibility of coordinating and advocating for their care, patients may also face Lyme’s severe, persistent symptoms and treatment side effects that can throw off their sense of normalcy. Because of this loss of normalcy and the lack of understanding around Lyme from patients’ communities, they often feel isolated in their suffering and can experience severe mental health setbacks.

“I had very little support from my family because they didn’t understand the disease. They couldn’t fathom that I could have a condition that could be so debilitating yet not recognized by doctors. So that was really hard with family.”

— Patient

Many patients adapt their lives to their condition and Lyme symptoms. The journey map for persistent symptoms highlights opportunities to provide better access to sufficient care and improve the support networks that serve patients.

How We Formed the Treatment Journey Map for Persistent Symptoms

In our interviews, we asked the patients with persistent symptoms to describe their day-to-day with Lyme, how they found their current treatment, and what they still struggle with when managing Lyme today. We also asked the healthcare providers currently treating persistent patients about their experience with the multitude of patients they have seen and treated.

We learned that the treatment journey map for persistent symptoms is a bit more open-ended than the diagnostic journey map from those interviews. While the diagnostic journey eventually leads to the patient either being correctly diagnosed with Lyme or to them abandoning their pursuit for diagnosis, we formed the treatment journey map, aside from a few exceptions, to end in two primary cycles: “The Switching Treatments and Doctors Cycle” and “The Engages in Ongoing Care Maintenance Cycle.”

“There are some people that I don’t know if we’ll ever get fully to optimal health, we’re just trying to support them and lower that inflammation they’re under and, you know, get them a better quality of life.”

— Healthcare provider

After we formed the journey map, we used our findings from the Lyme leaders’ interviews to cross-check our map and provide further insight into endpoints on this journey. Today, many Lyme leaders have Lyme and are still actively stuck in the management cycle, adapting their condition to their leadership role, further confirming our maps. Other leaders work to provide resources and new policies to help patients stuck in these cycles. As long as the symptoms are persistent, the patients will be stuck in this constant journey of adapting their lives to their situation, sometimes sacrificing their relationships, life plans, and mental health to do so. We also included a journey key that codes the pain points, self-advocacy moments, positive endpoints, and negative endpoints for the patients in the journey.

Read the full report here.

How the Journey Maps Can Help

The journey maps provide an understanding of the patient experience, including where they started and where they are now in their Lyme journey. These maps can be used to build a more profound empathy for the Lyme community, provide guidance for patients along their path, help educate the public and the medical community on the Lyme patient experience, and to spur insight-driven innovation around diagnostic and treatment solutions built around patient experiences in the future.

Read the Report

Journey maps are just one component of the Health+ Lyme Disease Human-Centered Design Report. We have provided accessible ways to examine the content through visual, written, and voice formats for the journey maps. The report’s findings also include in-depth patient archetypes, more detailed narrative journeys for each of the journey maps, opportunity areas, and recommendations that can be used to improve the lives of those living with Lyme.

Read the report

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

Health+ Lyme Disease Human-Centered Design Report Highlights Two Significant Patient Journeys was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Health+ Lyme Disease Project Background and Approach

Lyme disease is the most common vector-borne disease in the US. Due to a wide variety of symptoms, people with Lyme disease today are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health.

Through research with Lyme patients, caregivers, leaders, and medical professionals, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating innovative solutions to increase the quality of life for individuals with Lyme disease.

Read the HCD Report

Research for the Human-Centered Design Report included comprehensive recruitment across various demographics, such as age and gender. We also recruited across different geographic locations, including all states in the New England and Great Lakes regions, as well as northern California. The team conducted 53 hours of interviews, 7.5 hours of workshops, read numerous articles and listened to many podcast series to gain a thorough understanding of the Lyme landscape. After research was validated with a roundtable of subject matter experts, the team synthesized the findings into patient archetypes, journey maps, opportunity areas, and recommendations.

How the Archetypes Were Developed

Through the distillation of the discovery process, we developed four archetypes representing Lyme patient experiences that surfaced via interviews and workshops. We did this by looking over an array of qualitative data to discover similarities and patterns we saw in the patients’ barriers, needs, and actions.

Lyme’s wide range of symptoms, unpredictable flare-ups, and overall symptom severity considerably disrupt the patients’ lives in various ways, including caregiving responsibilities. A patient explained how the unpredictability impacted their plans: “I don’t know what I’m going to feel like day-to-day. And it’s tough to plan for anything.” Because Lyme derails people’s lives so profoundly, Lyme’s level of disruption became the first variable we selected to help group the patients into archetypes. The factors of this disruption include, but are not limited to, symptom unpredictability, enrollment in school, provisions to take leave from work, and engagement in future family and financial planning.

While the level of disruption varies from case to case, this variable splits into “Fully Disrupted” and “Semi-Disrupted” to form distinct archetypes. Fully disrupted includes the range of patients and caregivers for whom Lyme results in forgoing their lives and sense of “normalcy” altogether to manage their or their loved one’s severe condition. Semi-disrupted includes the range of patients and caregivers whose lives are adaptable to their or their loved one’s mild to moderate condition.

The second variable used to form the archetype groups was the patients’ capacity to manage Lyme’s disruptions in their lives. Capacity deals with the constraints they face in coordinating their care, including, but not limited to, their physical and mental state as a result of their symptoms’ impact and the financial and social support they have access to. One patient described their financial capacity as: “I spent thousands and thousands and thousands of dollars on medical bills. I luckily do have that money, but many people with Lyme disease are not financially independent or have a family member or someone that can help pay for these treatments. I have a friend that ended up becoming homeless, trying to pay for Lyme disease treatments.” These constraints affect patients’ ability to advocate for themselves and to balance their Lyme with competing responsibilities.

For the archetype grouping, the level of capacity also splits people into two groups: “With Capacity” and “Without Capacity.” The “With Capacity” grouping covers the range of patients and caregivers that have the ability to pay for expensive treatments, the time to manage Lyme, and the mental and physical condition to self-advocate for their treatment. In comparison, the “Without Capacity” grouping covers the range of patients and caregivers who may not have the flexibility and/or time to manage their condition to the extent needed. They may also be impacted so severely by their condition that they can no longer independently care for themselves.

While capacity and disruption are interrelated, capacity refers to people’s empowerment to manage their condition, and disruption deals with the extent to which Lyme interrupts their daily life and responsibilities. From these two variables, we formed a matrix that split the archetypes into four groups: Disrupted with Capacity, Semi-Disrupted with Capacity, Disrupted Without Capacity, and Semi-Disrupted Without Capacity.

Disrupted with Capacity

The Disrupted with Capacity archetype is somewhat equipped to manage Lyme’s severe impact on their occupation/education, community, and well-being. They have the finances, networks, and/or community support necessary to reorient their lives around their Lyme-related disruptions. This allows them to find new resources and information on Lyme, secure additional social support, take a proactive role in their treatment, and even readjust their source(s) of income.

Due to the capacity they have remaining to manage the disruptions of Lyme and its coinfections, they often take on the role of an informed influencer who speaks to what’s happening within their lives and supports others in navigating their journeys with Lyme. Because the range of information regarding Lyme treatment and their financial and personal support system allows them to explore options, it can sometimes be challenging for this group to filter out what information is directly relevant to their needs.

Key Opportunity Area

There’s an opportunity to support this group by providing guidance when planning for their future and deciding their medical treatment. This group also needs a supportive community to share and collaborate with other Lyme patients and caregivers.

Semi-Disrupted with Capacity

The Semi-Disrupted with Capacity archetype can manage Lyme’s impact while actively pursuing an occupation and/or education with an optimistic view of their future plans. Their ability to meet those demands derives from their access to resources and support potentially provided by family, community, and organizations. They proactively collaborate with their team of doctors and play a significant role in driving their care plan. However, Lyme’s unpredictable disruption to their busy schedule may throw them off track and cause them to need adaptable occupational accommodations from time to time.

Key Opportunity Area

There’s an opportunity to support this group by creating adaptive occupation and education environments that allow them to fully participate while managing their unpredictable symptom flare-ups. This archetype also may need guidance for their condition and its impacts on their future plans and health.

Disrupted Without Capacity

The Disrupted Without Capacity archetype experiences the full gravity of their symptom severity across all facets of life, and they cannot always independently coordinate their care. Therefore, they depend on their caregivers to help them advocate for their diagnostic and care coordination. Their disrupted and constrained capacity can leave them vulnerable to medical discrimination and sometimes medical abuse, as they depend heavily on their caregiver to advocate on their behalf.

Key Opportunity Area

There’s an opportunity to support this archetype, providing them with advocates and caregivers to help them navigate the difficulties of their severe condition.

Semi-Disrupted Without Capacity

The Semi-Disrupted Without Capacity archetype experiences Lyme’s impact while balancing the demands of providing for themselves and their loved ones. Their time is an in-demand resource that is continually in low supply. One patient notes his struggle to balance the amount of time he feels well with the demands of life, family, and work: “You know if you have four hours where you feel well enough to be with the world and that’s it, how do you portion that? How do you have a job and make a living? How do you have a marriage? How do you be a father? How do you be a son?”

The pressure to perform as a full-time employee and provider emotionally and physically constrains them, preventing them from taking a proactive role in their care. The pressure to perform also forces them to mask their symptoms from their coworkers, community, and family, further isolating them and potentially worsening their symptoms.

Key Opportunity Area

There’s an opportunity to support this archetype, providing them with resources to help with childcare, medical bills, and their occupation/education.

Next Steps for the Archetypes

It is our hope and intention that the archetypes identified in the Health+ Human-Centered Design Report are utilized to improve the lived experiences of patients and caregivers dealing with Lyme. By meeting the patients and caregivers where they are, we can solve their immediate needs and goals.

About Health+ Lyme Disease

The Health+ Lyme Disease program cycle is supporting the LymeX Innovation Accelerator (LymeX), a $25 million public-private partnership between the Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Coforma facilitates the Health+ Lyme Disease program, collaborating with HHS, PISTIS, CODE, and Ensemble to engage stakeholders, end users, and cross-discipline SMEs to execute the program’s component areas.

Since October 2020, Health+ Lyme Disease has leveraged Coforma’s Health+ model to harness the power of human-centered design and research methods, drive innovation informed by data, and utilize technology to build a stronger health safety net for people affected by Lyme.

The Health+ Lyme Disease Human-Centered Design (HCD) Report articulates diverse patient experiences from diagnosis through treatment. The report’s findings are presented as in-depth patient archetypes, journeys, opportunities, and recommendations that can be used to improve the lives of those living with Lyme.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

Health+ Lyme Disease Human-Centered Design Report Articulates Four Patient Archetypes was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

By Angela Palm and Maddy Hamel

The Health+ Lyme Disease Human-Centered Design (HCD) Report, created by Coforma, articulates diverse patient experiences from diagnosis through treatment. The report’s findings are presented as in-depth patient archetypes, journeys, opportunities, and recommendations that can be used to improve the lives of those living with Lyme.

Today’s Lyme Landscape

According to the Centers for Disease Control (CDC), there are 30,000 Lyme disease cases reported annually. They also note that other data collection methods suggest that approximately 476,000 people may get Lyme disease each year in the United States. While commonly referred to as an endemic, Lyme disease has impacted patients in nearly every state, making it the largest vector-borne disease in the US.

Due to a wide variety of symptoms, people with Lyme disease are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health. There is growing frustration and mistrust from Lyme sufferers who have had their lives derailed by ineffective or inaccurate, “one size fits all” treatments.

The degree of alarm and confusion about such a long-standing public-health issue has become detrimental to Lyme patients’ outcomes and diagnostics’ progression. This stagnation leaves healthcare professionals with limited resources and tools to accurately diagnose and support patients.

Health+ Lyme Disease Project Background

Since October 2020, Health+ Lyme Disease has leveraged Coforma’s Health+ model to harness the power of human-centered design and research methods, drive innovation informed by this qualitative data, and utilize technology to build a stronger health safety net for people affected by Lyme.

Through research with patients, caregivers, leaders, and medical professionals, ongoing cross-collaboration between subject matter experts (SMEs), and an innovation challenge, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating the implementation of innovative solutions to increase the quality of life for those individuals.

As part of the Health+ Lyme Disease program cycle, the HCD Report serves to surface patient experiences, elevate their stories through accurate and aligned archetypes, and identify the challenges and opportunities intersecting clinical care touch points and elsewhere along the Lyme journey. Coforma listened to the Lyme community’s lived experiences, articulated the opportunities to address their greatest concerns, and outlined recommendations for improvements. The Health+ Lyme Disease Human-Centered Design (HCD) Report details each of these areas in depth.

A LymeX Innovation Accelerator Collaboration

The Health+ Lyme Disease program cycle is supporting the LymeX Innovation Accelerator (LymeX), a $25 million public-private partnership between the Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Coforma facilitates the Health+ Lyme Disease program, collaborating with HHS, PISTIS, CODE, and Ensemble, all the while engaging stakeholders, end users, and cross-discipline SMEs to execute the program’s component areas.

Our Approach

Beginning in December 2020, our team began its work with desk research, consuming critical papers, studies, and other key publications to develop a comprehensive understanding of Lyme disease.

Next, we utilized human-centered design research methodologies to uncover diverse patient stories and experiences. Research methods included one-on-one interviews, workshops, and diary studies conducted with patients, caregivers, leaders, and medical professionals. We conducted comprehensive recruitment for research participation across a range of demographics, such as age and gender identity. We also recruited across a variety of geographic locations, including all states in the New England and Great Lakes regions, as well as northern California.

Our research team coded the research and synthesized the findings into patient archetypes, journey maps, and opportunity areas. These key findings were then reviewed and validated within remote roundtables with key stakeholder groups who confirmed their accuracy and added additional color. The HCD Report we generated communicates the validated findings, adding the voices of those interviewed, recommendations, and more nuanced user journeys. It’s been prepared for a diverse set of audiences, including government policy makers, Lyme advocacy leaders, clinicians and doctors, Lyme patients, and anyone interested in improving the experience of Lyme patients.

“So seven-and-a-half years to get to diagnosis. And I’m at about seven-and-a-half years of treatment. I went from literally incapacitated, bed bound, housebound, completely dysfunctional … while trying to raise two children.” — Patient

Report Contents

Through our research, the Coforma team developed a solid understanding of shared challenges, key opportunities for change within the patient experience, the trends in the needs and perspectives of Lyme patients and caregivers, and the paths — including hurdles and key decision points — that patients undergo in finding a diagnosis and navigating their care coordination and treatment.

Read the HCD Report

The following report areas synthesize and reflect findings from 698 hours of discovery, including interviews, workshops, extensive desk research, and close collaboration with project contributors.

Archetypes

Archetypes are a distillation of design discovery insights meant to describe user needs, goals, pain points and habits — a communication tool that helps teams build empathy towards end users, and address all use cases. They are developed through analyzing qualitative data, and are useful when different types of users behave differently and their various use cases and needs have to be addressed.

The HCD Report outlines four distinct Lyme archetypes, including:

• Disrupted with Capacity
• Semi-Disrupted with Capacity
• Disrupted Without Capacity
• Semi-Disrupted Without Capacity

Within each archetype, patient experiences with care coordination and the impact Lyme has on their lives are detailed.

Journey Maps

A journey map is a visual representation of the patient’s experience from beginning to end. It documents the steps they take across the course of the experience, the tools and resources they use to complete certain steps, the challenges or pain points that pose obstacles along the way, and the opportunities for enhancing or improving the experience.

With Lyme, we learned that diagnosis is often delayed, causing severe, prolonged symptoms. Because there is a lack of awareness around diagnostics, appropriate Lyme treatment may be delayed, worsening the patient’s condition. To illustrate this reality, we mapped two core journey maps for Lyme patients: the diagnostic and the treatment journey for persistent symptoms. These journeys detail the varied experiences of those with Lyme in their pursuit of diagnosis and treatment.

Opportunity Areas and Recommendation

Opportunity areas were identified wherever patients and other Lyme stakeholders noted experiencing pain points in their relationship to Lyme, including along their diagnostic and treatment journeys. The main opportunity areas we uncovered through our research include:

• Broader awareness of Lyme disease
• An accelerated diagnostic process
• Cohesive and comprehensive care coordination
• Holistic life and care management

Each of these four opportunity areas includes sub-areas that are detailed in the report. Alongside the opportunities are corresponding recommendations that provide ideas for improving the patient experience at clinician touch points and other intersections of patient care and well-being.

Read the HCD Report

How This Report Can Help People

It is our hope and intention that the HCD Report will be used by government stakeholders and healthcare innovators at large to leverage findings within and across areas of expertise to collaboratively and concretely develop new, improved methods of providing healthcare, a health safety net, and an increased quality of life for individuals living with Lyme disease.

To that end, an innovation challenge will leverage collaboration, research findings, and technology to develop new solutions that directly address the challenges and opportunities identified by the HCD Report. Individuals and teams are working to develop creative solutions, ranging from marketing needs, to policy adjustments, to new technology and design prototypes.

Individuals and groups working independently from the Health+ program to develop innovative solutions using the HCD Report’s findings are invited and encouraged to share their progress and achievements with us by emailing us at HealthPlus@coforma.io.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.

Visit us at coforma.io.

Health+ Lyme Disease Human-Centered Design Report Highlights Patient Experiences and Opportunities… was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.

Coforma’s design work for the Immigration Policy Tracking Project (IPTP) placed us on Fast Company’s annual list of World Changing Ideas.

Coforma’s design work for the Immigration Policy Tracking Project has received an Honorable Mention for Fast Company’s Innovation by Design Awards for 2021 in the Social Justice category.

The awards, which can be found in the May/June issue of Fast Company, recognize people, teams, and companies solving problems through design. One of the most sought-after design awards in the industry, Innovation by Design is the only competition to honor the creative work at the intersection of design, business, and innovation.

Project Background

Beginning in October 2017, Lucas Guttentag and teams of law students at Yale and Stanford worked steadily to create a web-based tool that tracks the Trump administration’s immigration actions. New policies had been made by the administration so frequently — sometimes on a daily basis — and compounded into such a large body of hostile motions over the past four years that no individual could feasibly keep track of them. Guttentag’s team wanted to set the stage to roll back the harmful policies under a future administration. The result of this work was the Immigration Policy Tracking Project, now the most comprehensive immigration policy database of the Trump administration’s actions that has ever been created, setting the stage for policy makers to roll back harmful policies.

Coforma helped redesign the Immigration Policy Tracking Project’s web interface with real users at the center of research, design, content, development, and engineering. Coforma worked closely with Guttentag’s team to create a unique content management system that was not only clear, usable, and accessible to policymakers, but also allows the internal users (i.e., lawyers, law students, and subject matter experts) to seamlessly grow the database on an ongoing basis without forcing them to learn a complex system that doesn’t speak their language.

The updated tool emphasizes immigration reform focus areas, allows policy pros to leverage the database to reveal key aspects of interconnected policies, and uses a familiar lexicon. The tool was recently made available publicly and is now supporting President Biden’s administration’s initiatives and a more progressive future for the US.

“The work being done by Lucas and his team is crucial to undoing the damage wrought by the previous administration. We’ve already seen how difficult undoing it can be, and I can only hope we can apply what we’ve learned to other critical policy areas in the future,” said Yoni Knoll, Chief Technology Officer at Coforma.

Award judges include renowned designers from a variety of disciplines, business leaders from some of the most innovative companies in the world, and Fast Company’s own writers and editors. Entries are judged on the key ingredients of innovation: functionality, originality, beauty, sustainability, user insight, cultural impact, and business impact.

See the complete list.

Read more about this project.

About Fast Company

Fast Company is the only media brand fully dedicated to the vital intersection of business, innovation, and design, engaging the most influential leaders, companies, and thinkers on the future of business. The editor-in-chief is Stephanie Mehta. Headquartered in New York City, Fast Company is published by Mansueto Ventures LLC, along with our sister publication, Inc., and can be found online at fastcompany.com.

About Coforma

Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together. Visit us at coforma.io.

Immigration Policy Tracking Project Design Receives Honorable Mention for Fast Company’s World… was originally published in Coforma on Medium, where people are continuing the conversation by highlighting and responding to this story.