Inclusive Design for Sickle Cell Warriors

When it comes to accessibility and inclusive design, we tend to focus on specific abilities and conditions. For instance, using colors with adequate color contrast for people who have low-vision or in less-than ideal lighting situations. But inclusive design requires more than an awareness of different disabilities and appropriate design considerations. We need to also include people who experience layers of health, environmental, and social barriers.

Intuit’s Accessibility and Inclusive Design team has been researching design considerations for people with Sickle Cell Disease (SCD), also known as Sickle Cell Warriors. Sickle Cell Warriors are brave fighters that endure incredible pain, fatigue, anxiety, disrespect, racism, and ignorance. We have collected key insights for inclusive design with the help of Hertz Nazaire, an artist, activist, and community leader.

Hertz Nazaire in his studio

Nazaire’s art redefines the representation of pain and hope. He’s also created a series of waiting room furniture to let people know they are not alone.

Waiting room chair by Hertz Nazaire

Sickle Cell Disease

The average red blood cell slips through our capillaries, veins, and arteries distributing oxygen and nutrients throughout the body. With Sickle Cell Disease, a rare genetic condition, red blood cells can transform from round and flexible to folded and sticky; blood cells no longer flow easily and create blockages. These blockages prevent the body from passing oxygen to affected areas, causing tissue damage, swelling, and excruciating pain. Sickle Cell Warriors experience a wide range of conditions, including anemia, retinopathy, spleen damage, and a compromised immune system.

Comparison of blood flow with normal and sickled red blood cells

Aside from the medical symptoms, Sickle Cell Warriors also face societal barriers based on lack of empathy, socio-economic, and racial discrimination. Many are treated poorly when they visit the emergency room, as they don’t show physical symptoms for their pain and are disregarded as seeking pain medication for an addiction. This can lead to self-management of pain, as one person remarked, a visit to the emergency room can be a compromise between death and dignity.

Pain

The pain caused by a blockage is intense, debilitating, and long lasting.

Pain is a suffering. Suffering is a torture.
Pain memory sticks with you long after the crisis.
It causes Post-Traumatic Stress and anxiety.
- Hertz Nazaire

Yet the emergency room experience can be so traumatic that 78% of Vaso-Occlusive Crisis events are treated at home. People do not seek help until they’ve exhausted their options. Upon arrival, treatment for pain relief is critical, they don’t have energy for filling out intake forms, answering unnecessary questions, and proving their pain is real.

Marissa Cors wrote about this in her essay: When I Feel Like the Most Hated Patient in the Hospital

Every time I go to the ER, I have to brace myself for the insults, conversations, discrimination and disrespect I’m going to have to endure — all while attempting to get the healthcare I greatly need.

While Sickle Cell Warriors share many of the symptoms of diseases often discussed within Inclusive Design studies: arthritis, diabetes, chronic fatigue, cancer, and chronic pain; they also experience unique social barriers. Rather than suppose the experience of a person with arthritis can suggest how a person with SCD interacts with a web application, we can learn much more about the intersectionality of symptoms and socio-economic factors by increasing our knowledge of this disease and the community of Sickle Cell Warriors.

Hertz Nazaire explains different complications due to Sickle Cell Disease, assistive technology, and the complexity of living with the disease.

Inclusive Design

To explore design considerations for SCD, we started with a generic patient entry form. Many Warriors have encountered a similar form, especially when traveling and not able to access their primary hospital. This form is introduced at a time of great stress and pain. Our goal was to transform it into an ideal form and share what we’d learned in the process.

Hertz Nazaire explains why this generic entry form would be irrelevant for a patient experiencing a pain crisis. The pain is too bad for them to read and fill out a complex form, especially when it includes information that should be captured after the treatment. The form should emphasize the Warriors pain crisis, best treatment, and primary physician contact.

Nazaire rejected the argument of designing a patient entry form to research user experience, rather we should focus on the holistic process of receiving treatment at a clinic. With this in mind, we pivoted to designing a form that could facilitate immediate treatment with due respect.

Generic patient form and specialized form for Sickle Cell Disease

Focus on the purpose

A generic patient entry form is inappropriate for someone visiting a clinic with an emergency pain crisis. This is a barrier to treatment, not a facilitator. Nazaire commented “Get me relief now, fill out the information later.”

Instead, there should be forms created specifically for diseases and traumas. For instance, a patient with Sickle Cell Disease has different treatment requirements than someone with severe vestibular migraines. These forms should be simple to complete, yet contain the critical information needed to contact the primary physician and start treatment as quickly as possible.

Remove Extraneous Information

The original form placed a high emphasis on the “Guarantor”, which placed the hospital’s reimbursement above the patient’s needs. Why is the hospital asking for an emergency contact? Nazaire mentioned this is often used to identify another payment source, not for health-related contact.

Respect your customer’s expertise

People want to be treated better. They want to be respected for their self-advocacy, believed for their pain levels, and the seriousness of the crisis.

Sickle Cell Warriors know their bodies. They know what helps and what is ineffective. Respecting your client’s expertise will facilitate faster treatments and problem solving. Our updated form provides ample note sections for the Warrior to describe their current crisis and the ideal treatment. Medications impact people differently, so it’s important to know which are effective.

Your customer may not be using your design.

A person experiencing a crisis is not in a state where they could read and fill out the form. They are in terrible pain, their eyes are watering, squinting, they may be curled up trying to remain motionless, and doing whatever it takes to avoid additional pain.

While the patient may have the best knowledge of their medication, medical history, and symptoms, the form would be completed by an advocate or hospital staff. The updated form was designed for a caregiver to ask questions and receive quick responses from the patient.

· Put the critical information first.

· Use simple language and target a readability of 5–6 grade level. For instance, “What works for your pain?”.

· Use checkboxes or selections instead of open text.

· Test your designs by reading them aloud. Use words that are easy to pronounce.

Inclusive Design Summary

You’ve explored the unique requirements of Sickle Cell Warriors and how a generic patient entry form was inadequate. Incorporate the following guidelines in your inclusive design process to embrace all of your customers.

· Include Warriors in customer research, diversity is critical for your success.

· Focus on your customer’s purpose

· Optimize their experience, not yours

· Trust your customer’s expertise

· Your customer may not be the person interacting with your design

· Use simple language

· Don’t ask for non-essential information

· Follow design standards for vision, cognitive, and mobility

Learn more about Sickle Cell Disease

· This Podcast will Kill You — Sickle Cell Disease — Two epidemiologists present an excellent summary of the disease, its history, treatment, genetics, and symptoms.

· Cheat Codes: Two SCD doctors interview researchers, physicians, and people with the disease.

· Living LaVida: audio journal from a warrior

· The Sickle Cell Podcast: from Sickle Cell 101

· Perfectly Sickled: Liliane Rebecca is a lawyer who explores issues related to Sickle Cell Condition (she avoids calling it a disease).

Illustrations by Joyce Lee, QuickBooks Commerce Senior Designer, Intuit