I had the honor of participating in the NSHE Southern Nevada Diversity Summit yesterday. There were amazing keynote speakers, Eric Deggans and Haben Girma, and sessions focused on strategies to advance institutional equity, intercultural education, and promote access and success for individuals from diverse identity groups in higher education. This year’s theme was “Embracing Community Care: Higher Education’s Role in Addressing Health Inequities,” so I couldn’t resist the opportunity to spread the word about our UNLV Down Syndrome Program. Program Coordinator, Samrawit Misiker, co-lead an interactive group discussion that started with a brainstorming activity. We asked the attendees how they would improve their own healthcare experience. After writing everyone’s responses on a whiteboard, it didn’t take long to realize that our audience members wanted the same things we had heard previously from individuals with Down syndrome and their families: more coordinated care, better communication with healthcare providers, and help navigating insurance coverage, to name a few. Making the most of healthcare shouldn’t be so hard! We should all get to reap the benefits of our technological advancements, evidence-based practices and receive compassionate care. Being part of a diverse and expansive university like UNLV provides enormous potential for change that can have a positive impact on our community and beyond. Here’s to a better healthcare system for all of us, healthdesignthinkers.
Three weeks ago we celebrated our nation’s Independence Day. Today we’re here to rejoice in and celebrate another “independence day,” one that is long overdue. With today’s signing of the landmark Americans for Disabilities Act, every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom.
President George H. W. Bush at the Signing of the Americans with Disabilities Act July 26, 1990
This year we celebrate the 32nd anniversary of the Americans with Disabilities Act. What an important piece of legislation, which prohibits discrimination against people with disabilities in several areas, such as transportation, employment, accommodations in public spaces, communications and access to state and local government programs and services. And, as far as we’ve already come, there is so much more work to be done.
As the Covid-19 pandemic continues, accessible at-home tests for people who are blind or have low vision are finally available. Spread the word! 🙂 And, according to Harvard Business Review, the telehealth era is just beginning. Virtual visits may have been popular during the peak of the pandemic, but they continue to offer several benefits, particularly to people with disabilities, like increasing access to specialized healthcare providers, avoiding exposure to contagious infections to vulnerable individuals in crowded waiting rooms and removing the need for transportation to a distant clinic. These are just a few examples of ideas that can promote better health outcomes for everyone, including those with disabilities, in our communities.
Using your human-centered design super powers, what ideas (Step 3 – Ideate) do you have that would help celebrate this year’s anniversary of the ADA?
You’ve probably observed a situation that needs to be improved in your daily life. Perhaps you’ve even identified a gap between the current state (the problem) and the desired state (the goal) of a process or a product. Maybe it’s the current wait time until the next episode is released in the latest streaming series that you can’t get enough of. Or, you have an idea that would bring back your favorite pizza. Wait, that one is already taken? No problem. It’s time for a design challenge.
It’s your turn to make something happen. Are you ready?
Health design thinking involves putting your ideas, information, observations and anything else that matters into the context of a human-centered problem statement. Think of a human-centered problem as an unmet need in someone’s life. Here are some examples, from the user’s perspective:
I am a wheelchair user and my health is important to me. At each visit, my doctor’s office asks me how much I weigh instead of checking it like they do for other patients. This makes me frustrated and feel like they don’t care as much about me.
I have Down syndrome and work at my neighborhood grocery store. I would like to be treated like anyone else my age. However, people talk to me like I’m a little kid. Even my doctor does it! This makes me feel like people underestimate me.
I was diagnosed with attention deficit hyperactivity disorder (ADHD) in elementary school and I’m in college now. Sometimes I have difficulty concentrating. It affects me during conversations with my doctor. I understand better when there are visuals/diagrams provided. However, I feel like people will think I’m not intelligent if I ask for help.
A good problem statement produces a clear statement of the issue that the designer seeks to address, maintaining the focus on the user at all times.
So, now that you know how to develop a human-centered problem statement, you, too can say, “challenge…accepted!”
In order to get to new solutions, you have to get to know different people, different scenarios, different places.
Emi Kolawole, Editor-In-Residence, Stanford University d.school
Empathy is the ability to step into other people’s shoes, to understand their lives, and start to solve problems from their unique perspectives. Human-centered design is premised on empathy, on the idea that you’re designing for are your roadmap to innovative solutions. You empathize, understand them, and bring them along with you in the design process. (Source: IDEO.org. (2015). The Field Guide to Human-Centered Design. IDEO.org.)
If I wanted to design a more human-centered wheelchair, I would start by talking to a current wheelchair user about the obstacles they encounter on a daily basis and what they think would make things better. I might try to maneuver around in a wheelchair myself to get a first-hand perspective of some of the issues. In fact, I did just those things when helping my brother select a new wheelchair a few years ago. His old one kept breaking down and the foot rests were hitting into the ground. If I was the designer, I could bring my prototype back for the future user’s consideration and make changes based on their feedback. Adding empathy to the design process takes it to a new level, specifically a concept known as co-design. Wouldn’t it be great if we could co-design everything? Think of how much more human-centered the world would be.
The COVID-19 pandemic exposed significant gaps and design flaws in our healthcare system. Long-standing health disparities acutely worsened in vulnerable populations and the need to address them became even more important than ever. Problem-based learning, commonly taught in medical schools, engages students in a subject by working through a poorly-defined problem. Design thinking is a way to develop and promote creativity in the problem-solving process. Health design (a form of human-centered design) takes on the complex social problems often encountered in healthcare.
There are five stages to the health design thinking process: (1) empathize, or exercise the ability to step into other people’s shoes, to understand their lives, and start to solve problems from their perspectives; (2) define – the problem you would like to solve; (3) ideate – AKA idea generation, to find new solutions from the user’s perspective; (4) prototype creation, or map out the most important ideas to propose a solution concept; and (5) test the prototype, incorporating feedback from the user. Note that design thinking is a non-linear process, as depicted below. You can go forwards, backwards and in between!
Now that you have learned the stages of the health design process, what problem in healthcare would you fix, and better yet, how would you start? Send your health design thinker superpowers to the rescue!
World Down Syndrome Day (WDSD) is on Monday, March 21st. It is a day to raise awareness and advocate for the rights of people with Ds. The United Nations officially declared the 21st of March as World Down Syndrome Day in December 2011. The date of March 21st was chosen because Ds is caused by 3 copies of the 21st chromosome.
How can you celebrate WDSD?
Get your socks on! – Socks are shaped like chromosomes, and have become a symbol of support for people with Down syndrome on WDSD. Wear some bright and mismatched socks on Monday to show your support. When someone asks about your socks, help educate them on the topic of Ds. You may also join the #LotsofSocks campaign on Instagram to help raise awareness by using the hashtag.
Advocate – This year, the theme for WDSD is inclusion. Help advocate for the inclusion of people with Ds by answering “What does inclusion mean?” on social media using #InclusionMeans and #WorldDownSyndromeDay.
Attend the 11th WDSD Conference – The United Nations headquarters in New York is hosting a virtual conference to explain what inclusion means. This event is on Zoom, and consists of separate sessions from 8am until 12pm PST on WDSD. Register to attend here.
You can also participate in WDSD to help raise awareness locally. This past year, Southern Nevada has seen a rise of organizations specific to Down syndrome, including the establishment of our very own Down Syndrome Program at the University of Nevada, Las Vegas (UNLV).
What are some ways you can be a health design thinker and raise awareness about the vulnerable populations in your community?
Shout out to the legendary Simon Sinek; it seemed only fitting to begin this blog with my WHY, or “the purpose, cause or belief that drives every one of us.” I grew up alongside my intellectually and physically disabled brother, Michael. I wrote about that experience and how it shaped my career in academic medicine in this JAMA opinion piece. Although my brother passed away two years ago, he permanently opened the door to a world I would not have otherwise known about.
As a physician, I aim to promote the health and wellbeing of everyone. However, the current US healthcare system was not designed to meet everyone’s (or anyone’s) needs. Sometimes I wonder if patients were a mere afterthought. It can and should do so much better. People living “at the margins” often end up struggling to pay for their medications each month. Many also can’t see a doctor. Physicians don’t accept or limit the number of patients they see who have publicly-funded insurance such as Medicaid and there’s a significant doctor shortage, as exemplified best in my state of Nevada.
The Covid-19 pandemic further exposed the chasms in an already fragmented and inequitable healthcare system. It might seem easy to look away as you try to resume a normal post-omicron existence. Then again, if the Covid experience taught us anything, it’s that we’re all vulnerable. As Martin Luther King, Jr. famously stated, “Injustice anywhere is a threat to justice everywhere.”