How Human-Centered Design Has Shaped The Congressional TrumpCare Debate

How Human-Centered Design is Shaping the Congressional TrumpCare Debate
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Allison Murphy (Ally) co-authored this article. She is passionate about the impact of social enterprise on international development and conflict resolution. Ally has interned with Interpol, Third Sector Capital Partners, Fresh Truck, and YMCA. She graduates in December from Northeastern University, where she was Events Director for IDEA, a student-led venture accelerator, and COO for the Center of Financial Independence. In her spare time, she loves insta-blogging about health and wellness.

It’s no secret that people in America aren’t happy with their government experiences—a recent Mckinsey study revealed that overall, U.S. citizens are most happy with their experience at the grocery store, and least happy with their experiences with the government. When you have to file tax extensions through snail mail, instead of online, for multiple states, you would be annoyed. This becomes even more exacerbated when Congress attempts to pass legislation that could discontinue healthcare benefits for 25 million people, even though logically it could yield cost savings, reduce our massive US deficit. How heartening!

But here’s the good news: the recent debate on the future of the healthcare reform revealed that citizens have the potential to take control over their sometimes dissatisfactory government experiences and actually have a say in shaping policy. Jimmy Kimmel, someone with no real policymaking power, is the perfect example of this. His impassioned plea about the impacts of healthcare repeal on his son’s life threatening heart condition was so successful in delivering a message to Congress that “the Kimmel Test” became a standard of decency for any newly proposed legislation. The public’s response to this statement was so overwhelming that the term ‘The Kimmel Test’ was coined. It has since been used frequently in the Congressional TrumpCare debate as a baseline for standards of decency in proposed legislation.

At the end of June, Republican Senator Bill Cassidy of Louisiana was quoted as saying "I ask, does it pass the Jimmy Kimmel test? Will a child born with congenital heart disease be able to get everything she or he would need in the first year of life? I want it to pass the Jimmy Kimmel test.” Pretty remarkable that the words of guy with no real policy making power whatsoever could become so central to a Congressional debate.

So as grueling as the healthcare debate has been, one of things we should be proud of is this: No matter what side of the political aisle you rest on, our congress debated ACHA in some of the most productive and effective ways ever. They listened to citizen feedback and framed debate in those terms. We were pretty impressed with congresspersons — from both parties — using human-centered design to get across their points in open session, which made us proud to be Americans and to live in a representative democracy.

The framing of the ACHA debate is what makes us proud to be Americans? Seriously!? We know, we know. You’re probably thinking we’re nerdy lunatics who have never tried a cheeseburger or watched fireworks on the Fourth of July. But hear us out!

In terms of policy issues, healthcare actually lends itself particularly well to human-centered design because, whether we like it or not, sickness affects us all at some point in our lives. Unfortunately, since the passage of the Affordable Care Act in 2010, debate on the topic has been marked by intimidating levels of complexity and wonky insurance jargon. True, the US healthcare system is an elaborate beast. This is why we loved renowned Doctor Atul Gawande’s piece in The New Yorker, “Trumpcare V. Obamacare”—because it broke down a complex and grueling debate into clear and meaningful terms. So it was exciting, then, to see human-centered strategies of debate employed by so many Senators and Representatives — on both sides of the aisle! — during the recent debate on Trumpcare.

Human-Centered Design: An Overview

But hold up, what is human-centered design? In the simplest terms possible, it’s a strategy of problem-solving that focuses first and foremost on the needs of the people most affected by the problem being solved. Originally popularized by the user experience and product design industries, the interdisciplinary principles of HCD have recently fanned out to influence everything from healthcare and education to policymaking.—the nonprofit subsidiary of leading design-thinking firm IDEO—effectively outlines the use of such “human-first” problem solving tactics for the social sector. The process involves inspiration, ideation, and implementation. Pretty simple! But the catch with HCD is that at every step of the process, you’re making sure your product still aligns with the needs of your target community.

See, it’s not rocket science!

In the recent rounds of debate on the ACHA, we saw Republicans and Democrats alike work not to implement a new system, but to improve the one we currently have. That means we’re in between the ‘ideation’ and ‘implementation’ sections of the chart below. This is because Republicans and Democrats alike recognize that as it stands, the law has many shortcomings that need to be addressed in order to better meet the needs of those it serves. This is where the circling back we discussed earlier comes into play! No matter which side of the ideological spectrum you fall on, most suggestions for the improvement, repeal, and replacement of the ACA are based on different perspectives regarding what is the best for the American people. Some believe improvements will come through repeal; others believe that though there’s work to be done, keeping the ACA in place as it currently stands is the best path forward. Here are the ways we saw Congress and various NGOs frame debate on the ACHA in terms of their constituents.

Examples of HCD Methods Used by Politicians, NGO, and Civil Society

As an outspoken opponent of TrumpCare, Senator Cory Booker argued his case for the American people by visually mapping the effects of the proposed replacement plan in the short video below which he tweeted out to his followers in early May:

In doing so, Senator Booker made the topic of healthcare reform more accessible to his base by vividly outlining the anticipated effects of the new bill. More importantly, he framed his whiteboard video entirely in terms of the citizen’s perspective, going so far as to capitalize every letter of the word “YOU” on the left side of the chart. At the start of the video, he accused House Republicans of “malfeasance” because they had not submitted their bill to the Congressional Budget Office. But it’s not this operational shortcoming he was worried about; his worry laid with the welfare of the American people. We saw this same strategy employed countless other times as the bill made its way through the House. The debate focused less on procedural flaws and instead emphasized the human experiences constituents might face as a result of the bill’s passage. This goes back to what we mentioned earlier; the use of visualization and storytelling begins to make them view the debate in terms of themselves and those they love, not solely in terms of a complex and distant policy debate.

Unsurprisingly, the NGO world took to highlighting specific examples of how the replacement plan would affect the populations they serve as well. They did so not only to apply pressure to the leaders responsible for passing the bill, but also to make the debate even more personal by reaching specific groups of people with specific sets of concerns. The Planned Parenthood Protest, which used the popular Amazon series The Handmaid’s Tale to boldly demonstrate prove their point that TrumpCare was waging a war on women, made the debate relevant not only to current supporters of the organization, but to popular culture at large.

Similarly, the national disability rights group ADAPT protested outside of Senate Majority Leader Mitch McConnell’s office to make clear their belief that the new healthcare plan discriminates against people with disabilities. ADAPT’s actions on Capitol Hill reached not only their community of followers, but also the general public as videos of protesters—some in wheelchairs—were seen forcibly dragged away from the Majority Leader’s office.

Other citizen-run campaigns, such as Our Stories, Our Lives, began collecting and sharing the stories of real Americans who would be affected by various changes in the ACA. For example, Harvard grad Sara Groh, who was introduced by Senator Warren at a rally in Massachusetts, also shared her own story of how the ACA benefited her family. And, former Obama Aide Alejandra Campoverdi shared her own health story.

Using the tools available to them, individual citizens took to social media, contacted their local representatives, and attended town halls to express their concerns about the proposed legislation. Public protests like these inherently make use of one of the most important methodologies of HCD—receiving feedback, like the community gave Rep. Fred Upton in Michigan. The feedback was not necessarily invited by GOP members of Congress, but it’s a testament to HCD nonetheless for its value in providing lawmakers real perspectives from the people their laws aim to serve.

So what does all this mean and why does it matter? It means that an important shift is underway in the policymaking world—one that has been a very long time in the making. Citizens are finally having a direct say in the policymaking process. Instead of the government bringing in experts to speak on behalf of citizen experience, citizens themselves—by way of NGOs, interest groups and town halls—are driving policy reform. It comes down to this: when debate is human-centered, decision-making engages actual citizens.

It’s important to note though that our government has always tried to design policy with American citizens in mind. People with expertise and (personal) experience have frequently been brought in by our government to provide testimony that could shape a bill. In addition, congress has developed systems to allow citizens and companies to comment on bills (i.e. And that’s what we’ve been seeing in the ongoing debate on the future of healthcare. That’s what has us so hyped about the way this debate has been unfolding.

Call to Action

We’re lucky to live in a country that affords us the luxury of representative government. But while designing policy with citizens in mind is great, it has its limits. The one thing that’s even better? Designing policy with direct citizen engagement!

Now more than ever, we have the tools as citizens to be connected to government officials and to make our voices heard on the issues closest to us. When our voices are loud enough, government officials can leverage our opinions and frame policies with human-experience in mind. We the people are involved; we the people are engaged; and we the people might actually have a say in the next iteration of healthcare reform. And considering the many sources of government grievance that citizens deal with daily—we’re looking at you, snail mail—this is a shift we’re beyond excited to see happening!

Framing policy in terms of the ways in which it’s experienced has the ability to greatly improve citizen service delivery. It might not taste better than a juicy burger on the Fourth of July, but it’s just as American!

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