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Health Experience Design Recap: Bringing Equity and Empathy to Healthcare

Mad*Pow’s annual Health Experience Design conference emphasizes the potential of better system design, responsible technology innovation, and increased patient inclusion to bring meaningful change to the healthcare system.

At HXD, speakers from diverse personal and professional backgrounds share their real-world expertise – and their own stories – about the many challenges they face to obtain, receive, deliver, or pay for care that truly puts patients’ needs first. Beyond simply pointing out these problems, though, the discussions at HXD offered examples of practical solutions.

This year’s HXD conference touched on a number of key themes, including equity, empathy, literacy, decision support, and language. Here are some highlights from the sessions and discussions.

Equity: Accompany Patients on Their Journey

Design that’s implemented with the best of intentions can fall flat if it fails to account for the needs of all patients beyond the “normal” or expected user. Sara Wachter-Boettcher, principal at the content strategy firm Rare Union, called out a number of examples. A “smart scale” that only offers positive feedback when someone loses weight, or the short-lived cupcake-themed calorie counter in Google Maps’ walking directions, assume that all patients are trying to lose weight, when it would in fact be quite unhealthy for some patients to do so. Meanwhile, a period-tracking app with a feature to “keep him in the loop” assumes that a user has a male partner. 

The clear solution in these cases is to speak directly with patients, not to them or at them, to gain better perspective and insight into their needs as well as their goals. This is especially true when patients are receiving clinical care or social services from disparate and non-integrated systems, noted Deborah Brown, Chief Strategy and Innovation Officer for health within the Office of the Deputy Mayor for Health and Human Services in New York City. Otherwise, clinical staff may prescribe medication or refer services that patients already receive – or, more likely, they may miss an opportunity to close a care gap or address an unmet need.

Dominque Goodson and Latrice Peterson, representing the community of patients with sickle cell disease known as the Sickle Cell Warriors, pointed to the importance of reaching out to patients in order to understand what it’s like to live with a chronic condition. By accompanying patients on their journey through treatment, a clinical trial, or simply managing everyday life, healthcare stakeholders can shift from making assumptions about what patients need to learning firsthand about those needs. This becomes more important as hospitals, health systems, and insurance companies begin to address non-clinical social determinants of health that can’t be gleaned from lab tests or questionnaires.

Empathy: Inclusive Language, Shared Decision-Making

Simply including patients isn’t enough, though. Healthcare design must be more empathetic to those patients – their symptoms (both seen and unseen), the pressures they face (both at work and at home), and the uncertainty that lays before them.

Language is a key component of empathy. The document that includes information about a patient’s symptoms, illnesses, injuries, and medical history is referred to as a “problem list.” Such a term implies that patients are at fault and need to be fixed and not treated, noted Julie Rish, clinical psychologist and director of design and best practice for Cleveland Clinic’s Office of Patient Experience. Put another way: Hospitals need to think about how to design on behalf of patients, not just the health system itself.

Shifting to shared decision-making from a more paternalistic approach to practicing medicine is one way to think about designing healthcare on behalf of patients. Shared decision-making will help patients feel included, engaged, and activated in their care, said Alan Manning, Executive Vice President at Planetree, a nonprofit that helps organizations around the world focus on providing more patient-centric care. Involving patients in care decisions that directly impact their personal health and wellness also allows organizations to demonstrate a commitment to improvement, Manning added – and not just a commitment to change.

For many people with chronic conditions, empathy (or a lack thereof) is about more than care decisions, though. It also extends beyond the hospital and deep into everyday life. In her theis research, Krystal Sarcone, a recent MPA recipient from Brown University, discovered that patients with chronic conditions who want customized clothing (to accommodate medical devices or cover physical abnormalities, for example) often must buy it from the same websites that sell bedpans and colostomy bags. This deprives these patients of the dignity of buying clothes from online retailers like everybody else does. (What’s more, online retailers make it difficult to filter clothing options by features that matter to chronic patients – not just custom sizes but buttons, zippers, elastic bands, or even pockets.) To address this need, Sarcone has founded a startup that aims to provide “adaptive apparel,” as well as an improved shopping experience for customers who are otherwise marginalized.

Literacy: Understanding Care, Technology, and Finance

Along with increased empathy, increased health literacy plays a critical role in improving the patient experience. It’s especially important to address health literacy for patients with chronic conditions, as they often must manage their conditions – and their everyday lives – outside the four walls of the hospital.

There are several components to health literacy, including clinical care, technology use, and finance.

According to the Department of Health & Human Services, 88 percent of patients have poor health literacy; this lack of proficiency affects all ethnicities, age groups, and income brackets. Improved understanding about how the body works, how to interpret vital signs, or what a diagnosis means is directly linked to better understanding of a health condition – along with better clinical outcomes and better quality of life. Marli Mesibov, Vice President of Content Strategy at Mad*Pow, referred to the National Action Plan to Improve Health Literacy, which includes specific recommendations for making health and science education resources more readily available to the populations that need it. One key point: Recognize that patients often receive this information in a time of crisis – after a diagnosis or traumatic event – and will understandably be hard-pressed to interpret clinical jargon or terminology pulled from medical textbooks.

Liza Hoffman, the mental health care partner lead for the Cambridge (Mass.) Health Alliance, said it’s important to look for technology that’s easy to use and has a clear benefit to populations in need. CHA will recommend free, clinically validated, and evidence-based mobile apps for patients who schedule an appointment with a behavioral health professional, since patients may have to wait several weeks to see someone. These apps emphasize mindfulness, relaxation, stress management, and relaxation; the aim is to help patients manage their symptoms, first while they wait for their appointment and then while they’re in-between appointments.

At a time when deductibles, premiums, and out-of-pocket costs continue to rise, and when medical debt is the top cause of bankruptcy in the United States, healthcare stakeholders must be sensitive to the financial pressure that patients may face when deciding whether (or not) to receive care. Concerns about health lead to concerns about money, which increases stress and impacts health, noted Jane Sarasohn-Kahn, founder of THINK-Health the Health Populi Blog. Breaking this cycle – and getting patients to trust healthcare providers and insurers the same way they trust consumer brands such as Sephora or Wegman’s – requires a combination of transparent pricing, readily available health savings options, improved access to credit, a simplified and sympathetic billing process, and a rethinking of health insurance enrollment.  

Design: A New Approach to Design Thinking

Accomplishing these systemic changes in healthcare – not to mention many others – requires a new approach to design thinking. Speakers from Mad*Pow shared their perspective on how organizations can improve the design process to better align with more patient-centric goals.

Since patient journeys through the healthcare system are not linear, with steps in many directions, it’s important for journey maps to accurately reflect how patients get from Point A to Point B – and not just that they arrive at Point B. What’s more, since each patient’s path is unique, a journey map should focus on creating a new journey, not replicating an existing one, said Jen Briselli, Managing Director of Experience Strategy and Design at Mad*Pow. What’s the best way to do this? An interactive journey map which allows research insights to be embedded at each step of the journey, not just presented as footnotes. It also allows for the use of multimedia resources, and is easier to share among large or disparate organizations.

Granted, achieving change and innovation in large or disparate organizations is no small task. One key reason, according to Adam Connor, Vice President of Organizational Design and Training at Mad*Pow, is that people are unlikely to change on their own; they need a reason to change. In addition, the reason for the change is often based on a framework or mission statement that only captures a single moment in time, as opposed to the big picture; plus, the collaboration necessary to bring about change requires a delicate balance between hearing all points of view and making a single decision. Ultimately, innovation occurs when organizations see things through to completion – and allow it to continue once the initial process has ended.

After HXD: Design Challenges and Conversations

During the conference, Mad*Pow’s Center for Health Experience Design (CXHD) announced its latest design and innovation challenge: Benefit Selection for Financial Security. Done in partnership with Commonwealth, this challenge seeks to help low-income workers better understand the insurance open enrollment process, and protect them from the financial hardships of high healthcare costs. Anyone interested must complete an Intent to Participate form by July 27; submissions are due Sept. 25.

CHXD Director Kathryn Hautanen also announced the new CHXD community. Here, attendees of the HXD conference can view presentation materials, connect with fellow attendees, build a network focused on improving healthcare, and continue the conversation in the months after the event.