Designing for the Greater Good

How to embed ethics into your design intent.

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What has historically been viewed as one of our most closely held secrets — our health data — is now being tracked, analyzed, and shared in ways we wouldn’t have dreamed of just a few years ago. While there are many benefits to sharing our health data, there are also risks.

We can now use data about our ancestral lineage to find out if we’re genetically predisposed to serious health conditions — but insurance companies could use this same information against us. We can track our own heart rate, how many steps we take a day, and other health metrics. But by doing so, we could also be giving up our right to our own data and putting it in the hands of companies whose primary concern is the bottom line, not our health.

While ethical concerns like these exist in all applications we develop and design, they become heightened when applied to healthcare specifically — because the risks to society are greater. There are no easy answers to the ethical questions we face. However, by looking at some of the thorniest issues in healthcare app design, we can begin to piece together a set of ethical guidelines that everyone should be considering.

Start with transparency

“The value is with the relationships you build with customers and the trust they have in you. If you lose their trust, you lose everything, including your profit base. That’s why it’s important to focus on ethics and trust first.” —Andy Vitale, Director of User Experience, Wholesale Banking at SunTrust Bank, and Former Design Principal of User Experience at 3M Health Care

Trust is a key component of getting others to engage with any product you design and should be a leading consideration in your design and decision-making. To build this trust, it’s critical to establish transparency. This includes sharing with your customers how you will collect, store, and use data.

However, many healthcare applications are failing to achieve trust with their customers. In a recent Accenture survey, tech companies that develop health apps were the second least trusted source for protecting health data. Meanwhile, physicians and other healthcare workers were highly trusted. Given that many healthcare apps aren’t providing transparency in how data is used — or even collected — this lack of trust isn’t surprising.

In a 2016 study published in the Journal of the American Medical Association (JAMA), 81 percent of the 211 diabetes apps studied did not have a notice informing consumers about their privacy practices. Even for those apps with privacy policies, less than 10 percent (just 4 apps) said they would ask users for permission to share data — even though 80 percent collect user data and 49 percent share that data.

A lack of transparency, such as shown in the research above, doesn’t only hurt the consumer — it can also hurt designers. When customers don’t feel confident you are protecting your data, they will likely look for another application that can solve their problem and also earn their trust.

A secure design is an ethical design

Protecting customers’ data is an equally important way to earn trust. Outside of protecting against data breaches from cyber criminals, an ethical design should also consider how to protect the employee or customer using your app from their own lack of security mindfulness.

Vitale says he has seen situations where healthcare data was unintentionally not safeguarded properly by employees. But, he notes that part of the problem is often with the app’s design. “When the technology doesn’t support the end users’ needs, they often try to find workarounds,” says Vitale.

In a recent survey by HIMSS Analytics as reported on in the HIPAA Journal, the biggest healthcare data security risk is a lack of employee security awareness. An overwhelming majority — 74 percent — of those surveyed said employee security awareness was one of the main concerns regarding exposure to threats.

By identifying these types of “human” security risks, an ethical design can and should find ways to reduce the risk. In Vitale’s case, he and his team realized that medical coders needed to be able to collaborate on the data. So they built a tool that fostered collaboration within a closed system, ensuring that private data would not be exposed.

Make design a co-creation process

Another ethical concern is design bias. There can be a significant tension between the goals of improving health and generating profit — and this can affect the design choices we make.

A private-sector example of design bias is the Volkswagen algorithm that allowed vehicles to pass emissions tests by reducing their nitrogen oxide emissions during tests. Researchers at the Stanford School of Medicine believe something similar could happen in healthcare. Designing around the goal of saving money, for instance, may create bias in an algorithm — so that treatment recommendations become based on patient insurance status or ability to pay rather than the best treatment option for that patient.

Collaboration with stakeholders and customers during the design process can help to re-center the design intent on what the real problems are and how to solve them. It also helps to place more accountability into the design process. In the case of Volkswagen, for example, if emission technicians who would be testing the cars had been part of the design process, it’s a lot less likely an algorithmic “cheat” would have been the outcome.

Design for good

Doctors have a Hippocratic Oath with the mandate to “first, do no harm,” to help ethically guide their decision-making. No such guidance currently exists for designers and decision-makers of AI and machine learning technology. However, we believe that a similar type of framework can be created where designers can pledge to “first, do no harm” by doing the following:

Are you ready to raise your hand and take the oath?

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