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The Rewards – and Surprises – that Come with Patient-Centered Design

By Sarah Reines

Blue Note Therapeutics was founded with a commitment to involving patients in every step of its work to develop online mental health treatments for cancer-related distress. But what does that mean, exactly?

The Rewards – and Surprises – that Come with Patient-Centered Design

“Patient input drives our product design process, but beyond that, the patient voice is at the center of our company,” says Mike McKinley, head of product development at Blue Note. “Because we consider the patient voice essential to making good products, in the last 18 months, we’ve partnered with more than 100 patients to create our early treatments, including Covid Cancer Care. We’ve solicited a broad range of perspectives on everything from the look of our online treatments, to the language we use, to the real-life situations we incorporate to demonstrate different approaches for reducing stress and anxiety, to the interactive features that keep patients coming back for more.”

“Patient input drives our design process.”

Blue Note’s empathetic design approach is different than that taken by many other health care companies. “In my years of health care product development, I’ve seen too many instances in which patient input was not central. As a result, companies ended up with treatments that reflect what a bunch of smart people think patients want, versus what they actually want,” McKinley says.

Not only does Blue Note make sure that it is soliciting feedback from a diverse group of patients representing different genders, races, ages, and cancer types, but it has a sustained relationship with a small but representative group of patient advisors who directly partnered with product developers to craft and refine each frame of its online treatments including Covid Cancer Care.

“In the past, I’ve worked with patients and patient advisors, but those tended to be more formal and limited interactions like focus groups,” says Sharif Ezzat, creative director at Receptor Studio, a design firm that has been working with Blue Note to create some of its early interventions. “One of the key differences here is working with a tight-knit group for a sustained period.”

Ezzat describes the advantages of working weekly with this small group of patients, whose recommendations were then run past other patients for validation. “It kept the pressure on us, I’d say not only in terms of making sure that the product got more dialed in to serving the community that it’s made for, but also in terms of the actual development timeline. It forced us to work rapidly, to be ultra-focused and also maintain a big-picture sense.”

Both McKinley and Ezzat say that patient input made its online treatments better. For instance, it was due to consistent patient feedback that a virtual support group was incorporated into an upcoming treatment. “That was challenging from a timeline standpoint, but we heard so consistently that patients wanted to engage with other patients that we felt we had to do it,” McKinley says.

Though both McKinley and Ezzat had interacted with many cancer patients before their work on Blue Note’s first treatments, they still were surprised by some of what they heard from patients during the development process for Covid Cancer Care.

“One of the things that I found surprising was the extent to which patients expressed a huge unmet need for mental health care,” says Ezzat. “The lack of mental health resources available to cancer patients today is pretty shocking.”

“The lack of mental health resources available to cancer patients today is pretty shocking.”

There are 18 million cancer patients and survivors in the United States today, and nearly half of them say they experience psychological distress, such as stress or anxiety. Only 1 out of every 5 cancer patients currently has access to cancer-specific mental health care to alleviate their distress. Left untreated, cancer-related distress can affect cancer treatment outcomes .

Also, Ezzat and McKinley were somewhat surprised to discover just how much cancer patients valued the opportunity to delve into the most sensitive and difficult topics related to their cancer, such as how to talk about mortality with loved ones. “It wasn’t clear to me going in how much patients would want to discuss their cancer, but they told us that they did, and that they wanted to learn stress management techniques for scenarios that are really specific to the difficult situations a cancer diagnosis creates,” Ezzat observes.

But McKinley, Ezzat and the broader Blue Note product development team were not surprised to see that patients use a variety of language and approaches—sometimes informed by different gender, racial or cultural norms—to describe and handle their cancer-related distress. The company’s challenge going forward is to find ways to make their treatments feel as “custom” as possible.

“Our aspiration is to develop treatments that are fully reflective of all patients and responsive to their different needs,” says McKinley. “So if you have a specific type of cancer, you’re male or female, a young adult or older—the treatment you access will feature images, language, even scenarios that are specific to you and what you are going through. It’ll be hard but worth it.”