By Sarah Reines
How do you make sure that online mental health treatment for cancer-related distress really works for the millions of cancer patients who struggle with stress and anxiety? Ask real-life patients to help design it.
At Blue Note Therapeutics, patients are involved in every step of the process to develop online mental health treatments that help alleviate cancer-related distress. As a two-time cancer survivor (follicular lymphoma and breast cancer), I’m one of dozens of patients who have been invited to partner with Blue Note on treatment design. I’ve provided perspective on everything from what Blue Note’s online treatments look like, to the features they include, to the real-life scenarios embedded in them to demonstrate techniques for managing stress.
I’m not the only one. I recently sat down with two of my fellow patient advisors to talk about what the experience has been like. Trevor Maxwell, a Stage IV colorectal cancer survivor, is the founder of Man Up to Cancer, an organization dedicated to helping men connect and avoid isolation during their cancer journeys. Karen Peterson, a Stage IV breast cancer survivor, is a cancer research advocate and former social worker.
Here are excerpts of our conversation about what it has been like to play an important role in the development of treatments like Covid Cancer Care.
Sarah: So, Trevor, what made you decide to work with Blue Note on the design of its online treatments?
Trevor: In 2019 I was using social media a lot to post about my cancer journey and I got a direct message on Twitter from Laura (the head of patient engagement at Blue Note) inviting me to have a conversation about a project. I spent an hour on the phone talking with her about what Blue Note was hoping to do with mental health care online. My first response was skeptical because I’m big on real human connections, especially in cancer. I wondered, did Blue Note really have my best interest in mind? But Laura was so genuine that I opened my ears to listening. By the end of our conversation I was persuaded that this is worthwhile.
The fact is, face-to-face therapy is not always available to patients. If it’s a choice between patients accessing real, needed care through a device – 24/7, wherever they are – or not accessing care at all, then I’d rather there be access to care. I thought that maybe if I was part of the team building it, I could help to steer it in a good direction.
Sarah: That sounds familiar. I also was curious about what Blue Note is trying to do with online mental health care, but skeptical at first. It’s kind of funny – I’m pretty sure I told Laura that I was not likely to be a user of a therapy app but it turns out I was wrong about that. [Laughs] More about that, though, later. Karen, what about you? Why did you decide to partner with Blue Note?
Karen: I used to be a social worker and I understand how important mental health care is, because I’ve been in the trenches with people. I’ve seen adversity, people forced to rise to the occasion when they’re at their worst, you know. Mental health care is especially important for cancer patients. When I was first diagnosed with cancer, another social worker walked me through my diagnosis…without her, it would have been a lot tougher. It’s too bad that mental health care gets pushed to the side often in cancer treatment. I think what Blue Note is doing – being creative about finding ways to ease anxiety and stress and depression and help cancer patients who are going through mental health crises – is very, very important…
Karen …because cancer can be isolating. When you’re home alone or it’s the middle of the night – who do you talk to about it? I see the Blue Note apps as sort of like an extra layer. Like you know how when it’s fall, cool outside, and you put your boots on, you put a nice little layer of socks, add a cardigan, a trench coat. Yeah, I feel like that. I feel like you’ve got your sources of support. And then you you’re alone, and it’s just you and your thoughts. And what do you do? And here are the apps. Yeah. It’s like extra support, something that keeps you from suffering in your own thoughts and your own isolation. I wanted to be a part of making that layer.
Sarah: Yeah. That’s a cool analogy. Since we’ve been working on them, I’ve been surprised by how much the Blue Note apps have been that protective layer for me. I guess that means we’re like the tailors making sure that layer fits perfectly. Huh. Yeah.
Trevor, what has surprised you about the apps or the process of developing them?
Trevor: I think what surprised me the most is the level to which we have been engaged in the development process. I thought we would be brought in occasionally to look at things that were already finished, to give a thumbs up, but instead I felt like we were very central to what was being shaped.
Karen: I was really happy that when we would make a point about content in draft, Blue Note would listen, would immediately try to figure out how to incorporate the feedback.
Sarah: Yeah, it’s been pretty amazing, actually. To be honest, there have been moments when I’ve felt a little worried. I’m just one person, and I can only speak for myself… hopefully I haven’t led them astray!
Trevor: But wasn’t it interesting how often you and I aligned on things? I mean, different diagnoses, we were coming from different places… but there was a lot of content that we reacted to the same way. Or experiences described in the scenarios that we both could relate to.
Sarah: Yeah. I do think there’s a lot of universal stuff that has come up in our conversations. It’s oddly comforting to know that other people have also experienced the same pain points. Maybe there’s a way that our pain will help someone else.
Trevor: Mmm. Yeah. We didn’t choose to develop skills and knowledge as cancer patients, but we have and we can use them to help others. Working with Blue Note, I felt very valued, that my voice was always heard, not just there as a token patient voice, but that my experience really had value for this team. It was a really empowering and validating experience.
Karen: I felt that too. And I can see that my experiences and your experiences and everyone else’s experiences bring a realness to the app. So when people use it, they won’t feel like, “This is phony, this is fake.” The apps will feel like an asset, not just something there to take up space on their phone.
Sarah: It’s not just taking up space for me. I’m really struck by how much I’m using the app content in my life. I just had a 10 day “dip” between a bad mammogram and follow-up tests that were reassuring. In our design sessions, we’ve talked a lot about how stress acts on the body… I could recognize that my headache, my upset stomach while I was waiting for those tests were related to stress. I could use the relaxation exercises we’ve helped to develop to ease the tension in my neck and shoulders and feel better. They worked! I guess I’m the customer for Blue Note’s apps after all [laughs].
Trevor: I think that’s a really hopeful sign.
Editor’s Note: Blue Note is always looking for additional patients to provide input on its digital therapeutic programs. If you are a patient and you’d like to be part of helping to develop future mental health solutions for other patients, please contact firstname.lastname@example.org.