Issue 01 Winter 2017
AYA Cancer Mindshift
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Inspired By Hope, Realized By Science
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AYA Cancer Mindshift
Publisher Hopelab Editor Shane Brentham Contributing Editors Jay O’Rear Robin Raskob Writers Jay O’Rear Ashley Pandya Robin Raskob Hopelab Team Kylie Castellaw Janise Chan Yin-Juei Chang Stephanie Greer Ashley Pandya Design Landscape Contact 100 California Street Suite 1150 San Francisco, CA 94111 415 818 8400 Hopelab.org
©Hopelab 2017 A Part of The Omidyar Group All Rights Reserved
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Hopelab is a social innovation lab focused on designing science-based technologies to improve the health and wellbeing of teens and young adults. Building upon our foundational work to improve health outcomes for young people with cancer, we’ve also worked to encourage childhood physical activity, design family-strengthening tools for young mothers and their babies, and help teenagers cultivate emotion-regulating strategies and skills. Working closely with academic researchers, design firms, and healthcare systems, Hopelab has developed an approach that combines behavioral psychology with socially aware design. We firmly believe that the toughest health challenges facing teens and young adults can be addressed with scientific rigor, innovative design, and empathy. To make the greatest impact we’re working with like-minded partners to scale our interventions and deploy them where they’re needed most.
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AYA Cancer Mindshift
A Chatbot For Health Adversity
Words Jay O’Rear Ashley Pandya Robin Raskob
Illustration Mackenzie Brookshire
Photography Aaron Wojack Colson Griffith
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Over the course of the next several months Hopelab is building a high fidelity chatbot prototype to deliver psychological interventions to young adults who struggle with anxiety and depression. While our focus will begin with the Adolescent and Young Adult (AYA) cancer population, we anticipate this type of intervention could scale to other chronic disease populations. Hopelab is exploring how we can continue to leverage a decade of strong relationships and experience with young cancer patients and survivors to improve their long-term health outcomes. In working with cancer patients, we’ve found that the challenges they face are acute but not unique. We’re leveraging our insights around this population’s needs to build technology that broadly addresses the challenges faced by youth who struggle with other types of health adversity, including depression and anxiety.
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1 A group of young cancer survivors attend a Hopelab Cancer Mindshift retreat in July 2017.
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2 In working with cancer patients, we’ve found the challenges they face are acute but not unique. 3 Survivors write chatbot content to help address anxiety and depression.
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4 Introducing the Cancer Mindshift chatbot concept to survivors at CancerCon.
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Right AYA Advisory Council members discuss ways to improve health behaviors for other survivors.
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AYA Cancer Mindshift
The Adolescent & Young Adult Cancer Population Seventy thousand young people (ages 15–39) are diagnosed with cancer each year. Cancer is the leading cause of disease-related death in this age group. While survival for many childhood and older adult cancers has increased over the past 30 years, no significant survival improvements have been realized among AYAs in more than three decades. Experts hypothesize that the reasons may be as much psychosocial as they are clinical. In fact, AYAs are most likely to experience depression, heightened anxiety, distress, and PTSD in their first 12–24 months after completing treatment — meaning that the approximately 60,000 AYAs who complete treatment each year have huge unmet psychological needs. Cancer Mindshift aims to address this, by nudging AYAs to take on bite-sized activities that help them reintegrate into their normal lives and forge stronger connections to their support communities.
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70k
Age
30 Years
Symptoms AYAs Experience in Their First 12– 24 Months Off Treatment
70,000 AYAs (ages 15–39) are diagnosed with cancer each year.
AYAs are more likely to experience depression, heightened anxiety, distress, & PTSD in their first 12–24 months off treatment.
Survival rates for childhood & older adult cancers has increased, while no significant survival improvements have been realized among AYAs over the past 30 years.
Approximately 60,000 AYAs who complete treatment each year have unmet psychological needs.
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AYA Cancer Mindshift
The Adolescent & Young Adult Cancer Population Seventy thousand young people (ages 15–39) are diagnosed with cancer each year. Cancer is the leading cause of disease-related death in this age group. While survival for many childhood and older adult cancers has increased over the past 30 years, no significant survival improvements have been realized among AYAs in more than three decades. Experts hypothesize that the reasons may be as much psychosocial as they are clinical. In fact, AYAs are most likely to experience depression, heightened anxiety, distress, and PTSD in their first 12–24 months after completing treatment — meaning that the approximately 60,000 AYAs who complete treatment each year have huge unmet psychological needs. Cancer Mindshift aims to address this, by nudging AYAs to take on bite-sized activities that help them reintegrate into their normal lives and forge stronger connections to their support communities.
Depression — Heightened Anxiety — Distress — PTSD
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70k
Age
30 Years
70,000 AYAs (ages 15–39) are diagnosed with cancer each year.
AYAs are more likely to experience depression, heightened anxiety, distress, & PTSD in their first 12–24 months off treatment.
Survival rates for childhood & older adult cancers has increased, while no significant survival improvements have been realized among AYAs over the past 30 years.
Approximately 60,000 AYAs who complete treatment each year have unmet psychological needs.
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1 Elizabeth, age 20, Non-Hodgkins Lymphoma survivor 2 Martin, age 24, Cancer Mindshift Advisory Council member; cancer survivor
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A Chatbot as a Vehicle for Psychology Interventions From the beginning of this project, we were interested in imagining products beyond mobile apps. Choosing an existing but versatile platform, such as Facebook Messenger, that people are already using could help us reach as many users as possible with minimal friction and inconvenience. We also want to emphasize the importance of human relationships and real therapy and that this chatbot does not aim to replace those elements. One of the primary goals of this chatbot is to better facilitate connections between cancer patients, their community, and supporters, so the chatbot suggests ways they can reach out to people around them and tap into their available resources. What this chatbot is intended for — and what we’ve heard is important from our user testers — is to help in the space between therapy visits, between support group sessions, between conversations with friends or family. We heard it’s important for them to have a place to have a conversation during those late nights when they feel anxious but don’t want to wake anyone, or when they’re sick in bed and everyone else is busy.
Because we’re a research-driven organization, chatbots offer new and innovative ways to test content for different audiences. Before we even take on a formal efficacy study, we are able to test the effectiveness of our content on young people’s psychological well-being. Facebook frequently adds new features to the Messenger platform that enable us to further broaden our scientific exploration. For example, we can use survey functionality within the Messenger user interface to collect additional data around changes in mood, users’ offline engagement in positive health behaviors suggested by the bot, and more. Similarly, we can experiment with different “nudge” messaging, timing, and frequency using Messenger’s notification features. We are currently testing which nudges will help users form long-term habits around mastering psychological behaviors introduced in different modules.
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2:00 AM
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AYA Cancer Mindshift
Lonely. “Hey Juan, just checking in, how are you feeling?”
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AYA Cancer Mindshift
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Juan’s Story
It’s 2:00 AM and Juan, a 22-year-old cancer survivor, can’t sleep. He’s riddled with anxiety, as he is on many nights, but all of his friends are asleep so he can’t reach out for help. He lives in rural Ohio so there isn’t a support group of cancer survivors nearby. As he does on many other nights, Juan starts scrolling through his phone to pass the time. He notices he has a new message from Cancer Mindshift, a funny and helpful cancer chatbot he discovered on the Facebook Messenger app a few weeks ago. The message is: “Hey Juan, just checking in, how are you feeling today?” Juan can choose one of a few options, and he chooses “lonely.” Cancer Mindshift then offers him a few activity options based on his mood. He can watch short video clips posted by other cancer survivors about how they struggled with loneliness, he can commit to taking a walk with a friend tomorrow, or he can text three friends this week to tell them why he appreciates them. Juan chooses to watch videos of
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other cancer survivors, one of which was recorded by a survivor who suffered from insomnia. Juan doesn’t necessarily feel better right now, but he does feel less alone and more normal and eventually, he is able to fall back asleep. Tomorrow, he might even commit to jogging as his health goal for the week. Like this loneliness module, Cancer Mindshift has several other modules that Juan can choose, including supporting positive health behaviors, reading inspirational stories, and journaling feelings. All of these modules are based on effective interventions in psychological literature, but have been re-written so they sound like they came from a funny, occasionally angry, loyal, and generous friend who really gets it.
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Cancer Mindshift Chatbot Videos
1 Advocating For Yourself... With Your Parents Mouhammad (26) shares his story about overcoming self-esteem issues and how he dealt with a tricky relationship with his parents as he transitioned from cancer patient to survivor.
2 Feeling Guilty... Is That Normal? Lenny (23) Nobody tells you that you’re going to feel guilty... Survivors guilt can manifest at all different times during and after treatment.
3 Looking ‘Sick’ and How to Deal Asia (19), Eden (16), and Elizabeth (20), share their advice about how to deal with looking sick — embrace the ‘cancer look’ or draw on those full eyebrows every single day?
4 How Cancer Changed Me Martin (24) didn’t used to care about a lot of stuff before cancer, but now he cherishes the little things — helping others, listening, appreciating small moments.
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How Did We Get Here? Numbers for how our team identified candidates for psychological targets and measures:
Medical experts interviewed
9 Product concepts tested with AYAs
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Psychological experts interviewed
7 Collaborative design sessions at hospitals across the country
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AYAs surveyed
120 AYA advocacy orgs spoken to during business research phase
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Through deep listening and synthesis, we identified the three major psychosocial factors at play:
Little-to-No Energy or Sense of Support Many AYAs feel like they’re “different people” than they were before treatment. Laura (20) wants to build a new, post-cancer identity, but is unsure of how to do so. She also finds it difficult to communicate this desire to family and friends. Dealing with fatigue and other hardships, Laura and others struggle with self-exploration and reintegration into their former lives.
Uncertain Sense of the Future Many AYAs don’t want to get their hopes up about long-term survival; some even feel guilty for surviving treatment. Keenan (16) grills his care team for information about his condition and medication side effects, but doesn’t ask about his prognosis and refuses to Google medical information about his condition. Other AYAs express a desire to live in the present moment rather than rely on a future that may never come to pass.
Desire to Listen to Others and Help Through Sharing Several AYAs express a desire to normalize their cancer experiences by hearing others’ stories. At the same time, they express that they don’t want to hear “sob stories from attention-seekers.” Jasmine (17) wants to hear helpful examples of how people dealt with specific cancer-related challenges, she’d also be very excited to share her own as well.
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The Science of Resilience With these factors in mind, our design process focused on exploring technology-based solutions that increase pro-social behaviors, social support, cognitive stress management, and exercise. Targeted outcomes include decreased depression, higher energy levels, and a greater sense of purpose, social connection, and control, (sometimes referred to as self-efficacy). We know that individual cancer survivors will face his or her own unique challenges, so rather than targeting one specific medical outcome, we are focusing on boosting individual resilience.
Our Process We are intentionally building our chatbot architecture in a way that enables us to iteratively and continually evaluate outcomes of our interventions at multiple levels both within individuals and across groups.
How Does One Boost Resilience? Resilience is defined as the innate capacity to bounce back from adversity, both psychologically and physically. Science has shown that there are three concrete and actionable psychological experiences that can be intentionally cultivated to build resilience: purpose, social connection, and control. Using psychological interventions, scientists have proven that targeting these components of resilience can have powerful psychological, neurological, and biological effects. Working with a team of experts, including psychologists, neuroscientists, and clinicians, we’re translating proven interventions for building psychological resilience into our chatbot content.
This scientifically randomized experimentation helps us examine not just how well our interventions are working, but also why. Our content is organized in modular blocks that can be individually randomized to separate groups or in different orders to test content with active controls. This experimentation strategy combined with our detailed psychological outcome measurement gives us a deep level of control and understanding of the validity of our content.
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Connection + Purpose + Control = Resilience
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How Are You Doing Today? In our day-to-day it’s natural enough to ask “How are you doing today?” as the start to any friendly conversation. The same holds true for conversation with our bot — however, there’s more to it than that — understanding and assessing momentary mood changes gives us insight into the day-to-day psychological experience of our users and allows us to precisely target our content, guiding within-person microrandomizations. Drawing from research we are crafting this daily check-in so that we will be able to reliably measure emotion in terms of: Valence How positive vs. negative someone is feeling Arousal How much activation or energy someone is feeling
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How Are You Doing Today?
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AYA Cancer Mindshift
How Are You Doing Today? In our day-to-day it’s natural enough to ask “How are you doing today?” as the start to any friendly conversation. The same holds true for conversation with our bot — however, there’s more to it than that — understanding and assessing momentary mood changes gives us insight into the day-to-day psychological experience of our users and allows us to precisely target our content, guiding within-person microrandomizations. Drawing from research we are crafting this daily check-in so that we will be able to reliably measure emotion in terms of: Valence How positive vs. negative someone is feeling Arousal How much activation or energy someone is feeling
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Designing For Survivors Thirty-five AYAs applied to be part of the Hopelab AYA Cancer Advisory Council. In July 2017 Hopelab brought the nine council members charged with designing the In the Club content to San Francisco for a working weekend retreat. While most teenagers or young adults (this group ranges from ages 16–26) sleep away their weekends, this group worked 10-hour days to write bot content that feels natural and compelling to the users of the bot. Best of all, this group really tested our assumptions, once again proving that we really need our end user to be an integral part of our design process. When we think we have a perfectly appropriate response to a prompt, our advisory council might roll their eyes and say, “What, did you have to google Urban Dictionary for that?”
In contrast, their responses are funny, and while their “chatter” sometimes contain slang, they’re more importantly, empathetic, warm, rooted in real experience, and sometimes humorous. We’re finding that attributing real responses to AYAs is bringing out the patientdesigned nature of the tool even more. With content written by survivors it’s almost as if the bot actually has a human-like quality. It makes sense — they’re writing what is meaningful to them and that makes this bot truly authentic.
Left Examples of the “chatter” written by the Advisory Council
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AYA Cancer Mindshift
Right Lexus, and other council members, writing chatbot content rooted in their own personal experiences
Designing For Survivors
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Chatting with the Cancer Mindshift Chatbot We’ve created a chatbot that introduces users to behavioral interventions that drive better psychosocial and health outcomes. The responses it serves up are based on a decision tree, meaning the chatbot has a number of pre-programmed challenges to offer based on input from the user. While interventions make up a majority of the responses, we want to make sure that they are delivered in a way that resonates with young survivors, almost as if they were getting this advice from a friend. This “chatter,” or the softer parts of dialogue that we don’t even think about but make a conversation dynamic, engaging, and human, is all written by the Hopelab AYA Cancer Advisory Council. Here are examples of what some of that chatter looks like:
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Situation 1 When we want to nudge the user to take on pro-social behaviors:
In our daily lives, we all perform acts of kindness, generosity, and thoughtfulness — both large and small — for others. Think about somebody close to you.
OK I got one!
In the next 24 hrs do a small nice thing for this person today.
Ok, I will
Not feelin’ it
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Situation 2 When we want the user to feel like they are part of a community that understands them:
I could fill a dictionary with all the specific words and phrases we cancer survivors use ;)
Yep
Alright, we got a couple choices for today’s word of the day. What’s it gonna be?
Baldiful
Your crew that has also had Lymphoma
Lymphomies
Scanxiety
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Situation 3 When we want the user to feel like they aren’t alone:
Which tough question do you want some advice on from other survivors?
Why me?
Not everything makes sense. We don’t really have a choice, but in how you face it.
Is it ok to feel angry?
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What’s Next? As we move forward in our journey to better understand how chatbots might address the psychosocial challenges young people face, we’re scoping out the next steps in our design process. Over the next few months we will be working with high-growth mental health companies to explore and prototype the role behavioral science, efficacy testing, and partnerships with health systems can play in scaling quality psychology interventions to young adults everywhere. We are inspired by the hope that the intervention offers its users. So far, the reactions in beta testing groups have been overwhelmingly positive, indicating there is a need for something like this, within the AYA cancer population, certainly, but also within other populations struggling with other types of health adversities including anxiety and depression. To make the greatest impact, we need to work with a like-minded partner to scale this intervention and deploy it where it is needed most. Are you ready for a mindshift?
Phase 1: Discover May 2016 – June 2017
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We Are Here
Phase 2: Design
Phase 3: Pilot Prep
July 2017 – March 2018
Issue 1: Talk To Me
Phase 4: Empirical Pilot
Phase 5: Deploy
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Hopelab.org