Headway– a collaborative guide for cancer survivors
Human Centred Design, Service Design, User Experience Design
PARTNERS: MEMORIAL SLOAN KETTERING CANCER CENTER, SHAREING AND CAREING, MFA DESIGN FOR SOCIAL INNOVATION
Headway is a collaborative guide for cancer survivors. It is a real time guide that supports cancer survivors to create sources of knowledge, social support and self efficacy through connections with other survivors so that they are better equipped to advocate for their needs and pursue their goals . Headway is a survivors' guide to survivorship created with a community of survivors and supportive experts. Headway is an app that was created as a solution to solve for the needs of cancer survivors after they are done with active treatment at hospitals.
1 in 3 people in the US will get Cancer (Source: American Cancer Society, 2003). It is a massive population that right now it totals to 15 million people (Source: National Cancer Institute, 2014).
THE GOOD NEWS
The population of people surviving cancer is only increasing and the number of cancer survivors is expected to increase by 25 percent in the next decade (Source: Bluethmann, Mariotto, Rowland; 2016).
WHAT'S GOING WRONG FOR CANCER SURVIVORS?
On one hand, this increase in the number of survivors is evidence of a trend: diagnosis and treatment are getting better, and that’s very good news. Yet as long-term survivorship increases, the healthcare field is seeing evidence that survival might not be the unmitigated positive experience we might hope it will be. For instance, 2 in 10 working-age survivors say that physical, mental, or emotional problems have limited in part or entirely their ability to do their work, and 40% of survivors say they’ve found their near and long-term career prospects decline. (Source: Bluthmann, Mariotto, Rowland; 2016; Alfano, Rowland; 2006; Srivastava; 2017)
Target audience: We chose early on to focus on those survivors in transition after active treatment.
RESEARCH FINDINGS AND KEY INSIGHTS
Many survivors reported that the survival was worse than Chemo. Cancer seems on its face to be about diseased cells. But for people who live through it, the experience impacts virtually every part of their lives.
Following are some of the reasons why survival was worse than chemo–
1. Healthcare systems: Hospitals and treatment centers have recently gotten so much better at helping with the broader impacts of cancer and treatments. But there are more patients than staff, so survivors are moved along. For a survivor, it’s like getting pushed off a cliff built high by support that ends too soon. Survivors told us they rarely have the strength to use the support while in treatment, yet once they’re done treatment, they lose access. Survivors feel unprepared and poorly equipped for this sudden transition. And due to this sudden transition and losing monitoring from experts, survivors often face the fear of recurrence of cancer.
2. Workplaces: Surviving cancer often comes with a lot of serious, surprising side effects that impact everything. Especially your support at work. Short of big changes to state and federal law, workplace protection will remain inconsistent, unpredictable, inflexible and often flims. And that’s even when good HR departments try to help.
3. Social Support: Every single survivor says that by the time they’d finished treatment, some of their closest friends and family don’t even text anymore. Lack of social support is so real a problem that it increases mortality – some studies show that social isolation can as much as triple your risk of death.Survivors need social support more than ever. But instead they’re losing it.
ideation and PROTOTYPing
1. Survivors are a big, trustworthy tribe that immediately 'gets it'. And where others doubt, survivors rally. The disclosure that’s risky elsewhere is finally safe with survivors, making their support groups safe havens of empowerment.
2. Cancer isn’t only one thing, so neither are we. That’s why it’s so helpful that survivors readily exchange enabling knowledge and support on a big range of challenges. And when assembling programming, a good support group will first survey what survivors’ challenges are, because they can change and surprise over time. And support groups also frequently try to bring in experts related to shared challenges.
3.Mutual monitoring helps manage anxiety. It’s comforting, and effective, and helps build back what was lost when they finished treatment.
Key Insight and Delighter
We found that survivors provide de-risked, informed and curious, consistent support. Survivors are offering needed acceptance, information, and affirmation. And where survivors are good, more survivors are often...more good.
WHAT IF we centered support on survivors by connecting them with others like them, and then together to the people who have resources they can use to thrive?
EXISTING SOCIAL MEDIA SERVICES FOR SUPPORT
Our early designs focused on the majority of users who we found already seek information and support online at some point in their journey.
1. Survivors who joined great support groups on Facebook can end up with a newsfeed takeover, turning their Facebook into a place that’s entirely about their cancer.
2. Privacy really is a concern for many who had cancer and fear disclosure.
3. Newsfeeds are really ephemeral. Survivors create great answers to shared problems that then can’t be found tomorrow.
OTHER APPS AND DIGITAL SERVICES FOR CANCER SURVIVORS
And we found that cancer affects more broadly into lives than many other services have yet addressed.
How might we build a space to be real without fear, to access knowledge and support, and to get expert insight – all to build a new normal to get back to?
Headway is a collaborative guide for cancer survivors. It helps create sources of knowledge, social support and self-efficacy through connections with other survivors.
Initial wireframing and user flows
1. To be able to filter out posts you want to follow up on each day when using the app.
2. To not only ask queries, but can browse needed posts and save them to make your own guide.
Beacons: Beacons is where survivors post and exchange quick messages with all survivors, and where anyone can pitch in to respond. The alert posted shows up to headway’s community, who can respond with insight and affirmation. To a lot of survivors we asked – including the recipient and sender – this kind of exchange has a real impact. It’s a light-touch, high-impact interaction.
Guides: Where survivors and experts use headway’s prompts to build collaborative guides to their most pressing challenges. With prompts based on real posts by other survivors, you can begin to build a ‘guide’ to your life in survivorship. When you find a prompt with a challenge you have, you can browse other survivors’ answers and save the responses that help. Survivors help each other connect with support and advice.
Caravans: Where survivors can search for and connect with support groups in their area.
THEORY OF CHANGE | MONITORING AND EVALUATION PLAN
Insight generation, creative collaboration, sense making and analysis, critical thinking
Hrudaya Veena Yanamandala, Stephen Morrison
Qualitative Research, Analysis and Synthesis, Facilitation Design for focus groups, Prototyping, UI and Visual Design, Wireframing, Testing, Theory of Change, M&E plan