Answering the human questions: How we’re putting patient voices front and center
Sep 28, 2022 – [[read-time]] minute read
We all have — or will — face a moment when we hear news about a difficult medical diagnosis, either for ourselves or a loved one. The first impulse is often to try and absorb as much information as possible to make sense of what it all means.
Many times, people aren’t coming to YouTube with a health question at all. Instead, they come with a human question: how do I live with this?
We have spent a lot of time at YouTube trying to better understand why people come to our platform when they have health questions. Some of what we found isn’t surprising – people visit YouTube when they want to understand something complex in simple, visual terms. Human biology is complicated and video can make it easier. YouTube creators are seen as down to earth messengers who explain things in an accessible way that people understand.
But we also saw another pattern in the data. Many times, people aren’t coming to YouTube with a health question at all. Instead, they come with a human question: how do I live with this?
People grappling with the reality of living with a health condition, especially a chronic one, were not looking for information. They were looking for support. How did other people live with this? Does it ever get better? How do I support my loved one through this? What meaning can I make of it? And they were all getting at the same human element: we help each other get through things. The need for connection and belonging is a universal one, and that’s proven with data – the science of peer support shows that social connectedness positively impacts both physical and mental health.
Today, we’re launching a new way to do just that, with the introduction of our new Personal Stories shelf. Starting this week, when you search for health topics and questions related to certain conditions, you’ll see a shelf showing videos of personal stories relevant to the topic. To start, we are focusing on queries related to cancer, and mental health topics like anxiety and depression, but these topic areas will expand over the coming months. The Personal Stories shelf will be available for users in the US, but we plan to expand this feature to more markets around the world.
To be eligible for the shelf, videos must primarily focus on a personal, authentic lived experience that is relevant to a specific physical or mental health condition. Content that is promotional in nature is not eligible for this feature, and all videos that appear in this feature must comply with our policies that prevent the spread of health misinformation.
This work was deeply influenced and informed by the personal experiences of all of us on the YouTube Health team, but none more so than our colleague Maya Amoils.
During an interview on the All the Wiser podcast, Maya shared that after her diagnosis, she sought insights from people who had walked in her shoes: “I wanted to learn from people who had sat in the unknown and learned to live with it.”
Maya was in her late 20s when she was diagnosed with stage-4 ovarian cancer. She spoke both publicly and privately about the experience of that diagnosis, and the daily ins and outs of living with cancer. After her diagnosis, Maya found herself seeking connection with other young women who were going through a similar experience. She helped our YouTube Health team understand the need for people to have shared human experience to complement information – to connect and know that you’re not alone. That’s why, in addition to her role as the Mental Health partnership lead, Maya was also our product consultant and helped guide our work to better define, algorithmically identify, and showcase people’s personal health stories on YouTube. She helped us to center the perspectives of people who were dealing with the human experience of illness through her own superpower – an uncanny ability to connect easily and deeply with everyone who met her.
We lost our dear friend Maya this past January. She leaves behind a legacy of giving not only through this project, but through Maya’s Way, her foundation that supports women under age 40 who are undergoing cancer care to access integrative medicine as a support to their treatment, and helps them to live with optimal wellbeing despite their illness.
In the months since Maya passed, we have been thinking about how to honor her and her work on this project. It is difficult to articulate how much we miss Maya. But sharing her story and the ways that she impacted all of us who were so fortunate to know and work with her is one way that we can demonstrate all that we learned from her. She has made an impact that will live on through all of the YouTube creators, patients and caregivers who find connection and support in difficult times. We hope that each of our viewers finds their own “Maya” when they need help along the way.