The end of life is a universal experience. Yet when you are in the experience it feels like alien, uncharted territory. Everything is new -- the emotions, medical questions, financial worries, family communication, legal requirements, you name it -- even though literally millions of people have stood in your same shoes before. How can we learn from everyone who has gone before us and break through the sense that we are in this alone?
The Concept: A Peer Learning Platform Built on Storytelling
"I Know Something" (IKS) is a peer-to-peer storytelling platform built on short, first-person video stories and simple reflection exercises. It opens a connected and very human door to learning in an often overwhelming, confusing, and emotional experience. The personal stories, links, and exercises help people understand what is happening, reflect on their own experience, and make great end of life decisions for themselves.
We created a working prototype for the Challenge that included six sample stories from peers and from me (an example is embedded below). We continue to work on the service. You can explore the latest version of the IKS site to see where we are, volunteer to share a story, or join our working community. The site works on mobile and desktop.
Lessons from the Refinement Phase
We used the prototype to explore IKS with several groups including people who have been through the end of life experience, healthcare professionals, support and therapy experts, and fundraisers (as an initial proxy for donors). We also worked with individuals to create video stories and learn from planning, capturing, editing, and adding exercises to their stories.
The overall reaction to IKS has been fantastic:
“I think the idea is ridiculously good and has amazing transformative potential."
"Love this idea. Intimate; personal; non clinical; accessible; helpful; provocative; supportive."
"It's excellent. The cult of silence about life limiting illness and death creates a great deal of unnecessary suffering which can be alleviated by people learning from other's experience, and just having permission to think and talk about these issues."
"Great idea! ... to know that the stories and faces of real people going through it are right at your fingertips when you're ready to see them is priceless."
"I spent hours researching about Fibromialgia and found thousands of websites with cold, raw information. This website is like a bowl of hot soup on a cold day for the heart."
You can dig into all the details of what we learned using these documents:
- Lessons from the Refinement Phase: This document summarizes key findings and includes detailed notes on the feedback we received. It also describes the approach we took to the Refinement phase and the specific activities completed.
- Feature and Enhancement Ideas: This document summarizes all of the ideas we heard for features and enhancements to the prototype.
We created some tools to help us collect feedback from the community during the challenge. We would always love to hear more reactions. You can use these tools:
- Interview Guide: This is a simple interview guide for anyone who wants to talk to a care professional or a family about the IKS idea.
- Survey for Healthcare Professionals: This five question survey is an easy way to share your thoughts!
- Survey for Patients and Families: This simple survey is a version for patients and families. Would love to hear from you!
The IKS concept can be developed in lean, iterative steps. The system can be delivered using off the shelf services and technologies so we can jump quickly into new tests with stakeholders. The breadth of content, number of stories, number of users, and user experience can all be expanded step by step as we learn more and more about the community and its needs.
The next step is to move from discussion of the prototype to working with families and caregivers to keep improving the service. There are two paths for this next stage -- one working in partnership with a healthcare provider, the other working with a more diffuse community online.
Details, Notes, and Other Learning
The following documents provide more detail on the concept, experiments, and learning about this concept.
More About the Concept (Updated 7/8/16)
IKS uses personal, human stories to show us we’re not alone and help us understand the end of life experience from the perspective of people like ourselves, people living through the experience. Click here to read a more detailed introduction to the concept.
A User Story (Updated 6/24/16)
Take a closer look at what the experience might be like for a couple who is suddenly facing an end of life experience. IKS gives them a community in which to start making sense of all the questions they now face. Click here to read the detailed user story.
User Experience Maps (Updated 7/6/16)
Roles and Relationships: There are a lot of different people who fill different roles in the end of life experience. Take a look at this document for an overview of the roles and relationships we want to consider.
Key Moments: There are critical moments in the end of life experience where peer stories could be especially helpful. These moments can provide a focus and an armature for building out the IKS collection of lessons. Take a look at our experience map of end of life moments. This is far from a complete map. You can check out this Google sheet of moments and add your ideas as comments.
The Primary Caregiver: The experience for each role in the end of life experience is different. This document looks at the experience map for the person who serves as the advocate and primary caregiver for someone who is dying.
Additional Experience Maps: We will create additional experience maps to understand the journeys for all of the people who will interact with the system.
Want to Learn More?
We are building I Know Something into an ongoing service for families going through advanced illness and the end of life. We continue to use human-centered design to learn and inform our solution. We would love to talk with you more about the service. Please come visit the I Know Something site and sign up to stay in touch!