A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?”
She tagged a few people, including me, and a public conversation ensued. People shared resources, tagged other experts into the thread, and I ended up connecting with her to find out more about their project.
As an aside: This is one of the wonderful aspects of Twitter that I’ll miss if it disappears (or people continue to leave). We were able to create a pop-up, asynchronous community of practice. I happened to have some free time, wanted to learn more about their project, and was able to help. Without Twitter, I doubt this would have come together so quickly, if at all.
Together, the grant team and I came up with a set of questions for them to explore:
- What are the basic principles of human-centered design (HCD)?
- Are there examples of HCD that pertain to neuroscience research (their focus)?
- How might they most effectively listen and learn from their Community Action Board (CAB)? Are there models for shared leadership of a project like this?
- How might they engage, listen, and learn from community members who are NOT part of the CAB?
- Their goal is to democratize science. What are some ways that other organizations have done similar work?
- Their website will be a public-facing resource. What are examples of other orgs’ websites that do a good job of both sharing and listening, broadcasting and creating space for community discussion?
I’ll get the ball rolling by sharing my answers to each question. If you have more resources to share, please add them in the comments below.
1) What are the basic principles of human-centered design (HCD)?
World-famous design firm IDEO offers lots of free resources about the basics of design thinking on their website. For $199, IDEO offers a course: Hello Design Thinking.
2) Are there examples of HCD that pertain to neuroscience research?
In a classic 1996 article, “New bottles, old wine: hidden cultural assumptions in a computerized explanation system for migraine sufferers,” Diana Forsythe showed the pitfalls of not listening to neuro patients when designing a tool meant to help them.
If you are not able to get a copy of the article, I sum it up in this blog post: Put down the clipboard and listen.
3) How might they most effectively engage, listen, and learn from their Community Action Board (CAB)? Are there models for shared leadership of a project like this?
Solve M.E. has a shared leadership model with their Lived Experience Taskforce.
ImproveCareNow invites patients and families to be part of their Patient Advisory Council.
Savvy Coop is another model for respectful engagement with patients, survivors, and caregivers.
There is a ton of good work being done in this area. Here’s an article I think about often, not least because of the evocative title: “‘A limpet on a ship‘: Spatio-temporal dynamics of patient and public involvement in research.” Another: “Priority setting partnership to identify the top 10 research priorities for the management of Parkinson’s disease” (BMJ).
So much more to say about this! But moving on…
4) How might they listen and learn from community members who are NOT part of the CAB?
I’m reading a wonderful book, Hack Your Bureaucracy, by Marina Nitze and Nick Sinai, two people who are designers but (like me) probably wouldn’t claim that title. One of the first stories they tell is about how one of them — Marina — sat on a bench outside a VA hospital and chatted with anyone who sat down. It gave her insights about her work (as the CTO of the VA system) that she never would have gotten if she stayed in her office — or even ran a focus group. What are some ways you can engage all the different members of your community that are casual, unexpected, easy for them to participate in?
Another example: Here’s the post I wrote about the design exercise I created during my grand jury service. Asking two simple questions sparked change for the better. How might you create something similar for community members to elicit their questions, concerns, wishes, and ideas?
5) Their goal is to democratize science. What are some ways that other organizations have done similar work?
I AM ALS has a website that I personally find inviting and useful. I love their “I want to learn about…” dropdown. I bet that’s driven by user research.
ARCHANGELS is a company focused on lifting up caregivers, making sure they get the support they need (and I should note that I’m proud to be an advisor). They share their research in three ways: by publishing bite-size data points, links to publications, and by providing an interactive tool called the Caregiver Intensity Index to help people understand their own situation.
6) Their website will be a public-facing resource. What are examples of other orgs’ websites that do a good job of both sharing and listening, broadcasting and creating space for community discussion?
I’ll have to think about this one! As I mentioned, there are lots of research orgs that have beautiful, useful websites and likely have vibrant communities associated with their work, but I don’t have a sentinel example to share.
Now, your turn: Please share your own answers to these questions. Don’t be shy — brag about your own work if you’d like. This team and many others would love to learn from you. Comments are open.
Featured image: “What?” by Véronique Debord-Lazaro on Flickr.
Susannah Fox says
On the LinkedIn version of this post, Kellee Franklin suggested checking out the Helix Centre.
Even more to the point, Kellee is leading a masterclass on January 12 (!) about Human-Centered Design in Digital Health: Case Studies (!!).
Oh the masterclass looks interesting. I wonder when they say advanced if that excludes newer folks like us. Probably so. I’m going to poke around Helix !
Susannah Fox says
Since this blog is my outboard memory, I’m porting over some info I received from a community colleague on LinkedIn.
Jen Powell used a human-centered design approach to collaborate with the University of Cincinnati Gardner Neurosciences Institute Epilepsy Center and the National Epilepsy Foundation. They engaged community members, clinicians, and researchers, in a process that resulted in a targeted list of strategies for more effective treatments.
Here’s an article about their work:
Trailblazing a new approach to neurology care: UCGNI becoming Learning Health System, begins with Epilepsy Center, by Tim Tedeschi
This seems very relevant. Reading this now.
Susannah Fox says
Another great comment on LinkedIn, this time from Ian Terry:
Great post here, and this is precisely what we’ve been working on at Luna with our recently launched product, Community Driven Innovation (CDI), because we need to involve the patients and their communities as the drivers of the processes for this work and not be stopgap measures or short-term solutions. Even the term HCD is wrong; while all these outcomes need to be for humans, humans are part of a larger ecosystem that is the primary driver of our outcomes, and centering humans only ends up creating untenable solutions that are not sustainable for our broader systems and environments. We need a participant-driven design that centers the entire system as the main focal point. Many HCD practitioners look at this broad space, but the name itself leads to misinterpretation and misuse.
This holistic view of the environment, the context, the people involved, and the psychology behind how we think drove us to develop the new methodology that drives our CDI process—at the same time, being backed up by computational social choice methods so that the people utilizing the method won’t have to be trained in HCD or any other thing to get practical, actionable information out of it.