For the last year, with Groupaya’s favorite collaboration ninja Rebecca Petzel, I have had the pleasure of working on a ground-breaking project for medical research. With the stellar Health eHeart Study team at UCSF and a dozen patient and patient organization representatives, we have been slowly building a new kind of network — an alliance between patients, caregivers, and researchers to produce patient-powered and patient-centered research.
This network is part of a budding movement, supported largely by The Patient-Centered Outcomes Research Institute (PCORI), where patient-powered research groups around the country are experimenting with new ways to include patient voices in the research process. Our group – the Health eHeart Alliance – has just had its formal debut with the collaborative research design summit we put on in San Francisco last month. The event hosted 75 researchers, patients and family members, doctors, nurses, tech experts and other stake-holders for a day and a half of rolling up our sleeves together and doing rapid prototype style design of patient-proposed research projects. For our design team and participants alike, the event felt like a home-run and the beginning of a truly different way of working for the research and patient advocacy groups involved.
Our clients put out this great reflection blog on the summit, which features a sweet intro video we created during the event. I recommend checking it out to learn more about this awesome collaboration project, and about the groundbreaking Health eHeart Study as well. You can also follow what we’re up to in the Alliance on Facebook and Twitter.
￼And before I close, I just have to offer a huge shout-out to Rebecca, our lead designer and facilitator, for her vision and craft that supported the success of this event. As her partner in crime, I have had the pleasure of learning so much working at Rebecca’s side, and watching her take a stand over and over for core collaboration values amidst the usual project stresses and time pressures to skip over the key relational and design principles that underpin this kind of work. It’s been humbling and a rich learning experience to work with her on this emergent process, and to watch her tease out everyone’s collaborative mindsets and collective genius along the way.
Stay tuned for a play by play blog post where I dissect some of my learnings from this project in more detail!