participatory + informatics + personalized + community + design + play + efficient + predictive
Participatory Informatics
I refer to my work broadly as "Participatory Informatics". This seeks to combine key principles from Community Partnered Participatory Research (CPPR) with tech-forward approaches to addressing mental health research, healthcare, and community priorities. CPPR, pioneered by Ken Wells and Loretta Jones, is a framework to support equitable research in communities through a focus on true partnership, power-sharing, equity, trust, transparency, and knowledge sharing. My work translates these principles to digital technology approaches to work towards creative, equitable technology-supported approaches in healthcare and research.
Value and Equity: A New Digital Divide
Most digital health policies revolve primarily around keeping data private or anonymous. Ethical use of data and technologies, though, now must go beyond keeping data private. It involves consideration of who contributes to, benefits from, and controls digital assets (such as data or software/services). Previously, we thought of the "digital divide" as just being about who has or does not have physical devices such as cellphones and desktop. With advancing analytic techniques though, there may be a new digital divide emerging: that is between those who benefit from digital health advances more than others. For example, imagine a machine learning algorithm that could predict the occurrence of a heart attack and therefore reduces the number of deaths from heart attacks. If that algorithm was trained using data primarily from one socioeconomic group of individuals, it may be less effective for other groups. In that case, the algorithm would predict fewer heart attacks and the other groups would have consequently worse health outcomes. Algorithms that unevenly benefit different groups may then worsen health disparities, creating a new kind of digital divide.
Who Creates Matters
Artists and other creators know that while they may start out with the intent of creating one thing, through the creative process, what they create tends to evolve and change. And it changes based on who is doing the creating. In addition, those who can create and maintain also are able to control what gets created. Because of this, we think it is very important to consider who is able to create digital technologies. To this aim, we created the Chorus platform. It's a web-application that enables people to create their own mobile apps - including interactive text, voice and smartphone apps. No coding is required. With this platform, a broader group of individuals are able ot be directly involved in the creative process. This includes community stakeholders, providers, researchers and even individual patients (creating personal mobile health apps that they then use and change over time to support their own care based on their need/interest).
Let's Innovate, Together
My work seeks to integrate the principles above - including that of equity, trust, power-sharing, partnered engagement, and novel use of technologies - to help improve healthcare, research, and communities through innovating together towards solutions. This largely encompasses the work of the Innovation Lab @ Semel Institute at UCLA that I started and direct. We support a number of projects that can be viewed on my project page as well as the broader set of projects supported by the Lab and Chorus on the Innovation Lab website.

Interested in this approach? Please reach out and connect! The more the merrier. ;)