Staying iN Touch: Community-engaged Research with Insiders and Outsiders

By Janelle Charles, Graduate Student Researcher and Katherine Kim, Principal Investigator, iN Touch, San Francisco State University

Read all iN Touch blog posts.

We first conceived of iN Touch two years ago at a local conference on innovation in health care services. One of the speakers talked about health care being stuck in the old paradigm of building large, complex, Cadillac solutions that require long implementation and training cycles in order to be effective. The new paradigm is just the opposite: building small, simple portable solutions that are intuitive and immediately valuable.
 
And so, the idea for iN Touch emerged—a small, simple portable way to help low-income youth with overweight/obese and anxiety/depression track their health and share that information with the care team to improve collaborative health management.
 
Here at the Health Equity Institute, we ascribe to several tenets including innovative research, community engagement and equal access to health.  For iN Touch, we had a real opportunity and obligation to engage community. But that meant admitting we didn’t know everything and letting go of a little control. The first was easier than the second.  
 
We as the research team are “outsiders.” We aren’t youth, although we all used to be. We aren’t low income, although some of us used to be. We aren’t anxious or depressed, but some of us wish we could lose weight. We need “insiders” to inform and direct our research. So, we created the Youth Advisory Board (YAB). We will meet with them six times over the course of the project to gain insider information about the future participant pool and prepare us for the myriad challenges unique to our study.

We have already gleaned several key insights from the YAB. In their own words:

Feelings of guilt and reluctance to report on eating patterns (via photos) and  mood, to health care providers.   

“…since it’s your doctor and they’re watching… your health, you might feel guilty about [taking pictures of your food]… ‘all I eat is McDonald’s… they’re gonna see that I eat a lot of bad food, so I’m going to lie and not send them my picture.’”

Trust between the patient and care team

“… a really good idea… [is] acknowledgement that there [are] gonna be days when you’re not eating healthy, then they know… like ‘oh, we know and so just tell us,” you know, it’s not a secret…” 

How much time would you spend on a daily basis collecting… information? 

“When I collect the date, I don’t want any… more than like five touches.  I don’t care about the time, but… it better be like real quick, like five [touches]. Five is my limit, pushing it.”

 
These open dialogues with youth will help us get to know our target population and avoid silly mistakes: like contracting a health coach who cannot relate to youth or developing a complicated application that requires teens to use more than “five touches” on a mobile device. Although we will undoubtedly encounter obstacles over the course of our study, YAB will keep us iN Touch.