Every day, individuals all over the world – some marginalized by ethnic identity or immigration status, others by geographic isolation or lack of material resources – fall through the cracks in healthcare systems. How do we make progress in these high-needs, low-access spaces, and what can we learn by bringing together experts from across the healthcare landscape? How do health practitioners serving seldom-engaged patients get the job done? How do researchers create the evidence needed to support that difficult work?
As part of the Reaching the Rarely Reached series, On the Ground’s Mackenzie Whipps asked three practitioner-researchers how and why they conduct research with populations that are often forgotten within the healthcare system. Each expert targets a different social problem and uses novel strategies to better serve communities.
As a Registered Dietician and recent Steinhardt PhD Graduate, Dr. Amy Morel L’Horset specializes in diabetes education. Along with her colleagues, Matthew Cirigliano and Matthew Lucas, Dr. L’Horset was recently awarded a National Science Foundation grant to develop a telemedicine app that allows sustained, meaningful contact between clinicians like her and diabetic youth who otherwise would not have access to high-quality clinical care for managing their complex condition.
What do you see as the largest barrier to engaging with diabetic youth who may not have access to comprehensive diabetes care?
With Type 1 diabetes, kids are dealing with an all day, every day, disease. You’re constantly injecting insulin, monitoring your blood sugar, watching what you’re eating. It’s so not fun! And there are huge ramifications – low blood sugar can land you in the intensive care unit, so you can’t just say “today I’m not going to deal with this”.
Some studies have found that kids with chronic diseases are only about 50% compliant with their treatment plan. We went out and interviewed parents and kids, and we discovered that one of the biggest barriers for children with Type 1 is that kids weren’t taking insulin as prescribed with their meals and snacks. Some of that has to do with social stigma – they don’t want to have to deal with checking their blood sugar and taking insulin when they are having a snack with their buddies.
Even in communities where they have good access to healthcare, the education touch points are few and far between – we talked to kids with lots of resources, and even they are only talking with a diabetes-specific provider once every 6 months. Because this is a disease that they are having to manage on their own every day, it becomes a real challenge getting access to needed specialty care. Add to that the challenge of having lower SES, without the fancy insulin pumps and continuous glucose monitoring, it’s even a bigger challenge.
Technology can play a big role in healthcare delivery. Why did you decide to use an app for your intervention?
Based on the work that we did and the conversations that we had, we came into the NSF grant with the idea to have a gamified approach to managing diabetes. We were trying to leverage the platform to bring together both the knowledge building about diabetes and the necessary tracking that needs to happen, in a way that was fun for kids, and would promote self-empathy and empowerment. We did this through using a virtual pet who has Type 1 diabetes, too – so kids are rewarded in the app for completing learning modules, tracking their behaviors, for going on “missions” with their pet, etc. The gamification of healthcare is not new, but we found a gap with what was available specifically for kids with Type 1 diabetes. Our hope for the future is to use this app to connect patients with diabetes educators or their physicians on a more regular basis – to create more touch points for continuity of care.
When I was stationed in Germany in the Air Force around 2000, I happened to be placed in the hub for pediatric endocrinology for the families of active-duty servicemembers in all of Europe. And even then, we were trying out telehealth appointments to have more touch points with patients. I thought it felt awful – horrible time delays and technology issues. But parents and kids were so appreciative: “Wow, I don’t have to fly from Italy to Germany to have this appointment!” Many kids have smartphones now, so we need to think about how we can tap into that resource. When it comes to kids and smartphones, if you can’t beat them, join them!
What state or national policies do you wish we could see in the next 10-20 years that would better serve isolated youth with Type 1 diabetes?
I think there is a long way we need to go towards insurance reimbursement for more advanced, technologically-based tools, like continuous monitoring and insulin pumps. I also think this telehealth space is really interesting right now. In one of our test sites in rural Arizona for this new app, some families have to travel up to 90 minutes one-way to see a pediatric endocrinologist. Many of the parents are working two or three low-wage jobs and need to take a full day off to get their kids to the endocrinologist. We talked to families in Utah that are so rural that there just isn’t an endocrinologist or certified diabetes educator that is reliability or consistently in their area. So, can we bridge that access gap with telehealth? That’s an area that still needs more study.
Mackenzie Whipps is a 5th year doctoral student in the Psychology and Social Intervention program in the department of Applied Psychology.