Mastering Adolescents' Knowledge and Engagement in Research (MAKE: Research)

Project start date and end date: 07/2017 - 06/2019

Background:
Adolescents with type 1 diabetes (T1D) are an ideal group of partners for research because: (1) they have poor glycemic outcomes (only 21% of adolescents aged 13-19 years meet national guidelines for glycemic control); (2) they bear an enormous amount of responsibility for self-management of their disease; (3) they face many psychosocial barriers to successfully managing their diabetes, including stress and burnout and parental autonomy support; and (4) they are early adopters of mobile technology and social media. Despite the potential opportunities with these patient partners, researchers have not typically engaged with adolescent populations in the research development process, nor have they used technologies to promote skill building and to actively train them to be research partners.

Proposed Solution to the Problem: The “maker movement” is a technology-focused Do-It-Yourself (DIY) movement which emphasizes “learning-through-doing.” Makers create and prototype physical solutions to solve problems and participate in shared learning experiences through peer-to-peer interactions at community maker spaces or events. The maker movement is supported nationally by the National Science Foundation, the Department of Health and Human Services, and the White House, and is now being incorporated into STEM (Science Technology Engineering Math) education because of its experiential learning opportunities. We therefore propose to use the paradigm of the “maker movement” to engage, equip, and train teens with T1D to participate in the research domain.

Objectives:
The specific aims of this program are:

1. To develop a training curriculum that integrates instruction about patient centered outcomes research and methods with “making” activities.
2. To recruit and form an advisory board of teens with type 1 diabetes.
3. To train the T1D teen advisory board with the research training curriculum and work with them to engage other adolescent stakeholders in developing research ideas.

Research Topics & Methods:
In Phase 1, we will work with our patient partner to recruit two adolescents with T1D to serve as patient advisors. We will then develop a training curriculum that integrates instruction about the clinical/behavioral research process with “making” activities utilizing off-the-shelf, web-based technologies and devices. Our patient partner and teen advisors will provide guidance during the curriculum development. In Phase 2, we will form a research advisory board of adolescents with T1D, recruiting 8 additional members. We will train the advisory board members using the research training curriculum and work with them to engage with other adolescent stakeholders and researchers to develop ideas for research. Through this work, we will develop (1) a “maker”-based curriculum for research training for adolescents with T1D that can be adapted to children with other diseases or conditions; (2) a teen advisory board of adolescents with knowledge about research and leadership skills; and (3) a list of research topics of interest and ideas for potential studies.

Funder:
This project is funded by a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (4187-RUM).