Project Team Members: Christine Hill-Kayser, MD ( Penn PI) and Lisa Schwartz, PhD (CHOP PI), Lamia Barakat, PhD, Lauren Daniel,PhD, Linda Fleisher, PhD, MPH, Jill Ginsberg, PhD, Wendy Hobbie, RN, MSN, Linda Jacobs, PhD, Yimei Li, PhD, Dava Szalda, MD
Project Dates: 2015-2018
Adolescent and young adult (AYA) survivors of childhood cancer represent a growing and underserved population (1 in 600 young adults is a childhood cancer survivor) at risk for cancer recurrence, second cancers and other chronic health conditions (so-called “late effects”) of cancer treatment despite the vast resources used to cure them. AYA also demonstrate disengagement and loss to follow-up, health-harming behaviors, and deficits in knowledge about their cancer history and future risks. We will test the impact of AYA STEPS (Self-management via Texting, Education and Plans for Survivorship)–an innovative, technology-based intervention that will provide customized care plans and a tailored mobile health application to enhance survivorship self-management.
Project Team Members: Linda Fleisher, PhD, MPH; Alex Fiks, MD, MSCE; Katie Halkyard, MPH; Rachel Gruver, MPH
Project Dates: 2015-2016
As a 2015 CHOP Chair’s Initiative project, this study aims to develop a process to integrate evidence-based and evaluated health apps for families into pediatric care at CHOP in order to improve health outcomes. The major goals of this project are to develop a hospital-wide process to evaluate apps for introduction into clinical care and an evaluation of this process through a proof of concept implementation of two mobile health apps in which they will be “prescribed” to parents/patients by providers.
Project Team Members: Linda Fleisher, PhD, MPH; Katie Halkyard, MPH; Marisol Norris, PhD candidate, Drexel University; Mark Zonfrillo, MD, MSCE; Jessica Mirman, PhD
This study aimed to determine how parents/caregivers use existing materials to install child restraint systems (CRS), examined parent/caregiver perspectives on using smartphones as a tool to improve installation, and developed and user-tested a clickable mobile app. This project was implemented in four phases, which involved focus groups, a national survey, app prototype development, and prototype user-testing. Based on responses, parents/caregivers value visual, interactive resources for car seat installation beyond the user manual that are available on their everyday mobile devices. Further development and testing of the app prototype will be conducted in coordination with Safekids Worldwide.
Project Team Members: Linda Fleisher, PhD, MPH; Nancy Kassam-Adams, PhD; Flaura Winston, MD, PhD; Katie Halkyard, MPH; Nicole Chisholm-Fregene, BS
This project seeks to evaluate the effectiveness of a consumer-facing website that was developed for those with chronic diseases to increase their engagement in self-management and medication adherence. The main objective is to determine whether utilization of this website can impact behavioral and clinical outcomes of adults with Type 2 diabetes, one of the most common chronic illnesses among adults in the United States.
mHealth Intervention for ART Adherence and Sexual Risk Reduction among HIV+ YMSM
Project Team Members: Nadia Dowshen, MD
Project Dates: 2014-2019
This project examines key health behaviors of medication adherence and sexual risk among young men who have sex with men (YMSM) living with HIV/AIDS, to develop a mobile phone based intervention targeted at improving these health behaviors in the real times and places youth need support. AIM 1 will describe the incidence of STI co-infections and virologic failure and report the standardized risk of these outcomes across strata of HIV+ YMSM through retrospective chart review augmented by in-depth structured interviews for further understanding of key psychosocial and behavioral factors. Using focus groups of youth at high- and low-risk, selected based on findings from AIM 1, AIM 2 will explore how HIV+ YMSM use mobile technology, and their attitudes towards various mobile phone-based tools to improve adherence and reduce sexual risk. Delphi methodology will first be used in AIM 3 to convene a panel of mHealth and adolescent health experts to establish consensus guidelines for adolescent sexual health technology-based intervention development. These results, combined with youth input from AIM 2, will serve as a guiding framework for development of a new mHealth secondary prevention intervention for HIV+ YMSM. The new mHealth intervention composed of theory-driven elements, for example, including time and location-based reminders, and individual and group-based gaming incentives will then undergo usability testing consisting of (a) a focus group for specific feedback on design and user experience and then (b) a 12-month feasibility trial where 20 youth will have the application installed and usage, satisfaction, and clinical outcome data will be collected. In line with NIMH's research priorities, this proposal sets out to develop an innovative secondary prevention strategy targeting improved medication adherence and sexual risk reduction among HIV+ YMSM.
Positively Connected for Health (PC4H)
Project Team Members: Nadia Dowshen, MD (CHOP PI) and Helen Koenig, MD (Philadelphia Fight PI)
Project Dates: 2016-2021
A collaboration between Philadelphia Fight and CHOP, this project will reach underserved, hard-to-reach youth through three distinct social media interventions: 1) the iknowUshould2 platform, a web-based social media campaign that encourages HIV testing and linkage to care; 2) the Positively SmART mobile application (app) that will be used for HIV+ youth to increase retention in care and adherence to antiretroviral therapy and; 3) APPlify Your Health workshops, a digital health literacy program that uses pop-up ipad and smart phone labs to educate and support youth through new technologies who will be engaged in our social media interventions. As youth in Philadelphia account for the highest percentage of newly diagnosed HIV-infected persons, this intervention will aim to increase awareness of HIV status among high-risk youth, increase linkage to care among newly diagnosed and out of care HIV-positive youth and increase adherence and reduce viral load among HIV-positive youth through the following activities: 1.) Engage over 2000 young people through iknowUshould2 platform and social media sites about knowing their status and getting tested 2.) Provide rapid HIV testing over 1200 youth and identify 40 new positives through outreach and engagement efforts by CHOP and FIGHT’s 3.) Through APPlify Your Health Workshops enroll 125 high-risk HIV status unknown Youth into the iknowUshould2 campaign intervention to increase access to testing and linkage to care for identified positives 4.) Through APPlify Your Health Workshops, enroll 125 HIV+ Youth into the Positively SmART app intervention to increase retention in care and reduce viral load. 5.) Encourage active engagement in the Positively SmART app to provide ongoing, personalized support and encourage both self and group empowerment to increase medication adherence. CHOP and Philadelphia FIGHT propose a model of social media engagement that builds upon our combined expertise working with low-income, hard to reach youth and working with low-income populations around digital technologies. Through this demonstration project, we will offer a culturally competent, youthcentered model focused on education and access to testing, medical care, and participant empowerment with the goal of engaging and retaining vulnerable youth in HIV care.