Citizen Health: Action, Network & Global Engagement (CHANGE)
Scientific Study Title:
Integrated KT 2.0: Development of an Online Citizen Science Portal
Linda Li, PT, PhD (UBC), Leanne Currie RN, PhD (UBC), Erin Michalak PhD (UBC).
Start and End Date:
August 2018 to August 2021
Why do this research?
The vision of Citizen Health: Action, Network & Global Engagement (CHANGE) is to transform the way patients and the public engage in making research questions with the use of a new web app. Patient/public engagement in research happens when citizens are actively involved in all aspects of research (governance, priority setting, conducting research, and/or sharing results). It is a key aspect of integrated knowledge translation. The involvement can be a rewarding and beneficial experience for patients/public when we plan, support and value their input. CHANGE will maximize that experience by introducing a new web app that will allow patients and informal caregivers to interact not only with one another but also with researchers. It will allow for real-time health data collection to help make research questions. This project has the potential to change how we “do” and “study” research.
What will be done?
CHANGE will have two tests. The first test will be a 7-day usability test. Its goal will be to understand user-friendliness of the web app. Participants will get the app and a Fitbit Flex-2 wristband and will provide data for 7 days. They will set up the app with instructions co-developed by patient-partners and the web developer. At the same time, they will speak about their thoughts while setting up the web app. We will time and videotape the setup sessions and a postdoctoral fellow will take field notes. We will use the information collected to address any errors, review the setup, and provide instruction on the 7-day use. At the end of the setup, participants will complete a system usability scale. We will interview them about their experiences which will help us refine the web app if needed. The second test will be a 3-month feasibility assessment. We will interview the participants after they have used the refined web app for 3 months. Also, we will look at usage of the app which will include the frequency, the length of time and how the participants use the web app. We will assess the recruitment rates and the types of issues participants report to determine the implementation aspect of feasibility. A postdoctoral fellow will conduct the interviews for 30 minutes by telephone. The focus of the interviews will be on participants’ experiences with app.
Who is funding this research?
BC SUPPORT Unit is providing funding.
Who is involved?
For the usability test, we will recruit 10 men and 10 women in BC with at least one chronic disease or type of disability (e.g., poor vision, mobility disability). For the feasibility assessment, we aim to recruit 50 eligible participants. Participants are eligible if they: 1) have at least one chronic disease, have one type of disability, or are informal caregivers, 2) are 19 years of age or older, and 3) live in British Columbia.
Chris Shaw MSc, PhD (SFU), Diane Gromala MFA, PhD (SFU)
Hussein Mamdani (Arthritis Research Canada)
How do people get involved?
To recruit participants, we will use newsletters, both print and digital, and social media accounts of patient organizations, like JointHealth, and the BC SUPPORT Unit. Also, we will look for other ways to recruit participants using advice from the BC SUPPORT Units’ patient engagement lead (Ms. Collen McGavin), the patient council, and patient partners. If you would like to take part in this study or seek more information, please contact: Hussein Mamdani, 604-207-4007, firstname.lastname@example.org