Stakeholder Engagement and Participant Satisfaction in SPARK Research Match Studies

Poster Presentation
Saturday, May 4, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
J. Toroney1, B. Vernoia2, J. K. Law1, C. W. Lehman2, P. Feliciano2 and W. K. Chung3, (1)Medical Informatics, Kennedy Krieger Institute, Baltimore, MD, (2)Simons Foundation, New York, NY, (3)Pediatrics, Columbia University, New York, NY
Background: Online surveys are a fast-growing method for conducting research as digital technologies improve and access to such platforms expand. However, little is known about participants’ experience with and attitudes towards online research. To capture this information, it is important to acquire participant feedback after completing an online research study. Such information will lay the groundwork for successful recruitment and retention in online research studies now and in the future. The Simons Foundation Powering Autism Research for Knowledge (SPARK) provides an ideal platform to examine factors related to participant engagement and experience. SPARK is a collaborative, online study that enrolls individuals with a professional diagnosis of autism and their family members into an autism research cohort. With over 50,000 participants with ASD, SPARK offers the opportunity to facilitate autism research broadly by assisting researchers with study recruitment, called “research match.”

Objectives: Utilize data from participant feedback surveys to identify common themes across family experiences and evaluate satisfaction participating in online research.

Methods: SPARK facilitates recruitment via research match by building online studies to which eligible participants are invited. After participants complete an online study, the following screen provides a feedback survey consisting of three questions. The first two questions ask for a quantitative rating 1 to 5 (5 being the highest) on how important the study’s research topic is to them and their experience participating in the study. The third question is an open-ended text box for comments. For each research match study, ratings for the first two questions were averaged to yield a final rating. The open-ended comments were qualitatively analyzed to capture common themes within and across studies.

Results: All online studies were rated highly for importance of the research topic and participation experience (see table 1).

In the open text comments, four common themes were found across the online studies (see table 2). The first theme was an expression of gratitude for the research SPARK does and a sense of pride in participating in autism research.

The second theme includes suggestions to modify and improve the study. Participant suggestions include changing or adding questions, shortening the length of a survey, and adding “don’t know/not sure” or “not applicable” as an answer option. Participants also suggested adding more open text fields so they could provide richer, more meaningful answers.

A third common theme is the desire for families to obtain survey results from their participation in a study. Lastly, families used the feedback survey to share additional information with researchers to further clarify their survey responses.

Conclusions: Participant feedback allows researchers to understand the perspectives and concerns of parents, children, and young adults with autism when completing an online survey, which is critical to improving user experience as well as overall data quality. By addressing participant comments and suggestions, the research match team can improve future surveys and facilitate participant engagement and retention in SPARK. With research focusing on more patient-centered approaches, stakeholders and researchers can work together to improve autism research and the participant experience.