The Decision to Participate in EHR Research: Factors Important to Adults with ASD

Background: Electronic health records (EHR) can potentially provide large amounts of clinical data to researchers investigating autism spectrum disorders (ASD). Inclusive research design can lead to increased participant engagement and better outcomes. However, little research has investigated the perspectives of adults with ASD on sharing their EHR for research. These individuals may have much to gain from research participation, but they have many legitimate concerns. Understanding their preferences may help researchers enact more effective informed consent procedures, effect higher levels of participant engagement and ultimately, produce greater benefits.

Objectives:

• To investigate the preferences of young adults with an autism spectrum disorder (ASD) regarding research use of EHR data.
• To compare the preferences of adults with ASD with the preferences of young adults who are neurotypical (NT)

Methods: Adults with ASD and NT adults, aged 18-40, were invited to participate in an online survey about preferences for research using EHR. 207 NT adults completed the survey. As of submission, 129 adults with ASD have completed the ongoing survey with a recruitment goal of 200.

The survey uses a discrete choice experiment (DCE) to assess preferences for studies using EHR. A DCE uses random utility theory to explain choices individuals make. The DCE presents a series of questions asking participants to compare research studies and choose the one they prefer. Each study is depicted with different combinations of attributes that may influence the decision to share EHR. Combinations are generated using an experimental design algorithm that statistically varies combinations to estimate the probability that an individual will choose a specific option. Analyses reveal which attributes are most and least important to participants. Additional survey questions ask about demographics, adaptive skills, and healthcare experiences.

Results: DCE analysis results will be presented by plotting average preference weights by attribute and study population. Preferences of the two groups will be compared. Associations between preferences and demographic factors or health and behavioral variables will be explored.

Results for the NT group show significant preferences for research that uses deidentified data, is conducted by university researchers, investigates topics important to the individual, and returns study results. Preliminary data for the ASD group is inconclusive, possibly due to insufficient power. Current data shows less pronounced preferences which trend similarly to those of the NT group except for a preference for research using identifiable data.

Conclusions: Preliminary results indicate that individuals with ASD may be more likely to participate in research using identifiable data which is conducted by university researchers. Study topics important to participants and the return of study results may also influence their decision to participate in a study. Understanding the preferences of potential study participants with ASD may inform research design leading to increased participation rates and more impactful outcomes.