Date Presented 03/26/20
The purpose of this presentation is to share the results of a two-year priority-setting PCORI engagement award conducted in collaboration with the autistic adult community. Engagement lessons learned will inform future research activities with this population. Products shared include an engagement and compensation guide and examples of effective engagement activities.
Primary Author and Speaker: Teal Benevides
Additional Authors and Speakers: Stephen Shore
BACKGROUND AND PURPOSE: Autistic adults* have been marginalized and under-represented in research, and health outcomes for this population are dismal (e.g. Bilder et al., 2013; Croen at al., 2015). It is imperative to provide voice to the priorities that the adult autism community believe are next research steps to address health outcomes. Our Project Team, comprised of autistic and non-autistic members, implemented a participatory action research approach. The goals of this project were to: 1). Identify research priorities desired by the adult autism community for future patient-centered studies; 2). Identify preferences for engagement when incorporating autistic adults in the research process. The purpose of this presentation is to focus on the process of engagement in research and lessons learned to inform future patient-centered outcomes research activities.
METHODS USED TO ENGAGE STAKEHOLDERS: Our Project Team, including both autistic and non-autistic team members, used participatory action research methods to enhance stakeholder engagement. PAR relies on qualitative and quantitative methods. We used: large online survey methods (n=249), two large facilitated meetings with stakeholders (n>50 for each), three small focus groups with autistic community members (total n=26), and action steps driven by community preferences through the two-year project period. Member checking of results through an 18 member Community Council of autistic adults led to additional clarification of priorities. The methods discussed in this presentation will focus on those used to engage both the research team and the research participants.
RESULTS: Respondents in our multi-method engagement project reported that lack of mutual respect and trust between researchers and autistic adults inhibited participation and involvement in research activities. Undermining actions included: lack of reporting results in a way that the autism community could understand or benefit from, lack of adequate compensation to be involved as research collaborators or participants, and lack of involvement in research decisions. Following this work to engage the autistic community, the Community Council contributed to the writing and development of an “Engagement and Compensation Guide”, which has been made freely available to researchers and providers to increase trust and enhance engagement of autistic stakeholders*. Engagement successes came from: communication adaptations to email and meetings to enhance participation of autistic team members; compensation as a necessary component of the grant budget, demonstrating respect of expertise of autistic partners; and clear opportunities to be involved, to include but not limited to human subjects research training, opportunities for authorship and review of materials, and promotion of unique skills and abilities. Engagement barriers included: system limitations for payment at university systems that impacted Community Council members; management of competing needs (e.g. when a person’s accommodation interfered with the participation of another member); institutional review board confusion related to the methods used; and insufficient time to support team members in the engagement process.
CONCLUSION: Researchers should be aware of and respect the significant needs expressed by the autism community related to inclusion in the research process. Engagement requires open communication, flexibility in implementation of processes and procedures, and humility to ask for input and adapt existing research activities.
*The term ‘autistic adult’ is used respectfully at the desire of our autistic Community Council members to reflect identity-first language, as opposed to person-first language used within healthcare settings.
References
Bilder, D., Botts, E.L., Smith, K.R., Pimentel, R., Farley, M., Viskochil, J., McMahon, W.M., Block, H., Ritvo, E., Ritvo, R., & Coon, H. (2013). Excess mortality and causes of death in autism spectrum disorders: A follow up of the 1980s Utah/UCLA Autism Epidemiologic Study. Journal of Autism and Developmental Disorders, 43, 1196-11204. doi: 10.1007/s10803-012-1664-z
Croen, L.A., Zerbo, O., Qian, Y., Massolo, M.L., Rich, S., Sidney, S. & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, online first, 1-10. doi: 10.1177/1362361315577517
