Welcome to The Chicagoland Evaluation Association Week on AEA365! This week’s postings reflect the diversity of our Local Affiliate members and their work, using a lens of cultural responsiveness evaluation with various types of communities. We are excited to share some of our projects along with lessons learned, hot tips, and rad resources from our projects.
–Casey Solomon-Filer, Vice President, and Asma Ali, Past- President
Greetings! My name is Amanda Dougherty, Research Specialist at Sinai Urban Health Institute (SUHI), the research arm of Sinai Chicago. SUHI’s commitment to health equity involves using community-based participatory research methods in evaluation, with community members in an advisory capacity. For the first time, we engaged community members in the qualitative evaluation of Sinai’s Center for Diabetes and Endocrinology.
Funded by the Robert Wood Johnson Foundation, we’re evaluating the integration of the HSTRC Research Agenda’s seven priority components, and seeking to determine how this approach improves patient outcomes. We recruited seven community members for our Patient Advisory Council (PAC) to advise our patient interview guide, code patient interviews and participate in data sense-making sessions. Extensive and time-intensive groundwork was laid before analyzing data with our PAC members. Because the PAC members did not have any prior evaluation or research experience, we critically thought about how we could ensure their full participation. While our project is still ongoing, we have already learned many lessons from this engagement:
Lessons Learned
From PAC recruitment to research training we have learned several lessons about the engagement and empowerment of community members in the research process.
- Flexibility with research requirements to ensure broader PAC participation. Initially we required PAC members to both have a diabetes diagnosis and be current Center patients. However, the Center did not have as many patients to recruit with this criteria. While we still required members to have a diabetes diagnosis, we opened recruitment to referrals from other community-based organizations.
- Prioritizing and Honoring PAC members’ commitment to the project through compensation. Equitable compensation is a requirement we set for the project. PAC members’ time is valuable, and the fiscal investment in it reinforces our meaningful connection with them. We also paid for any technology needed. Finally, we ensured participants’ PAC meeting times were set based on the group’s availability, with staff availability considered second.
- Develop participants’ research and employment skills through the project. Because a majority of the PAC are older adults who had not used Zoom or even a laptop before, we dedicated individual, confidential technology training time for members. The PAC was also directly involved with human subjects research with access to patient health information (PHI), which meant adding them to the Institutional Review Board (IRB) protocol with Sinai Chicago. Working with our IRB Chair was integral to making this process inclusive, as he helped champion our use of a community-level human subjects research training, developed for community members with no previous research experience.
- Advocate for continuous improvement in PAC participation and research processes. Community guidelines were established as a group to ensure meaningful participation including: asking questions often, SUHI staff avoiding jargon, welcoming vulnerability and openness. These guidelines were re-iterated every meeting. Also, while meeting every other month has worked for project tasks, we are considering meeting more often to ensure PAC members are confidently using their newly acquired research and evaluation skills.
Finally, our coding process would have benefitted from more allotted time. Ultimately, the coding process was split up into two meetings, which allowed us to improve the process between meetings. Our key success was splitting the group into three smaller Zoom breakout sessions to analyze particular transcript sections, and then setting aside additional time at the end for group discussions on what was coded and why.
Rad Resources
The CIRTification training is our new go-to resource for training community researchers, as it provides all the critical information necessary in an easily digestible format for lay audiences.
CIRTification Training – Human Subjects Research training for community members provided by the UIC Center for Clinical and Translational Sciences
The American Evaluation Association is hosting Chicagoland Evaluation Association (CEA) Affiliate Week. The contributions all this week to AEA365 come from CEA members. Do you have questions, concerns, kudos, or content to extend this AEA365 contribution? Please add them in the comments section for this post on the AEA365 webpage so that we may enrich our community of practice. Would you like to submit an AEA365 Tip? Please send a note of interest to AEA365@eval.org. AEA365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators. The views and opinions expressed on the AEA365 blog are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of the American Evaluation Association, and/or any/all contributors to this site.