By Kourtney Gilbert, program coordinator, SPI
As researchers, we work a lot with numbers on a page. These numbers often feel distant from the people they represent, or the policy and practices we hope to inform. For this reason, when the Social Policy Institute launched its Building on Benefits research project aimed at better understanding the benefits landscape for lower-paid and fast-growing healthcare jobs, we also formed an advisory committee to guide our work. We intentionally recruited individuals in health care jobs, such as home health aides and nursing assistants, to inform the survey and interview development, as well as the dissemination of results.
Though this is not the first SPI advisory committee, it is the first research advisory committee representative of the participants in the study. This process helped center real people’s lived experiences in the building of the study and in how we interpreted results.
SPI partnered with Paraprofessional Healthcare Institute (PHI) that aspires to create quality jobs for direct care workers to help form the research advisory committee. This organization recruited committee members by disseminating our informational flyer with a request for nominations for individuals who would add value to the committee. We received 11 nominations, nine of whom expressed interest in being a part of the committee. The individuals on the advisory committee held job titles such as: direct care worker, CNA, caregiver and registered behavior technician. As compensation for serving on the advisory committee, SPI offered a $100 stipend for each meeting. The advisory committee met four times between August 2021 and July 2022.
During the first meeting, we shared a draft of our first data collection tool- a survey to understand benefits available to and used by workers. We shared this survey prior to the first meeting and asked the committee to provide their input. They provided notes around comprehension of questions, relatability of questions, and their overall experience with taking the survey. Once this feedback was received the research team made all relevant changes in hopes of improving the survey.
During the second meeting, SPI shared preliminary findings in the form of discussion questions. These questions helped us gather their thoughts on the results from the survey. The feedback the advisory committee provided also guided the development of our second data collection tool- the interview guide.
During the third meeting, SPI shared the final findings from both the survey and the interviews. We felt it was important to share the findings with the advisory committee because they were an integral part in the creation of both data collection tools and in recruitment of participants for both the survey and interviews. During this meeting we highlighted the differences between the survey and interview findings, and also discussed the intersections between what the advisory committee mentioned and the information that was collected in the interviews.
We shared a one-pager during the final meeting created using data from the surveys and interviews. We asked them to reflect on the content and for suggestions or ideas of how to distribute our findings. For example, it was suggested that we share the information with unions and local organizations. We also invited the advisory committee to attend a webinar in which we presented the research project. Lastly, we solicited feedback from the advisory committee members about their experiences being on the committee.
This project emphasized for SPI that a human-centered approach with research is key to understand how the data collected directly impacts people. Throughout the four advisory committee meetings, the amount of passion for health care as a field was palpable.
“I love the work. The workers who do these jobs are doing it because they are beautiful people. They’re doing the job not for the money.”
Despite members of the advisory committee having great passion for their work, they reported receiving low wages for the amount of work they do. As one member said:
“There’s definitely compassion fatigue and even just with pay to balance that out. Mental health is so important and even more important in this field and we are taking care of people and make an impact on their lives but we also need to take care of ourselves and its having money for a rainy day and to take care of ourselves.”
In the wrap-up session of the advisory committee, members reported enjoying the experience of participating in the committee. One phrased their feeling about participation as follows:
“You’re giving us a voice. We’re finally getting a voice.”
The advisory committee was critical to develop research tools and in reflecting on the best practices for involving an advisory committee in research projects. SPI also learned the importance of flexibility in all aspects of the project. For example, the timeline for this project fluctuated as challenges with data cleaning and recruitment led to delays. Unfortunately, six members withdrew from the committee as a result of the delay. We kept our process flexible to accommodate these challenges. We also learned important strategies for integrating committee members, who were spread out across the country, into meetings. National representation was great for geographic representation on the committee, however, scheduling meetings that fit everyone’s schedule proved difficult at times. To combat this, we kept meetings at the same time on the same day.
Intentionally incorporating an advisory committee into this work played a critical role in our research process and significantly informed the findings. As a result, we can provide key insight for frontline workers in the direct care field around benefits that centers on worker experiences.