Chuck McAvoy is a longtime Kaiser Permanente member and retired employee. Chuck is also one of the longest-standing members of the Kaiser Permanente Research Bank’s (KPRB) Community Advisory Board (CAB) and the Access Review Committee (ARC).
The Research Bank’s Community Advisory Board is a group of 13 individuals from diverse communities who listen and respond to the perspectives of many communities served by Kaiser Permanente. The Access and Review Committee reviews applications from scientists who want to use Research Bank data and/or samples. ARC members review and discuss applications and decide which applications have strong enough scientific goals and methods to be allowed to use Research Bank resources. Most ARC members are scientists, but the group also includes two CAB members who provide the perspectives of non-scientists.
How did Chuck come to serve on the KPRB CAB and ARC?
What initially motivated Chuck to participate, and what still motivates him today, is the promise of genomic medicine, and the information he learns as a CAB and ARC member. Chuck explained, “When I understood what the goals were and what the whole genomics project was all about, I could see that this is the next huge revolution in medicine; this is the penicillin of today.”
After retiring from Pacific Bell, Chuck was recruited to work throughout Kaiser Permanente as an IT infrastructure engineer. Hired in 2000, Chuck was part of the team that worked to make sure that the new electronic health record system worked seamlessly in all eight Kaiser Permanente regions. Chuck also raced motorcycles with great success throughout the U.S.
Becoming an advocate for people with disabilities
Very sadly, motorcycle racing ended with an accident in 1983. The accident caused a permanent spinal cord injury that resulted in Chuck relying on the use of a wheelchair. After a period of rehab, Chuck’s passion shifted from motorcycle racing to becoming a tireless advocate for people with disabilities. “I kind of discovered that giving back to my community was what I needed to do,” he said.
When Chuck was still at Pacific Bell, he started an employee association for people with disabilities. Once he started his second career at Kaiser Permanente, he brought his activism with him and co-created and co-led the first Kaiser Permanente employee association for people with disabilities. Chuck then led the group for nine years, advocating for issues related to Kaiser Permanente employees and members with various disabilities, including mobility, hearing, and sight issues. Being a disability advocate leader both inside and outside of Kaiser Permanente made him a natural choice to be a member of the Kaiser Permanente Research Bank CAB.
From its earliest days, the CAB has had a focus on issues related to the ethical, legal, and social implications of creating a biobank. Chuck has worked with colleagues to provide feedback on recruitment materials and consent issues that help improve the ways the Research Bank operates. On both the CAB and ARC, Chuck continues in his role as advocate, providing a voice for members and patients, and making sure the Research Bank is attentive and responsive to the needs of the diverse Kaiser Permanente membership. Chuck truly appreciates being an active part of the Research Bank and its genomic research. “It’s a huge revolution and we’ll change medicine dramatically,” he said. “And gosh, I can be a little part of that? You know, how cool is that?”
