A spinal cord injury research conference was held in June of 2024 in Washington, D.C., for experienced and new data collectors and managers of research hospitals located throughout the United States. The Spinal Cord Injury Model Systems (SCIMS), along with The National Spinal Cord Injury Statistical Center (NSCISC) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) were in attendance. June 11 brought 18 different research hospitals together and began introductions and discussions with new and seasoned data collectors about their experiences with the Model Systems projects.
Many of the attendees had the chance to listen to stories from others and pick up tips on how to deal with participants and how they were handled from all of the research locations.
At the beginning, we were welcomed by the NIDILIRR Project Officers and were provided opportunities to listen to speeches on recruiting and retaining data collectors. Other topics presented were on how we maintain boundaries within our interactions with participants and the conversations we have with them. There were breakout times that included Q&A moments for everyone, which seemed to be one of the more popular events. Everyone had a chance to speak and discuss their research and successes that were occurring at their hospitals. The experienced data collectors panel answered and responded to questions from the 100+ attendees.
The first afternoon welcomed the experienced Data Collectors. We listened to the heads of the conference and interacted with conference speakers and panel members on topics such as boundaries within the interview process, bowel and bladder sensitivity issues, pain and it’s common origins, and self-care and mobility functions. These topics were presented by doctors from Houston, TX., Birmingham, Al., Miami, Fl., And Chicago, IL. Discussion groups formed by years of data collector experience and MetroHealth’s Megan Hammond Nechols led a group of new data collectors with SCIMS experience of 1 year and less. A wrap-up of the day was presented, and everyone began creating plans for dinner while looking forward to day 2.
As day two rolled around and breakfast was complete, we mingled among members and new friends from all of the 18 research facilities. Cindy Cai, the director of MSKTC (Model Systems Knowledge Translation Center), addressed the importance of resources and opportunities for people with and without disabilities. After, and with the number of research studies and programs concerning spinal cord research being discussed and displayed, another breakout session included topics on different portions of interviewing and the data we collect, neuro-classification practices, and a shift to performing digital interviews as a new option.
After lunch, an open mic session was conducted with a Program Managers Panel from Denver, Co, and Chicago, IL. They discussed the topics of tracking and finding participants and closing the deal. Fun games were played with the group to win prizes brought in from all of the hospitals with their hospitals’ names and logos: shirts, pens, backpacks, drinking mugs, keychains, and many more items were there for the taking. Everyone left with items from the Research Centers and many good memories. A final breakout session was presented, which included interview variable questions and explanations and issues specific to new and smaller research centers were discussed. Other topics included Quality Control Certifications and how to understand the NSCISC Web system. A wrap-up of the 2-day conference was also presented before handshakes, hugs, and smiles were exchanged with goodbyes that ended the Washington, D.C. Spinal Cord Injury Conference.
