In 2014, the University of Washington BOLD team received an award from the independent nonprofit Patient-Centered Outcomes Research Institute (PCORI) to conduct a research project to identify the most effective ways to involve patients in the beginning stages of medical research – specifically in identifying the research agenda and prioritizing research topics for action. Historically, the patient voice has been missing in this initial stage of research design. As a result, what matters most to patients may not have been reflected in research studies. The project team reached out to BOLD Registry participants at Kaiser Permanente, Northern California and Henry Ford Health System in Detroit, Michigan, to take part in a research study that would help us learn more about how to involve patients in identifying topics for research.
As a first step, we mailed BOLD Registry participants at Kaiser and Henry Ford a list of previously identified topics for back pain research. This list had been complied by clinicians treating back pain patients. We asked BOLD participants at Kaiser and Henry Ford to tell us what they thought were the most important topics for research based on this previously generated list. Participants were also invited to add new topics to the list they thought were missing but important.
924 individuals participated, and the end result was a new list of research priorities, generated by patients with back pain. The final top priorities identified were:
As a follow-up to this initial activity, we asked individuals if they were interested in taking part in a second phase of our work, by participating in an in-person focus group, completing additional mailed surveys, or participating in an online community. This phase of our work will help us further explore different ways to involve patients in identifying and prioritizing research topics allowing for more interaction between people.
Do you have personal experience with back pain, or experience caring for someone with back pain? We need your expertise! Contact us to learn how you can get involved.