Patient-led research allows individuals affected by various conditions to actively participate in finding answers to their health concerns. By driving their own research initiatives, patients can ensure that the questions they deem most critical are addressed. This approach has proven successful in several instances, such as the Black Panther Party’s efforts to combat sickle cell disease in the 1970s and the HIV/AIDS movement in the 1980s.
Patient-Led Research Collaborative (PLRC)
One notable example is the Patient-Led Research Collaborative (PLRC), which emerged from a long COVID support group. Members with scientific experience led the initiative, releasing their first report in May 2020 to document common symptoms among the group’s hundreds of members. Advocates argue that patient-led and patient-informed research benefits both patients and scientists. For patients, it addresses questions that directly affect their daily lives, making the research more meaningful. For scientists, it provides valuable insights and potentially novel approaches to solving complex health issues.