The Inborn Errors of Collaborative Stakeholder Network (IBEMCSN) is a network of patients, their family members and caregivers, providers, public health professionals, and scientists focused on working together to improve treatment and outcomes for individuals with inborn errors of metabolism (IBEM). Patients and their family members are equal partners in developing solutions to the issues that concern them most.
The inclusion of patients and their family members (patient partners) is a paradigm shift from research and clinical care that is provider-driven to one where patient partners have a voice. Funded by a grant from PCORI, the Patient-Centered Outcomes Research Institute, the IBEMCSN focuses on improving outcomes that are important to patients. Traditional medical research hasn’t been able to answer the questions that patients and their doctors face daily. Reliable information is not always available to patients, or those who care for them, in ways they can understand or use most effectively. Engaging patient partners in research ensures that the questions being asked, and the work being done, results in meaningful, sustainable outcomes for individuals affected by IBEM.
The Michigan Public Health Institute (MPHI) manages the IBEMCSN. For more information about MPHI and our work, please visit our website.