Though many programs have prepared patients for participation in research design and execution directed toward treatment choices, no programs currently focus on the unique requirements of research in the process of diagnosis and the choices that patients face during that process. There is currently no established curriculum or training program to help patients become patient partners, full partners in the efforts to eliminate the risk of diagnostic errors that may harm them.
SIDM and its collaborators propose to fill this void with the creation of a national training academy for patients and other relevant stakeholders who desire to become partners in research about diagnosis, especially comparative effectiveness research on diagnosis (e.g., choices patients face when confronted with unexplained symptoms). Through its strong connections to most researchers in diagnosis, SIDM aims to become the primary source for connecting well-trained and eager patient partners with the professional researchers who desire their talents.
This 18-month initiative includes six elements: recruitment and preparation of patient partners and research mentors; curriculum development; training and mentorships; promotion of patient partnerships with researchers; project evaluation and outcomes; and a plan for sustainability. Each element of the project has been designed from a patient-first and patient-centered perspective, including project goals and methods.
The project team will deliver important outcomes. These outcomes result from the project objectives and the execution of the corresponding strategies. Specifically, the project will result in these outcomes:
- Patient partners who are trained and ready for inclusion in diagnostic research projects
- Stronger partnerships between patient partners and researchers
- Stronger partnerships between the diagnostic error community and disease-based organizations
- A growing community of patient partners engaged in diagnostic research
- Establishment of an academy to develop patient leaders in diagnostic research
The project includes collaborations with leading national health organizations, some of which are members of the Coalition to Improve Diagnosis in Medicine, led by SIDM. Results of this project will be widely shared through conferences, publications, and social media.