Key Features of Registry-Based Learning Systems
| Feature | Delivered by APEX COPD registry |
|---|---|
| Social network of patients and families encouraged to engage in the patient’s healthcare and supported by tools that enable them to track their health outcomes and support self-care | The APEX COPD registry provides rapid feedback of data to both patients and physicians to encourage engagement, support shared decision making, and facilitate self-management by enabling patients to track their disease over time. |
| Collaborative network of clinical teams that can provide care and who engage in a system providing longitudinal and comparative data | The APEX COPD registry comprises a collaborative network of primary care physicians, nurses, physician assistants, specialists, research scientists, and database experts to collect longitudinal, comparative, clinically relevant, and individual-level data. |
| Sharing of power and responsibility among patients, clinicians, and scientists for designing, governing and evaluating services to improve and research | The APEX COPD registry is overseen by 5 governing bodies to ensure collection of clinically relevant data, and ethically-sound research. |
| Digital collection and use of both clinical and patient-reported outcomes to guide care and as a basis for improvement, research, and public health policy | The APEX COPD registry collects data digitally from EHR and from patients in the form of on-line questionnaires and during the office visit. |
| Demonstration of measurable improvement in individual and public health outcomes through improved adherence to current evidence and rigorous trials of new approaches | The APEX COPD registry will track all relevant variables longitudinally to assess improvement in individual and public health outcomes. |
| Dissemination and translation of ideas and findings through publication in peer-reviewed journals, presentations and meetings, and outreach to patients, clinicians, researchers, and health policy analysts | The APEX COPD registry incorporates a team of communication specialists to ensure timely dissemination of research both at scientific/medical congresses and in peer-reviewed publications. |
APEX, Advancing the Patient Experience; COPD, chronic obstructive pulmonary disease; EHR, electronic health record.
Reproduced from Nelson EC, Dixon-Woods M, Batalden PB, et al. Patient focused registries can improve health, care, and science. 2021:354:i3319, with permission from BMJ Publishing Group Ltd.