Table 1.

Key Features of Registry-Based Learning Systems

FeatureDelivered 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-careThe 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 dataThe 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 researchThe 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 policyThe 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 approachesThe 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 analystsThe 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.