Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care.

BACKGROUND: Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician's view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning. METHOD: A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet's AC1 and Cohen's kappa statistic. We considered agreement coefficients 0.61-0.8=good agreement and 0.81-1.00=excellent agreement. RESULTS: The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88). CONCLUSIONS: The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning.

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute.

PURPOSE: To provide an overview of PCORI's approach to engagement in research. METHODS: The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research. RESULTS: To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet. CONCLUSION: PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

Patient and family involvement in contemporary health care.

OBJECTIVE: The objective of this article was to provide a guide to health care providers on patient and family involvement in health care. METHODS: This article evaluated the latest published studies for patient and family involvement and reexamined the objectives, the requirements for achieving these objectives, and the evidence of how to involve patients and families. RESULTS: Critical components for patient safety include changing the organizational culture; including patients and families on teams; listening to patients and families; incorporating their input into leadership structures and systems; providing full detail about treatment, procedures, and medication adverse effects; involving them on patient safety and performance improvement committees; and disclosing medical errors. CONCLUSIONS: The conclusion of this article is that, for the future, patient and family involvement starts with educating patients and families and ends with listening to them and taking them seriously. If patient and family input is emphatically built into systems of performance improvement, and if patients and families are taken seriously and are respected for their valuable perspectives about how care can be improved, then organizations can improve at improving. Resources in health care are in short supply, yet the resources of patient and family help and time are almost limitless, are ready to be tapped, and can have a huge impact on improving the reliability and overall success for any health care organization.