Understanding the patient journey to diagnosis of lung cancer.

OBJECTIVE: This research describes the clinical pathway and characteristics of two cohorts of patients. The first cohort consists of patients with a confirmed diagnosis of lung cancer while the second consists of patients with a solitary pulmonary nodule (SPN) and no evidence of lung cancer. Linked data from an electronic medical record and the Louisiana Tumor Registry were used in this investigation. MATERIALS AND METHODS: REACHnet is one of 9 clinical research networks (CRNs) in PCORnet®, the National Patient-Centered Clinical Research Network and includes electronic health records for over 8 million patients from multiple partner health systems. Data from Ochsner Health System and Tulane Medical Center were linked to Louisiana Tumor Registry (LTR), a statewide population-based cancer registry, for analysis of patient's clinical pathways between July 2013 and 2017. Patient characteristics and health services utilization rates by cancer stage were reported as frequency distributions. The Kaplan-Meier product limit method was used to estimate the time from index date to diagnosis by stage in lung cancer cohort. RESULTS: A total of 30,559 potentially eligible patients were identified and 2929 (9.58%) had primary lung cancer. Of these, 1496 (51.1%) were documented in LTR and their clinical pathway to diagnosis was further studied. Time to diagnosis varied significantly by cancer stage. A total of 24,140 patients with an SPN were identified in REACHnet and 15,978 (66.6%) had documented follow up care for 1 year. 1612 (10%) had no evidence of any work up for their SPN. The remaining 14,366 had some evidence of follow up, primarily office visits and additional chest imaging. CONCLUSION: In both cohorts multiple biopsies were evident in the clinical pathway. Despite clinical workup, 70% of patients in the lung cancer cohort had stage III or IV disease. In the SPN cohort, only 66% were identified as receiving a diagnostic work-up.

Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research.

BACKGROUND: Stakeholders (ie, patients, policymakers, clinicians, advocacy groups, health system leaders, payers, and others) offer critical input at various stages in the research continuum, and their contributions are increasingly recognized as an important component of effective translational research. Natural experiments, in particular, may benefit from stakeholder feedback in addressing real-world issues and providing insight into future policy decisions, though best practices for the engagement of stakeholders in observational studies are limited in the literature. METHODS: The Natural Experiments for Translation in Diabetes 2.0 (NEXT-D2) network utilizes rigorous methods to evaluate natural experiments in health policy and program delivery with a focus on diabetes-related outcomes. Each of the 8 partnering institutions incorporates stakeholder engagement throughout multiple study phases to enhance the patient-centeredness of results. NEXT-D2 dedicates a committee to Engagement for resource sharing, enhancing engagement approaches, and advancing network-wide engagement activities. Key stakeholder engagement activities include Study Meetings, Proposal Development, Trainings & Educational Opportunities, Data Analysis, and Results Dissemination. Network-wide patient-centered resources and multimedia have also been developed through the broad expertise of each site's stakeholder group. CONCLUSIONS: This collaboration has created a continuous feedback loop wherein site-level engagement approaches are informed via the network and network-level engagement efforts are shaped by individual sites. Emerging best practices include: incorporating stakeholders in multiple ways throughout the research, building on previous relationships with stakeholders, enhancing capacity through stakeholder and investigator training, involving stakeholders in refining outcome choices and understanding the meaning of variables, and recognizing the power of stakeholders in maximizing dissemination.