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.

Seasonal variation in blood pressure control across US health systems.

OBJECTIVE: We aimed to characterize seasonal variation in US population-based blood pressure (BP) control and BP-related metrics and evaluate the association between outdoor temperature and BP control variation. METHODS: We queried electronic health records (EHRs) from 26 health systems, representing 21 states, to summarize BP metrics by quarters of 12-month periods from January 2017 to March 2020. Patients with at least one ambulatory visit during the measurement period and a hypertension diagnosis during the first 6 months or prior to the measurement period were included. Changes in BP control, BP improvement, medication intensification, average SBP reduction after medication intensification across quarters and association with outdoor temperature were analyzed using weighted generalized linear models with repeated measures. RESULTS: Among 1 818 041 people with hypertension, the majority were more than 65 years of age (52.2%), female (52.1%), white non-Hispanic (69.8%) and had stage 1/2 hypertension (64.8%). Overall, BP control and process metrics were highest in quarters 2 and 3, and lowest in quarters 1 and 4. Quarter 2 had the highest percentage of improved BP (31.95 ±â€Š0.90%) and average SBP reduction after medication intensification (16 ±â€Š0.23 mmHg). Quarter 3 had the highest percentage of BP controlled (62.25 ±â€Š2.55%) and lowest with medication intensification (9.73 ±â€Š0.60%). Results were largely consistent in adjusted models. Average temperature was associated with BP control metrics in unadjusted models, but associations were attenuated following adjustment. CONCLUSION: In this large, national, EHR-based study, BP control and BP-related process metrics improved during spring/summer months, but outdoor temperature was not associated with performance following adjustment for potential confounders.

Comparing ascertainment of chronic condition status with problem lists versus encounter diagnoses from electronic health records.

OBJECTIVE: To assess and compare electronic health record (EHR) documentation of chronic disease in problem lists and encounter diagnosis records among Community Health Center (CHC) patients. MATERIALS AND METHODS: We assessed patient EHR data in a large clinical research network during 2012-2019. We included CHCs who provided outpatient, older adult primary care to patients age ≥45 years, with ≥2 office visits during the study. Our study sample included 1 180 290 patients from 545 CHCs across 22 states. We used diagnosis codes from 39 Chronic Condition Warehouse algorithms to identify chronic conditions from encounter diagnoses only and compared against problem list records. We measured correspondence including agreement, kappa, prevalence index, bias index, and prevalence-adjusted bias-adjusted kappa. RESULTS: Overlap of encounter diagnosis and problem list ascertainment was 59.4% among chronic conditions identified, with 12.2% of conditions identified only in encounters and 28.4% identified only in problem lists. Rates of coidentification varied by condition from 7.1% to 84.4%. Greatest agreement was found in diabetes (84.4%), HIV (78.1%), and hypertension (74.7%). Sixteen conditions had <50% agreement, including cancers and substance use disorders. Overlap for mental health conditions ranged from 47.4% for anxiety to 59.8% for depression. DISCUSSION: Agreement between the 2 sources varied substantially. Conditions requiring regular management in primary care settings may have a higher agreement than those diagnosed and treated in specialty care. CONCLUSION: Relying on EHR encounter data to identify chronic conditions without reference to patient problem lists may under-capture conditions among CHC patients in the United States.

Gaps in Well-Child Care Attendance Among Primary Care Clinics Serving Low-Income Families.

BACKGROUND AND OBJECTIVES: It is unclear which specific well-child visits (WCVs) are most frequently missed and whether age-specific patterns of attendance differ by race or insurance type. METHODS: We conducted a retrospective cohort study of children 0 to 6 years old between 2011 and 2016 within 2 health networks spanning 20 states. WCVs were identified by using International Classification of Diseases, Ninth and 10th Revisions and Current Procedural Terminology codes. We calculated adherence to the 13 American Academy of Pediatrics-recommended WCVs from birth to age 6 years. To address data completeness, we made 2 adherence calculations after a child's last recorded WCV: 1 in which we assumed all subsequent WCVs were attended outside the network and 1 in which we assumed none were. RESULTS: We included 152 418 children in our analysis. Most children were either publicly insured (77%) or uninsured (14%). The 2-, 4-, and 6-month visits were the most frequently attended (63% [assuming no outside care after the last recorded WCV] to 90% [assuming outside care]), whereas the 15- and 18-months visits (41%-75%) and 4-year visit (19%-49%) were the least frequently attended. Patients who were publicly insured and uninsured (versus privately insured) had higher odds of missing WCVs. Hispanic and Asian American (versus non-Hispanic white) patients had higher odds of attending WCVs. DISCUSSION: The 15- and 18-month WCVs as well as the 4-year WCV are the least frequently attended WCVs. The former represent opportunities to identify developmental delays, and the latter represents an opportunity to assess school readiness.

Lessons Learned from Developing a Patient Engagement Panel: An OCHIN Report.

There is renewed interest in patient engagement in clinical and research settings, creating a need for documenting and publishing lessons learned from efforts to meaningfully engage patients. This article describes early lessons learned from the development of OCHIN's Patient Engagement Panel (PEP). OCHIN supports a national network of more than 300 community health centers (CHCs) and other primary care settings that serve over 1.5 million patients annually across nearly 20 states. The PEP was conceived in 2009 to harness the CHC tradition of patient engagement in this new era of patient-centered outcomes research and to ensure that patients were engaged throughout the life cycle of our research projects, from conception to dissemination. Developed by clinicians and researchers within our practice-based research network, recruitment of patients to serve as PEP members began in early 2012. The PEP currently has a membership of 18 patients from 3 states. Over the past 24 months, the PEP has been involved with 12 projects. We describe developing the PEP and challenges and lessons learned (eg, recruitment, funding model, creating value for patient partners, compensation). These lessons learned are relevant not only for research but also for patient engagement in quality improvement efforts and other clinical initiatives.