Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network.

BACKGROUND: Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. OBJECTIVE: We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. SETTING: The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. RESULTS: Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. DISCUSSION: The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

Can evidence drive health equity in the COVID-19 pandemic and beyond?

Using scoping review methods, we systematically searched multiple online databases for publications in the first year of the pandemic that proposed pragmatic population or health system-level solutions to health inequities. We found 77 publications with proposed solutions to pandemic-related health inequities. Most were commentaries, letters, or editorials from the USA, offering untested solutions, and no robust evidence on effectiveness. Some of the proposed solutions could unintentionally exacerbate health inequities. We call on health policymakers to co-create, co-design, and co-produce equity-focussed, evidence-based interventions with communities, focussing on those most at risk to protect the population as a whole. Epidemiologists collaborating with people from other relevant disciplines may provide methodological expertise for these processes. As epidemiologists, we must interrogate our own methods to avoid propagating any unscientific biases we may hold. Epidemiology must be used to address, and never exacerbate, health inequities-in the pandemic and beyond.

Progress towards narrowing health disparities: first steps in sorting out infant mortality trend improvements among American Indians and Alaska Natives (AI/ANs) in the Pacific Northwest, 1984-1997.

BACKGROUND: Most AI/AN infant mortality rates (IMRs) remain higher than white rates. The Northwest Portland Area Indian Health Board (NPAIHB), serving 43 tribes, CDC and the Washington, Oregon, and Idaho health departments investigated AI/AN infant survival. METHODS: NPAIHB completed linking computerized birth certificate and birth-death files. We used death and birth cohorts, StatXact and SAS to compare 3-state resident, single and multi-year IMRs, basing infant race on mother's race, regardless of Hispanic origin. We used CDC's National Infant Mortality Surveillance ICD-9 categories for cause-specific rates. RESULTS: From 1984 to 1997, about 2100-2800 AI/AN births occurred annually. From 1984 to 1990, AI/AN IMRs were 1.8-2.4 fold higher than white rates. Then aggregate-year IMRs significantly declined from 16.3 in 1984-1987 to 6.7 in 1994-1997 (P < 0.0001), approaching the 5.6 1994-1997 white rate. In 1998 the AI/AN IMR rate increased to 10.3. AI/AN SIDS and respiratory distress syndrome rates decreased significantly, respectively, from 8.1 in between 1984-1987 to 2.3 in 1994-1996 and from 1.8 in 1984-1987 to 0.3 in 1991-1993, then leveled off. Significant rate declines occurred among most demographic, risk behavior, birthweight, gestational-age, reproductive risk, birth spacing, and labor/delivery sub-groups. Among others, AI/AN residents in Idaho as well as those who received no prenatal care and who had 0-5 month birth spacing experienced no improvements. CONCLUSIONS: These uncommon rate declines imply multi-factorial improvements among Northwest AI/ANs. Community-level surveillance and interventions before conception through post-partum may further improve health. Collaborative efforts need to be maintained to continue to monitor changes in AI/AN infant health and maternal characteristics.

Patterns of Electronic Portal Use among Vulnerable Patients in a Nationwide Practice-based Research Network: From the OCHIN Practice-based Research Network (PBRN).

BACKGROUND: Underserved patient populations experience barriers to accessing and engaging within the complex health care system. Electronic patient portals have been proposed as a potential new way to improve access and engagement. We studied patient portal use for 12 consecutive months (365 days) among a large, nationally distributed, underserved patient population within the OCHIN (originally created as the Oregon Community Health Information Network and renamed OCHIN as other states joined) practice-based research network (PBRN). METHODS: We retrospectively assessed adoption and use of Epic's MyChart patient portal in the first 12 months after MyChart was made available to the OCHIN PBRN. We examined electronic health record data from 36,549 patients aged ≥18 years who were offered a MyChart access code between May 1, 2012, and April 30, 2013, across the OCHIN PBRN in 13 states. RESULTS: Overall, 29% of patients offered an access code logged into their MyChart account. Superusers (minimum of 2 logins per month over a 12-month period) accounted for 6% of users overall. Men, nonwhite patients, Hispanic patients, Spanish-speaking patients, and those with the lowest incomes were significantly less likely to activate. Publicly insured and uninsured patients were also less likely to log in to their MyChart account, but once activated they were more likely than privately insured patients to use MyChart functions. CONCLUSIONS: Our findings suggest that, compared with others, certain patient groups may be less interested in using patient portals or may have experienced significant barriers that prevented use. Making portal access available is a first step. Additional studies need to specifically identify health system-, clinic-, and patient-level barriers and facilitators to portal adoption and use.

Childhood immunization registries: gaps between knowledge and action among family practice physicians and pediatricians in Washington state, 1998.

OBJECTIVES: To assess the availability and use of Washington State's CHILD (Children's Health, Immunization, Linkages, and Development) Profile and other computerized immunization tracking systems, to determine physicians' attitudes about these systems, and to identify factors associated with using them. DESIGN: Randomized, population-based, cross-sectional survey. PARTICIPANTS: Washington family physician and pediatrician specialty organization members providing childhood immunizations in 1998 (N = 2472). MAIN OUTCOME MEASURE: Reported CHILD Profile and other computerized systems use. RESULTS: The adjusted response rate was 75% (n = 1331). Overall, 37.7% of respondents had heard of CHILD Profile, 6.3% used it, and 24.9% used other systems. Groups significantly more likely not to use computerized systems than referent pediatricians in areas fully implementing CHILD Profile were family physicians (adjusted odds ratio [aOR], 2.4; 95% confidence interval [CI], 1.4-4.0), private physicians (aOR, 8.0; 95% CI, 3.2-20.1), physicians taking fewest opportunities to immunize (aOR, 2.3; 95% CI, 1.4-3.7), and physicians practicing in local health jurisdiction areas with CHILD Profile marketing activity (aOR, 2.1; 95% CI, 1.2-3.9) or in those areas with little or no registry activity (aOR, 2.6; 95% CI, 1.6-4.4). Those with systems agreed that they save time (71.0%), make status checks easier (87.1%), and increase immunization coverage (88.6%). Those without systems agreed that they help practices (90.3%) and increase efficiency (76.5%), but fewer agreed that they reduce costs (30.2%). CONCLUSIONS: Although most physicians agreed that computerized systems are useful, few had them or used them. Provider-based systems can improve immunization coverage, but the feasibility and effectiveness of communitywide and statewide systems remain unexplored. Because these systems depend on participation, more understanding is needed to help organizations implement them. Interventions to increase availability and use should address provider and health organization needs.

Risk factors associated with parents claiming personal-belief exemptions to school immunization requirements: community and other influences on more skeptical parents in Oregon, 2006.

BACKGROUND AND OBJECTIVES: With vaccine-preventable diseases at record lows, few studies investigate rising parent-claimed exemptions to school immunization requirements. After finding exemption clusters in Oregon, we hypothesized that exemption risk factors may vary among communities. We surveyed parents to identify risk factors for exemptions and evaluated risk factor differences among communities with differing exemption rates. DESIGN: Retrospective cohort study, multi-staged, population-proportionate sampling. SETTING AND PARTICIPANTS: Parents of 2004-05 Oregon elementary school children (N=2900). MAIN OUTCOME MEASURE: Parent-reported exemption status. RESULTS: The response rate was 55%. Compared to vaccinators, exemptors were significantly more likely to have: strong vaccine concerns (weighted adjusted odds ratio (aOR)=15.3, 95% CI 6.4-36.7); "vaccine-hesitant" concerns (aOR=2.3; 95% CI 1.0-5.0); >1 childbirth(s) at a non-hospital, alternative setting (aOR=3.6; 95% CI 1.6-8.0); distrust of local doctors (aOR=2.7; 95% CI 1.0-7.5); reported chiropractic healthcare for their youngest school-age child (aOR=3.9; 95% CI 1.8-8.5); and reported knowledge of someone with a vaccine-hurt child (aOR=1.8; 95% CI 0.9-3.4). Exemptors were less likely to have "pro-vaccine" beliefs (aOR=0.2; 95% CI 0.0-0.6) and less likely to report relying on print materials (aOR=0.4; 95% CI 0.2-0.8). The strengths of association differed significantly for those with strong vaccine concerns and those reporting knowledge of someone with a vaccine-hurt child, depending on residence in exemption-rate areas, e.g., exemptors in medium-rate areas were more likely to have strong vaccine concerns (aOR=13.5; 95% CI 5.4-34.0) than those in high-rate areas (aOR=9.7; 95% CI 3.7-25.4). CONCLUSIONS: Vaccine beliefs were important risk factors. That differing community-level exemption use modified the effects of several individual-level factors suggests that communities also influence parent decisions. Therefore, understanding community contexts and norms may be important when designing interventions.

To give or not to give: Approaches to early childhood immunization delivery in Oregon rural primary care practices.

CONTEXT: Little is known about rural clinicians' perspectives regarding early childhood immunization delivery, their adherence to recommended best immunization practices, or the specific barriers they confront. PURPOSE: To examine immunization practices, beliefs, and barriers among rural primary care clinicians for children in Oregon and compare those who deliver all recommended immunizations in their practices with those who do not. METHODS: A mailed questionnaire was sent to all physicians, nurse practitioners, and physician assistants practicing primary care in rural communities throughout Oregon. FINDINGS: While 39% of rural clinicians reported delivering all childhood immunizations in their clinic, 43% of clinicians reported that they refer patients elsewhere for some vaccinations, and 18% provided no immunizations in the clinic whatsoever. Leading reasons for referral include inadequate reimbursement, parental request, and storage and stocking difficulties. Nearly a third of respondents reported that they had some level of concern about the safety of immunizations, and 14% reported that concerns about safety were a specific reason for referring. Clinicians who delivered only some of the recommended immunizations were less likely than nonreferring clinicians to have adopted evidence-based best immunization practices. CONCLUSIONS: This study of rural clinicians in Oregon demonstrates the prevalence of barriers to primary care based immunization delivery in rural regions. While some barriers may be difficult to overcome, others may be amenable to educational outreach and support. Thus, efforts to improve population immunization rates should focus on promoting immunization "best practices" and enhancing the capacity of practices to provide immunizations and ensuring that any alternative means of delivering immunizations are effective.

The future of epidemiology.

In this article, the authors discuss current challenges and opportunities in epidemiology that will affect the field's future. Epidemiology is commonly considered the methodologic backbone for the fields of public health and outcomes research because its practitioners describe patterns of disease occurrence, identify risk factors and etiologic determinants, and demonstrate the usefulness of interventions. Like most aspects of science, epidemiology is in rapid flux. Several factors that are influencing and will continue to influence epidemiology and the health of the public include factors fundamental to framing the discipline of epidemiology (i.e., its means of communication, its methodologies, its access to data, its values, its population perspective), factors relating to scientific advances (e.g., genomics, comparative effectiveness in therapeutics), and factors shaping human health (e.g., increasing globalism, the environment, disease and lifestyle, demographics, infectious disease).

Orofacial cleft malformations: associations with maternal and infant characteristics in Washington State.

BACKGROUND: To characterize the prevalence of orofacial cleft malformations and investigate variations in prevalence according to maternal and infant characteristics, we analyzed a cohort of 298,138 live births delivered between 1987 and 1990 to residents of Washington State. METHODS: Infants with cleft defects were identified using a statewide, population-based birth defects registry. Information on infant and maternal characteristics was obtained from Washington State birth certificates. Multiple logistic regression analysis was used to measure the association between potential risk factors and orofacial clefts. Cleft lip with or without cleft palate (CL +/- CP) and cleft palate (CP) were analyzed separately, depending on the presence or absence of other defects. RESULTS: We identified 608 infants with cleft defects. The prevalences of isolated and non-isolated CL +/- CP were 0.87 and 0.30 per 1,000 live births, respectively. The prevalences of isolated and non-isolated CP were 0.34 and 0.54 per 1,000 live births, respectively. Compared with mothers aged 25-29 years, mothers aged < 20 years were twice as likely to have an infant with isolated CL +/- CP (RR = 2.0; 95% CI 1.3, 2.9). Compared to white mothers, black mothers were more likely to have an infant with non-isolated CL +/- CP (RR = 2.8; 95% CI 1.2, 6.6). CONCLUSIONS: The prevalences of orofacial clefts in Washington State in 1987-90 were similar to those of other states. This study is among the first to report a greater relative risk for isolated CL +/- CP among the infants of mothers < 20 years compared to older mothers.