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.

Innovative methods for parents and clinics to create tools for kids' care (IMPACCT Kids' Care) study protocol.

BACKGROUND: Despite expansions in public health insurance, many children remain uninsured or experience gaps in coverage. Community health centers (CHCs) provide primary care to many children at risk for uninsurance and are well-positioned to help families obtain and retain children's coverage. Recent advances in health information technology (HIT) capabilities provide the means to create tools that could enhance CHCs' insurance outreach efforts. OBJECTIVE: To present the study design, baseline patient characteristics, variables, and statistical methods for the Innovative Methods for Parents And Clinics to Create Tools for Kids' Care (IMPACCT Kids' Care) study. METHODS/DESIGN: In this mixed methods study, we will design, test and refine health insurance outreach HIT tools through a user-centered process. We will then implement the tools in four CHCs and evaluate their effectiveness and barriers and facilitators to their implementation. To measure effectiveness, we will quantitatively assess health insurance coverage continuity and utilization of healthcare services for pediatric patients in intervention CHCs compared to matched control sites using electronic health record (EHR) and Oregon Medicaid administrative data over 18months pre- and 18months post-implementation (n=34,867 children). We will also qualitatively assess the implementation process to understand how the tools fit into the clinics' workflows and the CHC staff experiences with the tools. CONCLUSIONS: This study creates, implements, and evaluates health insurance outreach HIT tools. The use of such tools will likely improve care delivery and health outcomes, reduce healthcare disparities for vulnerable populations, and enhance overall healthcare system performance. ClinicalTrials.gov Identifier: NCT02298361.