The Managing Epilepsy Well (MEW) network database: Lessons learned in refining and implementing an integrated data tool in service of a national U.S. Research Collaborative

Highlights

• This report describes an integrated dataset on epilepsy self-management research.

• The Managing Epilepsy Well Network database (MEW DB) uses multi-tiered organization.

• Pooled data from multiple studies provide a diverse sample of people with epilepsy.

Abstract

Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with seizures and optimize health. This report describes the implementation and evolution of the Managing Epilepsy Well Network Database (MEW DB), an integrated data resource intended to advance knowledge on ESM. The MEW DB utilizes a three-tiered (Tier 1–3) system of data organization, with tiers of data generally increasing in ascending complexity or collection burden. A MEW DB Steering Committee (SC) establishes consensus on planned analyses using a standardized new analysis request template. The data management structure facilitates harmonization and integration of additional data, or to update the database as new data become available. The current MEW DB comprises 1,563 people with epilepsy. Mean age was 39.9 years, 64.9% women (N = 1006), 12.8% African American (N = 170), 22.2% Hispanic (N = 306). On average, individuals have lived with epilepsy since their early 20s and are prescribed between 1 and 2 antiepileptic drugs. The MEW DB spans multiple socio-ecological levels to provide a robust multi-tiered framework for studying ESM. A total of 41 common data elements have been identified through iterative consensus. This integrated database takes advantage of an extensive collective background of archival evidence in ESM and brings together engaged investigators to build a dataset that represents diverse types of individuals with epilepsy, targets health domains important to ESM, and facilitates analyses that would not be possible with sites operating independently. Overall, the MEW DB serves the greater mission of this research collaborative and has potential to advance ESM research.

Introduction

Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with their epilepsy and optimize their overall health [1], [2], [3], [4], [5], [6], [7]. While the literature on ESM is growing, there remains a significant paucity of information on this topic including best ways to assess outcome domains that are relevant to ESM, differential patterns of self-management competency among diverse populations with epilepsy, and long-term effects of ESM training on health outcomes in people with epilepsy [8]. Many ESM studies are limited by modest sample sizes, single-site settings, and lack of sample diversity [8].

In 2007, the U.S. Centers for Disease Control and Prevention (CDC) initiated the Prevention Research Centers’ Managing Epilepsy Well (MEW) Network to develop, test, and disseminate evidence-based ESM interventions [3], [9]. The MEW Network sites conduct research on ESM in collaboration with network and community stakeholders and broadly disseminate the findings. To help overcome some of the methodological limitations that restrict generalizability of existing ESM research, a critical element of the MEW Network research collaborative has been the development and maintenance of the Managing Epilepsy Well Integrated Database (MEW DB), a pooled repository of archival and on-going cross-sectional and longitudinal clinical research studies conducted by academic sites participating the MEW Network [9]. The premise of this integrated dataset is that it enables MEW network researchers to aggregate, query, and analyze large amounts of (often complementary) data, and conduct analyses that would not be possible or practical using individual, smaller sample studies.

As a pragmatic strategy, a core workgroup composed of representatives from participating MEW research sites used a two-pronged approach to establish and initially implement the MEW DB. The workgroup initiated an interactive forum (group teleconference calls every 1–3 months) for presenting summary findings and soliciting MEW network member input on a longerterm vision for: (1) How the dataset could serve the different needs of the network, (2) identification of key common data elements that would minimize the need for harmonization or cross-walking across sites, and (3) consensus on an incremental implementation plan that would serve the evolving needs of this national research collaborative. This initial effort, described elsewhere in greater detail [10], facilitated a body of information that provided insight into the types of individuals with epilepsy who participated in ESM research, comorbidity correlates of ESM, ESM competence across diverse samples, and aggregate outcomes of ESM [10], [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22].

As the MEW Network continues to mature and evolve, there has been progressive refinement of the MEW DB. This report describes the implementation and incremental evolution of an integrated dataset intended to advance knowledge on ESM and inform the next wave of ESM research being conducted by this U.S. research collaborative. Recommendations and “lessons learned” may help other researchers interested in developing similar research registries.