Abstract

BackgroundPatient-powered research networks (PPRNs) have been employing and exploring different methods to engage patients in research activities specific to their conditions. One way to intensify patient engagement is to partner with payer stakeholders. The objective of this study was to evaluate the effectiveness of two common payer-initiated outreach methods (postal mail versus email) for inviting prospective candidates to participate in their initiatives.MethodsThis descriptive study linked members of a nationally-representative private insurance network to four disease-specific PPRN registries. Eligible members meeting diagnostic criteria who were not registered in any of the four PPRNs by 02/28/2018 were identified, and randomly assigned to either the mail or email group. They were contacted in two outreach efforts: first on 04/23/2018, and one follow-up on 05/23/2018. New registration rates by outreach method as of 8/31/2018 were determined by relinking. We compared registrants and non-registrants using bivariate analysis.ResultsA total of 14,571 patients were assigned to the mail group, and 14,574 to the email group. Invitations were successfully delivered to 13,834 (94.9%) mail group and 10,205 (70.0%) email group members. A small but significantly larger proportion of mail group members, (n = 78; 0.54, 95% Confidence Interval [CI] {0.42–0.67%}) registered in PPRNs relative to the email group (n = 24; 0.16, 95% CI {0.11–0.25%}), p < 0.001. Members who registered had more comorbidities, were more likely to be female, and had marginally greater medical utilization, especially emergency room visits, relative to non-registrants (52.0% vs. 42.5%, p = 0.05).ConclusionA health plan outreach to invite members to participate in PPRNs was modestly effective. Regular mail outperformed less costly email. Providing more value-add to participants may be a possible way to increase recruitment success.

Highlights

  • Patient-powered research networks (PPRNs) have been employing and exploring different methods to engage patients in research activities specific to their conditions

  • Study design and data sources In this descriptive study, health plan enrollee data were queried from the HealthCore Integrated Research Environment (HIRE®) to identify members who met computable phenotypes between Jan 1, 2006 and February 28, 2018 but who were not already registered in any of the four disease-specific PPRNs of interest: ArthritisPower, ABOUT (American BRCA Outcomes and Utilization of Testing), iConquerMS (Multiple Sclerosis PatientPowered Research Network) or the VPPRN (Vasculitis Patient-Powered Research Network)

  • The HIRE is a repository of consistently updated longitudinal patient-level administrative claims data for approximately 60 million commercially insured health plan enrollees, with million members currently enrolled at the time of the study outreach, from major regional health plans across the continental United States [7]

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Summary

Introduction

Patient-powered research networks (PPRNs) have been employing and exploring different methods to engage patients in research activities specific to their conditions. Since Patient-Centered Outcomes Research Institute (PCORI) established the Patient-Centered Research Network (PCORnet) [1,2,3], the 20 Patient-Powered Research Networks (PPRNs), 13 Clinical Data Research Networks (CDRNs), and 2 Health Plan Research Networks (HPRNs) [1,2,3] have actively engaged in harnessing data from multiple sources for more effective, efficient, and patient-centered research [1,2,3]. PPRNs make language and literacy appropriate recruitment and educational materials in various forms (including print, electronic, audio, and video streaming services) to reach historically underrepresented patient groups in terms of race/ethnicity, socioeconomic status, geographic location, health literacy, and clinical severity [2]

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