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Currently accepted at: JMIR Research Protocols

Date Submitted: May 27, 2018
Open Peer Review Period: Jun 8, 2018 - Jul 13, 2018
Date Accepted: Nov 25, 2018
(closed for review but you can still tweet)

This paper has been accepted and is currently in production.

It will appear shortly on 10.2196/11148

The final accepted version (not copyedited yet) is in this tab.

The final, peer-reviewed published version of this preprint can be found here:

Patient Engagement and Attitudes toward Using the Electronic Medical Record for Medical Research: The 2015 Greater Plains Collaborative Health and Medical Research Family Survey

Davis A, Hanrahan L, Bokov A, Schlachter S, Laroche H, Waitman LR

Patient Engagement and Attitudes toward Using the Electronic Medical Record for Medical Research: The 2015 Greater Plains Collaborative Health and Medical Research Family Survey

JMIR Res Protoc 2019;8(3):e11148

DOI: 10.2196/11148

PMID: 30860485

PMCID: 6434393

Patient Engagement and Attitudes toward Using the Electronic Medical Record for Medical Research: The 2015 Greater Plains Collaborative Health and Medical Research Family Survey

  • Ann M Davis; 
  • Lawrence P Hanrahan; 
  • Alex F Bokov; 
  • Sarah Schlachter; 
  • Helena H Laroche; 
  • Lemuel Russell Waitman; 
  • GPC Height Weight Research Team

ABSTRACT

Background:

Electronic Health Records (EHRs) are ubiquitous and yet little is known about their use for prospective research purposes, and even less is known about patient perspectives regarding the use of the EHR for research.

Objective:

The aim of this paper is to report on the initial obesity project from the Greater Plains Collaborative (GPC) that is part of the Patient Centered Outcomes Research Institute (PCORI) National Patient Centered Clinical Research Network (PCORNet). The purpose of the project was to prospectively assess caregivers’ willingness for their children to participate in medical research, and to assess their views regarding the use of the electronic health record for recruitment and data collection.

Methods:

The electronic health records (EHRs) of 10 Midwestern academic medical centers were used to select patients for a survey was designed to assess patient willingness to participate in research, as well as the use of their EHRs for research. Survey questions included questions regarding interest in medical research, as well as basic demographic and health information. A variety of contact methods were used.

Results:

A cohort of 54,269 patients was created and 3,139 (5.78%) responded. Completers were more likely to be female and Caucasian, although these and other factors differed significantly by site. Respondents were overwhelmingly positive about using EHRs for research.

Conclusions:

EHRs are an important resource for engaging patients in research, and our respondents concurred. However, this investigation had a very low response rate which varied by method of contact, geographic location, and respondent characteristics. But unlike other health studies, EHRs directed research can know with certainty the clinically observed characteristics of non-respondents and respondents. Thus reliable study estimates can be derived by weighting responses and over sampling difficult to reach subpopulations. These data suggest that EHRs are a promising new and effective tool for patient engaged health research. Clinical Trial: PCORI HSRP20143467


 Citation

Please cite as:

Davis A, Hanrahan L, Bokov A, Schlachter S, Laroche H, Waitman LR

Patient Engagement and Attitudes toward Using the Electronic Medical Record for Medical Research: The 2015 Greater Plains Collaborative Health and Medical Research Family Survey

JMIR Research Protocols. (forthcoming/in press)

DOI: 10.2196/11148

URL: https://preprints.jmir.org/preprint/11148

PMID: 30860485

PMCID: 6434393

Per the author's request the PDF is not available.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.