Literature DB >> 31259020

A Method for Integrating Healthcare Provider Organization and Research Sponsor Systems and Workflows to Support Large-Scale Studies.

Thomas R Campion1,2,3, Sean T Pompea1, Scott P Turner1, Evan T Sholle1, Curtis L Cole1,4, Rainu Kaushal2.   

Abstract

Healthcare provider organizations (HPOs) increasingly participate in large-scale research efforts sponsored by external organizations that require use of consent management systems that may not integrate seamlessly with local workflows. The resulting inefficiency can hinder the ability of HPOs to participate in studies. To overcome this challenge, we developed a method using REDCap, a widely adopted electronic data capture system, and novel middleware that can potentially generalize to other settings. In this paper, we describe the method, illustrate its use to support the NIHAll of Us Research Program and PCORI ADAPTABLE studies at our HPO, and encourage other HPOs to test replicability of the method to facilitate similar research efforts. Code is available on GitHub at https://github.com/wcmc-research-informatics/.

Year:  2019        PMID: 31259020      PMCID: PMC6568055     

Source DB:  PubMed          Journal:  AMIA Jt Summits Transl Sci Proc


  19 in total

1.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

2.  Development of a large-scale de-identified DNA biobank to enable personalized medicine.

Authors:  D M Roden; J M Pulley; M A Basford; G R Bernard; E W Clayton; J R Balser; D R Masys
Journal:  Clin Pharmacol Ther       Date:  2008-05-21       Impact factor: 6.875

3.  Evaluation of record linkage between a large healthcare provider and the Utah Population Database.

Authors:  Scott L DuVall; Alison M Fraser; Kerry Rowe; Alun Thomas; Geraldine P Mineau
Journal:  J Am Med Inform Assoc       Date:  2011-09-16       Impact factor: 4.497

4.  A new initiative on precision medicine.

Authors:  Francis S Collins; Harold Varmus
Journal:  N Engl J Med       Date:  2015-01-30       Impact factor: 91.245

5.  Implementation of the Department of Veterans Affairs' first point-of-care clinical trial.

Authors:  Leonard D'Avolio; Ryan Ferguson; Sergey Goryachev; Patricia Woods; Thomas Sabin; Joseph O'Neil; Chester Conrad; Joseph Gillon; Jasmine Escalera; Mary Brophy; Phillip Lavori; Louis Fiore
Journal:  J Am Med Inform Assoc       Date:  2012-02-24       Impact factor: 4.497

6.  Design and implementation of a privacy preserving electronic health record linkage tool in Chicago.

Authors:  Abel N Kho; John P Cashy; Kathryn L Jackson; Adam R Pah; Satyender Goel; Jörn Boehnke; John Eric Humphries; Scott Duke Kominers; Bala N Hota; Shannon A Sims; Bradley A Malin; Dustin D French; Theresa L Walunas; David O Meltzer; Erin O Kaleba; Roderick C Jones; William L Galanter
Journal:  J Am Med Inform Assoc       Date:  2015-06-23       Impact factor: 4.497

7.  China Kadoorie Biobank of 0.5 million people: survey methods, baseline characteristics and long-term follow-up.

Authors:  Zhengming Chen; Junshi Chen; Rory Collins; Yu Guo; Richard Peto; Fan Wu; Liming Li
Journal:  Int J Epidemiol       Date:  2011-09-21       Impact factor: 7.196

8.  UK biobank: an open access resource for identifying the causes of a wide range of complex diseases of middle and old age.

Authors:  Cathie Sudlow; John Gallacher; Naomi Allen; Valerie Beral; Paul Burton; John Danesh; Paul Downey; Paul Elliott; Jane Green; Martin Landray; Bette Liu; Paul Matthews; Giok Ong; Jill Pell; Alan Silman; Alan Young; Tim Sprosen; Tim Peakman; Rory Collins
Journal:  PLoS Med       Date:  2015-03-31       Impact factor: 11.069

Review 9.  Linking a population biobank with national health registries-the estonian experience.

Authors:  Liis Leitsalu; Helene Alavere; Mari-Liis Tammesoo; Erkki Leego; Andres Metspalu
Journal:  J Pers Med       Date:  2015-04-16

10.  Implementing a Clinical Research Management System: One Institution's Successful Approach Following Previous Failures.

Authors:  Thomas R Campion; Vanessa L Blau; Scott W Brown; Daniel Izcovich; Curtis L Cole
Journal:  AMIA Jt Summits Transl Sci Proc       Date:  2014-04-07
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  2 in total

1.  An architecture for research computing in health to support clinical and translational investigators with electronic patient data.

Authors:  Thomas R Campion; Evan T Sholle; Jyotishman Pathak; Stephen B Johnson; John P Leonard; Curtis L Cole
Journal:  J Am Med Inform Assoc       Date:  2022-03-15       Impact factor: 4.497

2.  Electronic Data Capture System (REDCap) for Health Care Research and Training in a Resource-Constrained Environment: Technology Adoption Case Study.

Authors:  Irma Adele Maré; Beverley Kramer; Scott Hazelhurst; Mapule Dorcus Nhlapho; Roy Zent; Paul A Harris; Michael Klipin
Journal:  JMIR Med Inform       Date:  2022-08-30
  2 in total

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