Literature DB >> 31259015

Implementation of Informatics to Support the NIH All of Us Research Program in a Healthcare Provider Organization.

Scott P Turner1, Sean T Pompea1, Kelly L Williams2, David A Kraemer1, Evan T Sholle1, Cindy Chen1, Curtis L Cole1,3, Rainu Kaushal2, Thomas R Campion1,2,4.   

Abstract

The NIH All of Us Research Program, a national effort to collect biospecimens and health data for over one million participants from across the United States, requires participating healthcare provider organizations (HPOs) to use informatics tools maintained by the NIH to manage participant consent, biospecimen processing, physical measurements, and other workflows. HPOs also maintain distinct workflows for handling overlapping tasks within their individual aegis, which do not necessarily achieve seamless interoperability with NIH-maintained cloud-based systems. At our HPO, we implemented informatics to address gaps in enrollment workflows and hardware, clinical workflow integration, patient engagement, laboratory support, and study team reporting. In this case report we detail our approach to inform efforts at other institutions for the NIH All of Us Research Program and other studies.

Entities:  

Year:  2019        PMID: 31259015      PMCID: PMC6568061     

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


  4 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.  Secondary Use of Patients' Electronic Records (SUPER): An Approach for Meeting Specific Data Needs of Clinical and Translational Researchers.

Authors:  Evan T Sholle; Joseph Kabariti; Stephen B Johnson; John P Leonard; Jyotishman Pathak; Vinay I Varughese; Curtis L Cole; Thomas R Campion
Journal:  AMIA Annu Symp Proc       Date:  2018-04-16

3.  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

4.  Generalizable Middleware to Support Use of REDCap Dynamic Data Pull for Integrating Clinical and Research Data.

Authors:  Thomas R Campion; Evan T Sholle; Marcos A Davila
Journal:  AMIA Jt Summits Transl Sci Proc       Date:  2017-07-26
  4 in total
  3 in total

1.  Children's rare disease cohorts: an integrative research and clinical genomics initiative.

Authors:  Shira Rockowitz; Nicholas LeCompte; Mary Carmack; Andrew Quitadamo; Lily Wang; Meredith Park; Devon Knight; Emma Sexton; Lacey Smith; Beth Sheidley; Michael Field; Ingrid A Holm; Catherine A Brownstein; Pankaj B Agrawal; Susan Kornetsky; Annapurna Poduri; Scott B Snapper; Alan H Beggs; Timothy W Yu; David A Williams; Piotr Sliz
Journal:  NPJ Genom Med       Date:  2020-07-06       Impact factor: 8.617

2.  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

3.  Children's rare disease cohorts: an integrative research and clinical genomics initiative.

Authors:  Shira Rockowitz; Nicholas LeCompte; Mary Carmack; Andrew Quitadamo; Lily Wang; Meredith Park; Devon Knight; Emma Sexton; Lacey Smith; Beth Sheidley; Michael Field; Ingrid A Holm; Catherine A Brownstein; Pankaj B Agrawal; Susan Kornetsky; Annapurna Poduri; Scott B Snapper; Alan H Beggs; Timothy W Yu; David A Williams; Piotr Sliz
Journal:  NPJ Genom Med       Date:  2020-07-06       Impact factor: 8.617

  3 in total

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