Rachel L. Richesson, MS, PhD, MPH, FACMI

Rachel Richesson, MS, PhD, MPH, FACMI, a noted informaticist, joined the DUSON faculty in December 2011. Dr. Richesson earned her BS (Biology) at the University of Massachusetts in 1991, and holds graduate degrees in Community Health (MPH, 1995) and Health Informatics (MS, 2000 and PhD, 2003) from the University of Texas Health Sciences Center in Houston. Her dissertation involved the integration of heterogeneous data from multiple emergency departments. Dr. Richesson spent 7 years as at the University of South Florida College of Medicine directing strategy for the identification and implementation of data standards for a variety of multi-national multi-site clinical research and epidemiological studies housed within the USF Department of Pediatrics, including the NIH Rare Diseases Clinical Research Network (RDCRN) and The Environmental Determinants of Diabetes in the Young (TEDDY) study.


Dr. Richesson has conducted original research on the quality and usability of various terminological data standards, particularly in the context of clinical research, and has presented dozens of posters and invited talks on the topic of data standards in clinical research. She has fostered numerous interdisciplinary research collaborations and is nationally and internationally recognized for her extensive clinical informatics experiences. In 2012, she edited Clinical Research Informatics, the first textbook dedicated to this topic, and co-authored several chapters.


Dr. Richesson is particularly interested in new applications and technologies and standards specifications that will increase the efficiency of clinical research data collection and analysis, and that will enable interoperability between clinical research and health care systems. She co-leads the Phenotyping, Data Standards, and Data Quality Core for the NIH Health Care Systems Research Collaboratory, a demonstration program for the transformation of clinical trials based upon use of electronic health records (EHRs) and healthcare systems partnerships. In this role, she is developing standard approaches and guidance for the extraction of clinical data to support research and learning healthcare systems. She is also the co-lead of the Rare Diseases Task Force for the national distributed Patient Centered Outcomes Research Network (PCORnet), specifically promoting standardized EHR-based condition definitions (“computable phenotypes”) for rare diseases, and helping to develop a national research infrastructure that can support observational and interventional research for various types of conditions.


At DUSON, Dr. Richesson teaches Health Information Exchange Standards, Methods and Models (N410) and Health Information Systems (N409), supports informatics practica (N498), and co-teaches Data-Driven Health Care Improvements (N653). She also engages in informatics-focused initiatives across the Duke campus, particularly within the Duke Center for Health Informatics and Duke Clinical Research Institute programs. Dr. Richesson was elected as a fellow of the College of Medical Informatics 2014.

Academic Program Affiliations
  • Master of Science in Nursing Program
  • Doctor of Nursing Practice Program
Education
  • PhD - University of Texas School of Health Information Sciences
  • MS - University of Texas School of Health Information Sciences
  • MPH - University of Texas School of Public Health
  • BS - University of Massachusetts - Amherst
Awards and Honors
  • 2006 || Performance Award, Clinical Data Interchange Standards Consortium (CDISC), SDTM Terminology Package 1 and 2A Recommendations
  • 2002 || 1st Place Winner, Student Poster Contest, University of Texas School of Health Information Sciences
  • 1999 || Dean's Scholarship Award, University of Texas School of Health Information Sciences
Representative Publications
  • 2011 -- PubMed # : 21722563 -- Richesson, R. L. Data standards in diabetes patient registries. J Diabetes Sci Technol. May, 2011 5(3); 476-85. PMC3192614
  • 2011 -- PubMed # : 21486890 -- Richesson, R. L. and Nadkarni, P. Data standards for clinical research data collection forms: current status and challenges. J Am Med Inform Assoc. 18(3); 341-6. PMC3078665
  • 2010 -- PubMed # : 20703919 -- Richesson, R. L. and Smith, S. B. and Malloy, J. and Krischer, J. P. Achieving standardized medication data in clinical research studies: two approaches and applications for implementing RxNorm. J Med Syst. 34(4); 651-7.
  • 2010 -- PubMed # : 21347050 -- Pathak, J. and Richesson, R. L. Use of standard drug vocabularies in clinical research: a case study in pediatrics. AMIA Annu Symp Proc. November, 2010 2010 607-11. PMC3041282
  • 2009 -- PubMed # : 18804556 -- Richesson, R. L. and Lee, H. S. and Cuthbertson, D. and Lloyd, J. and Young, K. and Krischer, J. P. An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants. Contemp Clin Trials. January, 2009 30(1); 55-62. PMC2640948
  • 2008 -- PubMed # : 18328789 -- Andrews, J. E. and Patrick, T. B. and Richesson, R. L. and Brown, H. and Krischer, J. P. Comparing heterogeneous SNOMED CT coding of clinical research concepts by examining normalized expressions. J Biomed Inform. 41(6); 1062-9. PMC2605270
  • 2008 -- PubMed # : 18406213 -- Richesson, R. L. and Fung, K. W. and Krischer, J. P. Heterogeneous but "standard" coding systems for adverse events: Issues in achieving interoperability between apples and oranges. Contemp Clin Trials. 29(5); 635-45.
  • 2008 -- PubMed # : 18759506 -- Richesson, R. L. and Malloy, J. F. and Paulus, K. and Cuthbertson, D. and Krischer, J. P. An automated standardized system for managing adverse events in clinical research networks. Drug Saf. October, 2008 31(10); 807-22.
  • 2007 -- PubMed # : 17712081 -- Richesson, R. L. and Krischer, J. Data standards in clinical research: gaps, overlaps, challenges and future directions. J Am Med Inform Assoc. 14(6); 687-96. PMC2213488
  • 2007 -- PubMed # : 17460128 -- Andrews, J. E. and Richesson, R. L. and Krischer, J. Variation of SNOMED CT coding of clinical research concepts among coding experts. J Am Med Inform Assoc. 14(4); 497-506.
  • 2007 -- PubMed # : 18694191 -- Richesson, R. L. and Young, K. and Lloyd, J. and Adams, T. and Guillette, H. and Malloy, J. and Krischer, J. P. An automated communication system in a Contact Registry for persons with rare diseases: tools for retaining potential clinical research participants. AMIA Annu Symp Proc. November, 2007 31(10); 1094.
  • 2006 -- PubMed # : 16799121 -- Richesson, R. L. and Andrews, J. E. and Krischer, J. P. Use of SNOMED CT to represent clinical research data: a semantic characterization of data items on case report forms in vasculitis research. J Am Med Inform Assoc. 13(5); 536-46. PMC1561787
  • 1998 -- PubMed # : 9448454 -- Richesson, R. L. and Hwang, L. Y. Impact of the 1993 CDC surveillance definition of AIDS in Texas, 1991-1994. Tex Med. 94(1); 56-63.
  • 2012 -- Richesson, R. L. and Andrews, J. E. (Eds.) Clinical Research Informatics February, 2012 .
  • 2012 -- Richesson, R. L. and Andrews, J. E. Introduction to clinical informatics February, 2012 3-16.
  • 2012 -- van Grootheest, A. C. K. and Richesson, R. L. Pharmacovigilance February, 2012 367-388.
  • 2011 -- PubMed # : 21674518 -- Statland, J. M. and Wang, Y. and Richesson, R. and Bundy, B. and Herbelin, L. and Gomes, J. and Trivedi, J. and Venance, S. and Amato, A. and Hanna, M. and Griggs, R. and Barohn, R. J. and Cinch Consortium, An interactive voice response diary for patients with non-dystrophic myotonia. Muscle Nerve. 44(1); 30-5. PMC3233757
  • 2011 -- PubMed # : 21650145 -- Kallem, C. and Richesson, R. and DuLong, D. and Sison, L. and Van Dyke, P. and Mon, D. T. Advancing secondary data uses through data standards. J AHIMA. April, 2011 82(4); 38-9.
  • 2010 -- PubMed # : 20609392 -- Rubinstein, Y. R. and Groft, S. C. and Bartek, R. and Brown, K. and Christensen, R. A. and Collier, E. and Farber, A. and Farmer, J. and Ferguson, J. H. and Forrest, C. B. and Lockhart, N. C. and McCurdy, K. R. and Moore, H. and Pollen, G. B. and Richesson, R. and Miller, V. R. and Hull, S. and Vaught, J. Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials. 31(5); 394-404. PMC2930109
  • 2010 -- PubMed # : 20034594 -- Weng, C. and Tu, S. W. and Sim, I. and Richesson, R. Formal representation of eligibility criteria: a literature review. J Biomed Inform. 43(3); 451-67. PMC2878905
  • 2010 -- PubMed # : 21057650 -- Richesson, R. and Shereff, D. and Andrews, J. [RD] PRISM Library: Patient Registry Item Specifications and Metadata for Rare Diseases. J Libr Metadata. April-September, 2010 10(2-3); 119-135. PMC2967796
  • 2008 -- PubMed # : 17289429 -- Moyers, S. and Richesson, R. and Krischer, J. Trans-atlantic data harmonization in the classification of medicines and dietary supplements: a challenge for epidemiologic study and clinical research. Int J Med Inform. 77(1); 58-67. PMC2259273
  • 2008 -- PubMed # : 18998949 -- Patrick, T. B. and Richesson, R. and Andrews, J. E. and Folk, L. C. SNOMED CT coding variation and grouping for "other findings" in a longitudinal study on urea cycle disorders. AMIA Annu Symp Proc. November, 2008 43(3); 11-5.
  • 2006 -- PubMed # : 17238695 -- Richesson, R. and Young, K. and Guillette, H. and Tuttle, M. and Abbondondolo, M. and Krischer, J. Standard terminology on demand: facilitating distributed and real-time use of SNOMED CT during the clinical research process. AMIA Annu Symp Proc. November, 2006 1076. PMC1839627
  • 2000 -- PubMed # : 11063063 -- Markham, C. and Baumler, E. and Richesson, R. and Parcel, G. and Basen-Engquist, K. and Kok, G. and Wilkerson, D. Impact of HIV-positive speakers in a multicomponent, school-based HIV/STD prevention program for inner-city adolescents. AIDS Educ Prev. 12(5); 442-54.
  • 2004 -- Mirhaji, P. and Lillibridge, S. and Richesson, R. L. and Zhang, J. and Smith, J. Semantic approach to public health situation awareness - design and methodology. Morbidity and Mortality Weekly Report. 2004 53(Suppl.); 252.
  • 2003 -- Richesson, R. L. and Turley, J. P. Conceptual models: Definitions, construction, and applications in public health surveillance. Journal of Urban Health. 2003 80(Suppl. 1); i128.
  • 2012 -- Richesson, R. L. and Moldwin, R. and Andrews, J. E. and Shereff, D. E. The use of metadata and terminology standards to support for retrieval and re-use of question and answer sets for patient registries. International Journal of Functional Informatics and Personalised Medicine. December, 2012 .
  • 2012 -- PubMed # : 22405970 -- Richesson, R. L. and Sutphen, R. and Shereff, D. and Krischer, J. P. The Rare Diseases Clinical Research Network Contact Registry update: features and functionality. Contemp Clin Trials. July, 2012 33(4); 647-56. PMC3652679
  • 2011 -- PubMed # : 22195060 -- Barton, C. and Kallem, C. and Van Dyke, P. and Mon, D. and Richesson, R. Demonstrating "collect once, use many"--assimilating public health secondary data use requirements into an existing Domain Analysis Model. AMIA Annu Symp Proc. October, 2011 2011 98-107. PMC3243233
  • 2012 -- Richesson, R. L. and Vehik, K. Patient registries February, 2012 233-253.
  • 2010 -- PubMed # : 20824441 -- Richesson, R. and Vehik, K. Patient registries: utility, validity and inference. Adv Exp Med Biol. Summer, 2010 686 (Rare Diseases Epidemiology)(2-3); 87-104.
  • 2011 -- Richesson, R.L. and Kallen, C. and DuLong, D. and Sison, L. and Goossen, W. and Huang W. and Van Dyke, P. and Barton, C. and Mon, D.T. Common Data Elements for Clinical Documentation and Secondary Use: Diabe-DS Proof-of-Concept for “Collect Once, Use Many Times” (Project White Paper) November, 2011 .
  • 2010 -- Richesson, R. L. and Shereff, D. and Spisla, C. and Albarracin, N. and Konicek, D. and Andrews, J. E. The use of SNOMED CT to support retrieval and re-use of Question and Answer Sets for patient registries International Journal of Functional Informatics and Personalised Medicine. Fall, 2010 3(4); 342-365.
  • 2007 -- PubMed # : 17911793 -- Richesson, R. and Syed, A. and Guillette, H. and Tuttle, M. S. and Krischer, J. A web-based SNOMED CT browser: distributed and real-time use of SNOMED CT during the clinical research process. Stud Health Technol Inform. August, 2007 631-5.
  • 2012 -- PubMed # : 23611924 -- Richesson, R. L. and Shereff, D. and Andrews, J. E. Standardization of Questions in Rare Disease Registries: The PRISM Library Project. Interact J Med Res. October, 2012 1(2); e10. PMC3626121
  • 2013 -- PubMed # : 23956018 -- Richesson, R. L. and Hammond, W. E. and Nahm, M. and Wixted, D. and Simon, G. E. and Robinson, J. G. and Bauck, A. E. and Cifelli, D. and Smerek, M. M. and Dickerson, J. and Laws, R. L. and Madigan, R. A. and Rusincovitch, S. A. and Kluchar, C. and Califf, R. M. Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory. J Am Med Inform Assoc. December, 2013 20(e2); e226-31. PMC3861929
  • 2013 -- PubMed # : 24026307 -- Richesson, R. L. and Rusincovitch, S. A. and Wixted, D. and Batch, B. C. and Feinglos, M. N. and Miranda, M. L. and Hammond, W. E. and Califf, R. M. and Spratt, S. E. A comparison of phenotype definitions for diabetes mellitus. J Am Med Inform Assoc. December, 2013 20(e2); e319-26. PMC3861928
  • 2014 -- PubMed # : 24434192 -- Richesson, R. L. An informatics framework for the standardized collection and analysis of medication data in networked research. J Biomed Inform. December, 2014 52 4-10.
  • 2014 -- PubMed # : 24625507 -- Mooney, J. and Spalding, N. and Poland, F. and Grayson, P. and Leduc, R. and McAlear, C. A. and Richesson, R. L. and Shereff, D. and Merkel, P. A. and Watts, R. A. The informational needs of patients with ANCA-associated vasculitis-development of an informational needs questionnaire. Rheumatology (Oxford). August, 2014 53(8); 1414-21. PMC4103516
  • 2014 -- PubMed # : 25123746 -- Richesson, R. L. and Horvath, M. M. and Rusincovitch, S. A. Clinical research informatics and electronic health record data. Yearb Med Inform. August, 2014 9(1); 215-23. PMC4287078
  • 2014 -- PubMed # : 24634202 -- Grayson, P. C. and Amudala, N. A. and McAlear, C. A. and Leduc, R. L. and Shereff, D. and Richesson, R. and Fraenkel, L. and Merkel, P. A. Causal attributions about disease onset and relapse in patients with systemic vasculitis. J Rheumatol. 41(5); 923-30. PMC4008683
  • 2013 -- PubMed # : 23861259 -- Grayson, P. C. and Amudala, N. A. and Mcalear, C. A. and Leduc, R. L. and Shereff, D. and Richesson, R. and Fraenkel, L. and Merkel, P. A. Illness perceptions and fatigue in systemic vasculitis. Arthritis Care Res (Hoboken). 65(11); 1835-43. PMC3962511
  • 2015 -- PubMed # : 25981416 -- Richesson, R. L. and Chute, C. G. Health information technology data standards get down to business: maturation within domains and the emergence of interoperability. J Am Med Inform Assoc. May, 2015 22(3); 492-4.
  • 2014 -- PubMed # : 25717397 -- Blach, C. and Del Fiol, G. and Dundee, C. and Frund, J. and Richesson, R. and Smerek, M. and Walden, A. and Tenenbaum, J. D. Use of RxNorm and NDF-RT to normalize and characterize participant-reported medications in an i2b2-based research repository. AMIA Jt Summits Transl Sci Proc. April, 2014 2014 35-40. PMC4333688
  • 2014 -- PubMed # : 25954361 -- Fung, K. W. and Richesson, R. and Bodenreider, O. Coverage of rare disease names in standard terminologies and implications for patients, providers, and research. AMIA Annu Symp Proc. November, 2014 2014 564-72. PMC4419993
Grant Funding (Selected)
  • A Library of Standardized Patient Registry Questions for Rare Diseases
    National Library of Medicine
    1 RC1LM010455-01
    10/2009 to 09/2011
  • Rare Diseases Data and Technology Coordinating Center
    NINDS, National Institutes of Health
    U54 RR019259-02
    09/2009 to 08/2014
    Role: Co-investigator
  • Infrastructure to Support the Patient Reported Outcomes Measurement Information System (PROMIS) project
    American Institutes for Research
    12/2010 to 01/2011
  • Rare Diseases Clinical Research Network Reproductive Health in Men and Women with Vasculitis
    Vasculitis Foundation
    07/2010 to 07/2011
    Role: co-PI
  • Rare Diseases Data and Technology Coordinating Center
    National Center for Research Resources (NCRR), National Institutes of Health
    7U54RR019259-02
    09/2003 to 07/2008
    Role: Co-investigator
  • Knowledge Mapping Across Disparate Patient Care Datasets
    National Library of Medicine (NLM), National Institutes of Health
    5F38LM07187-02
    02/2002 to 01/2004
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