Brief Bio

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

Education

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

Areas of Expertise

• Informatics

Representative Publications

• 2015 -- Pubmed # 25981416 Richesson, R. L., 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 # 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 # 25954361 Fung, K. W., Richesson, R., 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 PMCID: PMC4419993

• 2014 -- Pubmed # 24625507 Mooney, J., Spalding, N., Poland, F., Grayson, P., Leduc, R., McAlear, C. A., Richesson, R. L., Shereff, D., Merkel, P. A., 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 PMCID: PMC4103516

• 2014 -- Pubmed # 25123746 Richesson, R. L., Horvath, M. M., Rusincovitch, S. A. Clinical research informatics and electronic health record data. Yearb Med Inform. August, 2014; 9(1); 215-23 PMCID: PMC4287078

• 2014 -- Pubmed # 24634202 Grayson, P. C., Amudala, N. A., McAlear, C. A., Leduc, R. L., Shereff, D., Richesson, R., Fraenkel, L., Merkel, P. A. Causal attributions about disease onset and relapse in patients with systemic vasculitis. J Rheumatol. May 1, 2014; 41(5); 923-30 PMCID: PMC4008683

• 2014 -- Pubmed # 25717397 Blach, C., Del Fiol, G., Dundee, C., Frund, J., Richesson, R., Smerek, M., Walden, A., 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 PMCID: PMC4333688

• 2013 -- Pubmed # 23956018 Richesson, R. L., Hammond, W. E., Nahm, M., Wixted, D., Simon, G. E., Robinson, J. G., Bauck, A. E., Cifelli, D., Smerek, M. M., Dickerson, J., Laws, R. L., Madigan, R. A., Rusincovitch, S. A., Kluchar, C., 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 PMCID: PMC3861929

• 2013 -- Pubmed # 24026307 Richesson, R. L., Rusincovitch, S. A., Wixted, D., Batch, B. C., Feinglos, M. N., Miranda, M. L., Hammond, W. E., Califf, R. M., Spratt, S. E. A comparison of phenotype definitions for diabetes mellitus. J Am Med Inform Assoc. December, 2013; 20(e2); e319-26 PMCID: PMC3861928

• 2013 -- Pubmed # 23861259 Grayson, P. C., Amudala, N. A., Mcalear, C. A., Leduc, R. L., Shereff, D., Richesson, R., Fraenkel, L., Merkel, P. A. Illness perceptions and fatigue in systemic vasculitis. Arthritis Care Res (Hoboken). November 1, 2013; 65(11); 1835-43 PMCID: PMC3962511

• 2012 -- Richesson, R. L., Moldwin, R., Andrews, J. E., 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 -- Richesson, R. L., Andrews, J. E. (Eds.) Clinical Research Informatics February, 2012; London: Springer.

• 2012 -- Richesson, R. L., Andrews, J. E. Introduction to clinical informatics In Clinical Research Informatics (1st ed.), edited by Richesson, R. L. & Andrews, J. E. February, 2012; pp. 3-16. London: Springer.

• 2012 -- van Grootheest, A. C. K., Richesson, R. L. Pharmacovigilance In Clinical Research Informatics (1st ed.), edited by Richesson, R. L. & Andrews, J. E. February, 2012; pp. 367-388. London: Springer.

• 2012 -- Richesson, R. L., Vehik, K. Patient registries In Clinical Research Informatics (1st ed.), edited by Richesson, R. L. & Andrews, J. E. February, 2012; pp. 233-253. London: Springer.

• 2012 -- Pubmed # 23611924 Richesson, R. L., Shereff, D., Andrews, J. E. Standardization of Questions in Rare Disease Registries: The PRISM Library Project. Interact J Med Res. October, 2012; 1(2); e10 PMCID: PMC3626121

• 2012 -- Pubmed # 22405970 Richesson, R. L., Sutphen, R., Shereff, D., Krischer, J. P. The Rare Diseases Clinical Research Network Contact Registry update: features and functionality. Contemp Clin Trials. July, 2012; 33(4); 647-56 PMCID: PMC3652679

• 2011 -- Richesson, R.L., Kallen, C., DuLong, D., Sison, L., Goossen, W., Huang W., Van Dyke, P., Barton, C., 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;

• 2011 -- Pubmed # 22195060 Barton, C., Kallem, C., Van Dyke, P., Mon, D., 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 PMCID: PMC3243233

• 2011 -- Pubmed # 21674518 Statland, J. M., Wang, Y., Richesson, R., Bundy, B., Herbelin, L., Gomes, J., Trivedi, J., Venance, S., Amato, A., Hanna, M., Griggs, R., Barohn, R. J., Cinch Consortium, An interactive voice response diary for patients with non-dystrophic myotonia. Muscle Nerve. July 1, 2011; 44(1); 30-5 PMCID: PMC3233757

• 2011 -- Pubmed # 21722563 Richesson, R. L. Data standards in diabetes patient registries. J Diabetes Sci Technol. May, 2011; 5(3); 476-85 PMCID: PMC3192614

• 2011 -- Pubmed # 21486890 Richesson, R. L., Nadkarni, P. Data standards for clinical research data collection forms: current status and challenges. J Am Med Inform Assoc. May 1, 2011; 18(3); 341-6 PMCID: PMC3078665

• 2011 -- Pubmed # 21650145 Kallem, C., Richesson, R., DuLong, D., Sison, L., Van Dyke, P., Mon, D. T. Advancing secondary data uses through data standards. J AHIMA. April, 2011; 82(4); 38-9

• 2010 -- Pubmed # 21347050 Pathak, J., 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 PMCID: PMC3041282

• 2010 -- Richesson, R. L., Shereff, D., Spisla, C., Albarracin, N., Konicek, D., 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

• 2010 -- Pubmed # 20609392 Rubinstein, Y. R., Groft, S. C., Bartek, R., Brown, K., Christensen, R. A., Collier, E., Farber, A., Farmer, J., Ferguson, J. H., Forrest, C. B., Lockhart, N. C., McCurdy, K. R., Moore, H., Pollen, G. B., Richesson, R., Miller, V. R., Hull, S., Vaught, J. Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials. September 1, 2010; 31(5); 394-404 PMCID: PMC2930109

• 2010 -- Pubmed # 20703919 Richesson, R. L., Smith, S. B., Malloy, J., Krischer, J. P. Achieving standardized medication data in clinical research studies: two approaches and applications for implementing RxNorm. J Med Syst. August 1, 2010; 34(4); 651-7

• 2010 -- Pubmed # 20824441 Richesson, R., Vehik, K. Patient registries: utility, validity and inference. Adv Exp Med Biol. Summer, 2010; 686 (Rare Diseases Epidemiology)(2-3); 87-104

• 2010 -- Pubmed # 20034594 Weng, C., Tu, S. W., Sim, I., Richesson, R. Formal representation of eligibility criteria: a literature review. J Biomed Inform. June 1, 2010; 43(3); 451-67 PMCID: PMC2878905

• 2010 -- Pubmed # 21057650 Richesson, R., Shereff, D., 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 PMCID: PMC2967796

• 2009 -- Pubmed # 18804556 Richesson, R. L., Lee, H. S., Cuthbertson, D., Lloyd, J., Young, K., 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 PMCID: PMC2640948

• 2008 -- Pubmed # 18328789 Andrews, J. E., Patrick, T. B., Richesson, R. L., Brown, H., Krischer, J. P. Comparing heterogeneous SNOMED CT coding of clinical research concepts by examining normalized expressions. J Biomed Inform. December 1, 2008; 41(6); 1062-9 PMCID: PMC2605270

• 2008 -- Pubmed # 18998949 Patrick, T. B., Richesson, R., Andrews, J. E., 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

• 2008 -- Pubmed # 18759506 Richesson, R. L., Malloy, J. F., Paulus, K., Cuthbertson, D., Krischer, J. P. An automated standardized system for managing adverse events in clinical research networks. Drug Saf. October, 2008; 31(10); 807-22

• 2008 -- Pubmed # 18406213 Richesson, R. L., Fung, K. W., Krischer, J. P. Heterogeneous but "standard" coding systems for adverse events: Issues in achieving interoperability between apples and oranges. Contemp Clin Trials. September 1, 2008; 29(5); 635-45

• 2008 -- Pubmed # 17289429 Moyers, S., Richesson, R., 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. January 1, 2008; 77(1); 58-67 PMCID: PMC2259273

• 2007 -- Pubmed # 18694191 Richesson, R. L., Young, K., Lloyd, J., Adams, T., Guillette, H., Malloy, J., 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

• 2007 -- Pubmed # 17712081 Richesson, R. L., Krischer, J. Data standards in clinical research: gaps, overlaps, challenges and future directions. J Am Med Inform Assoc. August 21, 2007; 14(6); 687-96 PMCID: PMC2213488

• 2007 -- Richesson, R., Syed, A., Guillette, H., Tuttle, M. S., Krischer, J. A web-based SNOMED CT browser: distributed and real-time use of SNOMED CT during the clinical research process. In , edited by Kuhn, K. A., Warren, J. R., Leong, T-Y. August, 2007; pp. 631-5. : .

• 2007 -- Pubmed # 17460128 Andrews, J. E., Richesson, R. L., Krischer, J. Variation of SNOMED CT coding of clinical research concepts among coding experts. J Am Med Inform Assoc. April 25, 2007; 14(4); 497-506

• 2006 -- Pubmed # 17238695 Richesson, R., Young, K., Guillette, H., Tuttle, M., Abbondondolo, M., 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 PMCID: PMC1839627

• 2006 -- Pubmed # 16799121 Richesson, R. L., Andrews, J. E., 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. June 23, 2006; 13(5); 536-46 PMCID: PMC1561787

• 2004 -- Mirhaji, P., Lillibridge, S., Richesson, R. L., Zhang, J., 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., Turley, J. P. Conceptual models: Definitions, construction, and applications in public health surveillance. Journal of Urban Health. 2003; 80(Suppl. 1); i128

• 2000 -- Pubmed # 11063063 Markham, C., Baumler, E., Richesson, R., Parcel, G., Basen-Engquist, K., Kok, G., Wilkerson, D. Impact of HIV-positive speakers in a multicomponent, school-based HIV/STD prevention program for inner-city adolescents. AIDS Educ Prev. October 1, 2000; 12(5); 442-54

• 1998 -- Pubmed # 9448454 Richesson, R. L., Hwang, L. Y. Impact of the 1993 CDC surveillance definition of AIDS in Texas, 1991-1994. Tex Med. January 1, 1998; 94(1); 56-63

Grant Funding (selected)

• A Library of Standardized Patient Registry Questions for Rare Diseases  
  National Library of Medicine
  1 RC1LM010455-01
  10/2009-09/2011
  

• Rare Diseases Data and Technology Coordinating Center  
  NINDS, National Institutes of Health
  U54 RR019259-02
  09/2009-08/2014
  Role: Co-investigator
  

• Infrastructure to Support the Patient Reported Outcomes Measurement Information System (PROMIS) project  
  American Institutes for Research
  12/2010-01/2011
  

• Rare Diseases Clinical Research Network Reproductive Health in Men and Women with Vasculitis  
  Vasculitis Foundation
  07/2010-07/2011
  Role: co-PI
  

• Rare Diseases Data and Technology Coordinating Center  
  National Center for Research Resources (NCRR), National Institutes of Health
  7U54RR019259-02
  09/2003-07/2008
  Role: Co-investigator
  

• Knowledge Mapping Across Disparate Patient Care Datasets  
  National Library of Medicine (NLM), National Institutes of Health
  5F38LM07187-02
  02/2002-01/2004