Bibliography

2008
  1. Zeng-Treitler Q, Goryachev S, Tse T, Keselman A, Boxwala A. Estimating consumer familiarity with health terminology: a context-based approach.  J AM Med Inform Assoc. 2008; May-June; 15(3):349-56. [download pdf]

  2. Keselman A, Smith CA, Divita G, Kim H, Browne AC, Leroy, G, et al. Consumer health concepts that do not map to the UMLS: where do they fit?  J AM Med Inform Assoc. 2008; Jul-Aug; 15(4):496-505. [download pdf]

  3. Goryachev S, Zeng-Treitler Q, Smith CA, Browne AC, Divita G, Keselman A, et al. Making primarily professional terms more comprehensibile to the lay audience.  AMIA Annu Symp Proc. 2008:956.

  4. Keselman A, Logan R, Smith CA, Leroy G, Zeng-Treitler Q. Developing informatics tools and strategies for consumer-centered health communication.  J AM Med Inform Assoc. 2008; Jul-Aug; 15(4):473-83. [download pdf]

  5. Leroy G, Helmreich S, Cowie JR, Miller T, Zheng W. Evaluating online health information: beyond readability formulas.  AMIA Annu Symp Proc. 2008:394-8. [download pdf]

  6. Smith CA, Wicks PJ. PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy.  AMIA Annu Symp Proc. 2008:682-6. [download pdf]
     
  7. Leroy G, Miller T, Rosemblat G, Browne A. A Balanced Approach to Health Information Evaluation: A Vocabulary-based Naive Bayes Classifier and Readability Formulas.  J AM Soc Infor Sci and Tech, Forthcoming 2008. [download pdf]

  8. Miller T, Leroy G. Dynamic Generation of a Health Topics Overview from Consumer Health Information Documents.   International J of Biomed Eng and Tech. Forthcoming. [download pdf]

  9. Leroy G. Improving Literacy with Information Technology.   in Encyclopaedia of Healthcare Information Systems, N. Wickramasinghe and E. Geisler, Ed.: Idea Group, Inc, 2008. [download pdf]
2007
  1. Zeng-Treitler Q, Kim H, Goryachev S, Keselman A, Slaughter L, Anott Smith C. Text characteristics of clinical reports and their implications for the readability of personal health records.  Medinfo 2007; p. In press [download pdf]

  2. Qing T Zeng, PhD; Tony Tse, PhD; Guy Divita, MS; Alla Keselman, PhD; Jon Crowell1, MS; Allen C Browne, MS; Sergey Goryachev, MS; Long Ngo1, PhD Term Identification Methods for Consumer Health Vocabulary Development Journal of Medical Internet Research Vol 9, No 1 (2007) [download pdf]

  3. Alla Keselman, Tony Tse, Jon Crowell, Allen Browne, Long Ngo, Qing Zeng Assessing Consumer Health Vocabulary Familiarity: An Exploratory Study. Journal of Medical Internet Research. Vol 9, No 1 (2007)  [download pdf]

  4. Zeng Q, Goryachev S, Kim HE, Keselman A, Rosebaum D, Tsai, C Making Texts in Electronic Health Records Comprehensible to Consumers: A Prototype Translator. AMIA 2007; p. In press   [download pdf]

  5. Keselman A, Slaughter L, Arnott-Smith C, Kim HE, Divita G, Browne A, Tsai C, Zeng-Treitler, Q Towards Consumer-Friendly PHRs: Patients� Experience with Reviewing Their Health Records AMIA 2007; p. In press   [download pdf]

  6. Kim HE, Goryachev S, Rosemblat G, Browne A, Keselman A, Zeng, Qing Beyond Surface Characteristics: A New Health Text-Specific Readability Measurement. AMIA 2007; p. In press   [download pdf]

  7. Tsai CC, Tsai SH, Zeng-Treitler Q, Liang BA. Patient-centered consumer health social network websites: a pilot study of quality of user-generated health information.  AMIA Annu Symp Proc. 2007:1137.

  8. Miller T, Leroy G, Chatterjee S, Fan J, Thoms B. A Classifier to Evaluate Language Specificity of Medical Documents.   Fortieth Annual Hawaii International Conference on System Sciences (HICSS), Waikoloa, Big Island, Hawaii, January 3-6, 2007. [download pdf]
2006
  1. Zeng QT, Crowell J, Plovnick RM, Kim E, Ngo L, Dibble E. Assisting consumer health information retrieval with query recommendations. J Am Med Inform Assoc. 2006 Jan-Feb;13(1):80-90. [download pdf]

  2. Zeng QT, Tse T. Exploring and developing consumer health vocabularies. J Am Med Inform Assoc. 2006 Jan-Feb;13(1):24-9 [download pdf]

  3. Zeng QT, Crowell, J. Semantic Classification of Consumer Health Content. MEDNET 2006. [download pdf]

  4. Keselman A, Tse T, Crowell J, Browne A, Ngo L, Zeng QT. Assessing Consumer Health Vocabulary Familiarity: An Exploratory Study. MEDNET 2006. [download pdf]

  5. Rosemblat G, Logan R, Tse T, Graham L. Test Features and Readability: Expert Evaluation of Consumer Health Text. MEDNET 2006. [download pdf]

  6. Leroy G, Eryilmaz E, Laroya B. Health Information Text Characteristics. AMIA 2006. (first validation study of Consumer Health Vocabulary) [download pdf]

  7. Scott-Wright A, Crowell J, Zeng Q, Bates D, Greenes R. Analysis of Information Needs of Users of MEDLINEplus, 2002-2003. AMIA 2006. [download pdf]

 

2006

 

2005

  1. Zeng QT, Kim E, Crowell J, Tse T. A Text Corpora-Based Estimation of the Familiarity of Health Terminology Proceedings of the Sixth International Symposium on Biological and Medical Data Analysis, ISBMDA'05 2005 [download pdf]

  2. Slaughter L, Ruland CM, Rotegard AK. Mapping Cancer Patients' Symptoms to UMLS Concepts. American Medical Informatics AMIA 2005

  3. Slaughter L, Rindflesch T, Soergel D. Semantic representation of consumer questions and physician answers. International Journal of Medical Informatics, 2005 Aug 23 [MEDLINE citation]

  4. Zeng QT, Tse T, Crowell J, Divita G, Roth L, Browne AC. Identifying Consumer-Friendly Display (CFD) Names for Health Concepts. Proc AMIA Symp 2005 [download pdf]

  5. Crowell J, Zeng QT, Tse T. A Web Application to Support Consumer Health Vocabulary Development. Proc AMIA Symp 2005 [download pdf]

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2004

  1. Hsieh Y, Hardardottir GA, Brennan PF Linguistic Analysis: Terms and Phrases Used by Patients in E-mail Messages to Nurses Medinfo. 2004;2004:511-5. [download pdf]

  2. Smith B, Fellbaum C. Medical WordNet: A new methodology for the construction and validation of information resources for consumer health. Proceedings of Coling: The 20th International Conference on Computational Linguistics, Geneva 23-27 August 2004. [download pdf]
    [NOTE: pp. 2-3 - "Background and Motivation": Recent studies of the use of computer-based tools for consumer health information retrieval point to a mismatch between existing tools and the non-expert language used by most consumers - the language used not only by patients but also by family members, advisors, administrators, lawyers, and so forth, and to some degree also by nurses and physicians. (Slaughter, 2002), (C. A. Smith, et al., 2002), (Tse, 2003), (Tse and Soergel, 2003), (McCray and Tse, 2003), (Zeng, et al., in press).
          Where the usage of medical terms by professionals is at least in principle subject to control by standardization efforts, the highly contextually dependent usage of medical terms on the part of lay persons is much more difficult to capture in applications - and this in spite of the fact that it is in many ways simpler than expert usage. The taxonomies reflecting popular lexicalizations in all domains are indeed much less elaborate at both the upper and lower levels than in the corresponding technical lexica. (Medin and Atran, eds., 1999) Thus there are no popular terms linking infectious disease and mumps, so that in the popular medical taxonomy of diseases the former immediately subsumes the latter. The popular medical vocabulary naturally covers only a small segment of the encyclopedic vocabulary of medical professionalsm, and it lexicalizes mainly at the level of taxonomic orders. Popular medical terms (flu) are often fuzzier than technical medical terms. Many popular terms also cover a larger range of referent types than do technical terms; others may cover only part of the extension of their technical counterparts. We hypothesize, however, that with few exceptions the focal meanings (Berlin and Kay, 1969) of expert and non-expert terms will be identical. Constructing MFN and MBN allows us to test this and related hypotheses in a systematic way."]

  3. Zeng QT, Kogan S, Plovnick R, Crowell J, Greenes RA, Lacroix EM Positive attitude and failed queries: an exploration of the conundrums of consumer health information retrieval Int J Med Inf. 2004; [MEDLINE citation]

  4. Crowell J, Zeng Q, Ngo L, Lacroix EM A Frequency-based Technique to Improve the Spelling Suggestion Rank in Medical Queries J Am Med Inform Assn. 2004. [download pdf]

  5. Cole C, Kanter AS, Cummens M, Vostinar S, Naeymi-Rad F. Using a terminology server and consumer search phrases to help patients find physicians with particular expertise. Medinfo. 2004;2004:492-6. [download pdf]
    [NOTE: Uses IMO Personal Health Terminology - "a medical lexicon containing both provider and patient descriptions for medical concepts. IMO PHT is mapped to several standard vocabularies including ICD-9, UMLS, MeSH and SNOMED(R)-CT." (p. 495).]

  6. Soergel D, Tse T, Slaughter L. Helping healthcare consumers understand: an "interpretive layer" for finding and making sense of medical information. Medinfo. 2004;2004:931-5. [MEDLINE citation] [download pdf]

  7. Lorence DP, Spink A. Semantics and the medical web: a review of barriers and breakthroughs in effective healthcare query. Health Info Libr J. 2004 Jun;21(2):109-16. [MEDLINE citation]

  8. Eysenbach G. Challenges (and opportunities) to accessing health information (on the web). Closing Keynote at Canadian Health Libraries Association / Association des bibliotheques de la sante du Canada (CHLA/ABSC) Conference 2004. [download pdf]
    [NOTE: Slide #33 ("What site developers can do to overcome the findability barrier") 4th bullet:
    *Search engine on site
           - consumer health vocabulary mapped to professional vocabulary]

  9. Lindberg D. Making Health Information Available to the Public: The Federal Opportunity. Proceedings of the second national conference on scientific and technical data: data for science and society. U.S. National Committee for CODATA, Office of International Affairs, National Research Council; National Academy Press: Washington DC. 2001. [full text]
    [NOTE: " I think we also have to look forward to the development of new technology. In my view, this will include in the area of linguistics, for example, a better-developed consumer health vocabulary."]

  10. Gemoets D., Rosemblat G., Tse T., Logan R. Assessing Readability of Consumer Health Information: An Exploratory Study. Medinfo 2004;2004:868-873 [download pdf]

 

2003

  1. Browne AC, Divita G, Aronson AR, McCray AT UMLS Language and Vocabulary Tools Proc AMIA Symp. 2003;798. [download PDF]

  2. Bader JL, Theofanos MF. Searching for cancer information on the internet: analyzing natural language search queries. J Med Internet Res. 2003 Dec 11;5(4):e31. [full text]

  3. Tse T, Soergel D Exploring medical expressions used by consumers and the media: an emerging view of consumer health vocabularies Proc AMIA Symp. 2003: 674-8. [download pdf]

  4. Tse T, Soergel D Procedures for mapping vocabularies from non-professional discourse and a case study from the medical domain Proc ASIST Annual Meeting. 2003. p. 174-83. [download pdf]

  5. Tse AS Identifying and characterizing a "Consumer Medical Vocabulary" 2003 March. Doctoral Dissertation College Park (MD): College of Information Studies, University of Maryland Directed by Prof. Dagobert Soergel.

  6. Boxwala AA, Zeng Q, Chamberas A, Sato L, Dierks M Coverage of patient safety terms in the UMLS Metathesaurus Proc AMIA Annual Fall Symposium; 2003; 110-114. [download pdf]

  7. Crowell J, Zeng Q, Kogan S A technique to improve the spelling suggestion rank in medical queries Proc. Am. Med. Info. Assoc. Fall Symposium (AMIA '03), Washington, D.C., November 2003. [Poster] [MEDLINE citation]

  8. Brennan PF, Aronson AR Towards linking patients and clinical information: detecting UMLS concepts in e-mail J Biomed Inform. 2003 Aug-Oct;36(4-5):334-41. [MEDLINE citation]

  9. Chapman K, Abraham C, Jenkins V, Fallowfield L Lay understanding of terms used in cancer consultations Psychooncology. 2003 Sep;12(6):557-66. [MEDLINE citation]

  10. Zielstorff RD Controlled vocabularies for consumer health J Biomed Inform. 2003 Aug-Oct;36(4-5):326-33. [MEDLINE citation]

  11. Philip Marshall, WellMed, Inc. Personal Health Records: Their Benefits and the Role of Standards. [download PDF]
    [NOTE: See Slides 15 ("Reference Slide 2 - Consumer Terminologies") and 16 ("Reference Slide 3 - a consumer terminology case study: WellMed's CHT")]

 

2002

  1. Zeng Q, Kogan S, Ash N, Greenes R, Boxwala A Characteristics of consumer terminology for health information retrieval Methods of Information in Medicine 2002;41:289-298. [MEDLINE citation]

  2. Smith CA, Stavri PZ, Chapman WW In their own words? A terminological analysis of e-mail to a cancer information service Proc AMIA Symp. 2002;697-701. [download pdf]
  3. Slaughter, L. Semantic Relationships in Health Consumer Questions and Physicians' Answers: A Basis for Representing Medical Knowledge and for Concept Exploration Interfaces. Doctoral dissertation, University of Maryland at College Park, 2002 [abstract] [entire dissertation]
    [Note: Discusses differences in mental models of consumer and professional language.]

  4. Nath R. Consumer Health Vocabularies Presented at ntnl committee on vital & health statistics wrkgrp on the ntnl health information infrastructure, July 24, 2002 [download pdf]

  5. Meeting Minutes. Workgroup on the National Health Information Infrastructure. National Committee on Vital and Health Statistics, Department of Health and Human Services: Chicago IL. July 24, 2002. [Full text]

 

2001

  1. Patrick TB, Monga HK, Sievert ME, Houston Hall J, Longo DR Evaluation of controlled vocabulary resources for development of a consumer entry vocabulary for diabetes J Med Internet Res. 2001 Jul-Sep;3(3):E24. [full text] [MEDLINE citation]

  2. Kogan S, Zeng Q, Ash N, Greenes RA Problems and challenges in patient information retrieval: a descriptive study Proc AMIA Symp 2001:329-33. [MEDLINE citation]

  3. Zeng Q, Kogan S, Ash N, Greenes RA Patient and clinician vocabulary: how different are they? Medinfo 2001;10(Pt 1):399-403. [download pdf] [MEDLINE citation]

  4. Lewis D, Brennan PF, McCray AT, Tuttle M, Bachman J If we build it, they will come: standardized consumer vocabularies Medinfo. 2001;2001:1530 [download pdf]

  5. Lewis D, Brennan PF, McCray AT, Tuttle M, Bachman J. Panel: Representing Consumers Health Information Needs through Standardized Consumer Health Vocabularies: Issues and Implementations. Year? (MEDINFO 2001?) [download PDF]

2000

  1. United States National Library of Medicine, National Institutes of Health: Long Range Plan 2000-2005. GOALS AND OBJECTIVES. [full text]

    Under "Objective 4.1 - Further Medical Informatics Research"
    "Develop a consumer health terminology server to provide assistance to the increasing members of the general public who are users of NLM's Web-based systems, including spelling correction algorithms and investigation of multi-language interfaces."

  2. Shiri AA, Revie C. Thesauri on the Web: current developments and trends. Online Information Review. 2000;24(4):273-9. [download pdf]
    [NOTE: "The Consumer Health Terminology (CHT) Thesaurus provides consumers with online access to more than one million medical phrases and terms. The CHT Thesaurus is derived from Lexical's Metaphrase(R) Thesauri on the Web: current developments and trends which in turn is based upon the UMLS1 Metathesaurus1, a compendium of controlled medical vocabularies maintained in part by Lexical under contract to the National Library of Medicine.
          The CHT Thesaurus contains approximately one million medical definitions, phrases and terms, which have been inter-related over the past ten years. The CHT Thesaurus is especially useful to consumers because it includes more than 14,000 WellMed-developed consumer and lay terms that are mapped into these other vocabularies.
          Using the CHT Thesaurus, search engines will be able to refine common search, providing users with the most appropriate information on the first try." (pp. 276-7)]

  3. Lerner EB, Jehle DV, Janicke DM, Moscati RM Medical communication: do our patients understand? Am J Emerg Med. 2000 Nov;18(7):764-6. [MEDLINE citation]

  4. Marshall PD Bridging the terminology gap between health care professionals and patients with the Consumer Health Terminology (CHT) Proc. AMIA Symp. 2000:1082 [download pdf]

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1990-1999

  1. McCray AT, Loane RF, Browne AC, Bangalore AK Terminology issues in user access to Web-based medical information Proc AMIA Symp. 1999;107-11. [download pdf] [MEDLINE citation]

  2. Cosgrove TL Planetree health information services: public access to the health information people want Bull Med Libr Assoc. 1994 Jan;82(1):57-63. [MEDLINE citation]

  3. Hadlow J, Pitts M The understanding of common health terms by doctors, nurses and patients Soc Sci Med. 1991;32(2):193-6. [MEDLINE citation]

  4. Spees CM Knowledge of medical terminology among clients and families Image J Nurs Sch. 1991 Winter;23(4):225-9. [MEDLINE citation]

 

1980-1989

  1. Scott N, Weiner MF 'Patientspeak': an exercise in communication J Med Educ. 1984 Nov;59(11 Pt 1):890-3. [MEDLINE citation]

  2. Spiro D, Heidrich F Lay understanding of medical terminology J Fam Pract. 1983 Aug;17(2):277-9. [MEDLINE citation]

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  12. Please help us make this list more comprehensive by forwarding citations to consumer health vocabulary research that do not appear in this listing. You may email the webmaster with suggestions.