ENCODE-FM. Electronic Nomenclature and Classification Of Disorders and Encounters for Family Medicine CODE-MF

Transcription

1 ENCODE-FM Electronic Nomenclature and Classification Of Disorders and Encounters for Family Medicine CODE-MF Codification Électronique pour la Médecine Familiale Developed by: Robert M. Bernstein PhD, MD,CM, CCFP, FCFP Gary R. Hollingworth MD, CCFP, FCFP Gary S. Viner BSc, MD, CCFP, FCFP

2 ENCODE-FM Electronic Nomenclature and Classification Of Disorders and Encounters for Family Medicine CODE-MF Codification Électronique pour la Médecine Familiale Version 5.0 November 2009 Developed by: Robert M. Bernstein PhD, MD, CM, CCFP Gary R. Hollingworth MD, CCFP, FCFP Gary S. Viner BSc, MD, CCFP The CLINICAL VOCABULARY contained in this publication is copyrighted and all rights are reserved. It may not be copied, reproduced or translated to any electronic medium or machine-readable form without prior consent in writing from INSITE-Family Medicine Inc. Copyright 1997, 2001, 2004, 2006, 2009 INSITE-Family Medicine Inc. INSightful Information TEchnologies for Family Medicine 1943 Wembley Ave., Ottawa, Ontario, Canada K2A 1A8 ISBN Printed in Canada

3 Acknowledgments INSITE-Family Medicine Inc. wishes to acknowledge The Centre for Information Technology Innovation (CITI) of Industry Canada and Clinidata Inc. for financial support of ENCODE-FM version 2.0 to provide for its use in The College of Family Physicians of Canada Clinical Practice Management Network. The authors are indebted to: The World Organization of Family Physicians (WONCA) Classification Committee and Professor Charles Bridges-Webb, it s Retired Chairperson for leadership in classification in international primary care The authors would particularly like to thank: Dr. Maurice Wood for introducing us to ICPC, and Drs. Maurice Wood and Henk Lamberts for their outstanding contributions to research in standardized data collection in primary care, and for their many years of encouragement of our efforts.

4 CONTENTS WHAT S NEW IN VERSION 5.0 November iv WHAT S NEW IN VERSION 4, build iv WHAT S NEW IN VERSION v WHAT S NEW IN VERSION 3... v AVAILABILITY & UPGRADES...vi PREFACE...vi DESCRIPTION... vii STRUCTURE... viii FUNCTIONAL GUIDELINES...xi PLANS FOR FUTURE UPGRADES...xi EVALUATION OF TERMINOLOGIES... xii RELIABILITY...xiv STANDARDIZED DATA COLLECTION... xv REFERENCES AND BIBLIOGRAPHY...xvi ENCODE-FM 5.0 Section Title Page A General A 1-31 B Hematologic System B 1-6 D Digestive System D 1-18 F Eye and Adnexa F 1-12 H Ear H 1-4 I Perinatal or Infancy Period I 1-7 K Cardiovascular System K 1-11 L Musculoskeletal System L 1-24 N Neurological System N 1-16 P Psychology and Psychiatry P 1-18 R Respiratory System R 1-11 S Skin/Subcutaneous Tissue S 1-15 T Nutrition, Metabolism or the Endocrine System T 1-11 U Urinary System U 1-8 W Contraception and Obstetrics W1-16 X Female Breast and Genital System X 1-12 Y Male Breast and Genital System Y 1-6 Z Social Z 1-17 iii

5 WHAT S NEW IN VERSION 5.0 November new terms focussing mainly on interprofessional environments and the needs of social workers, occupational therapists, nursing and dietitians. 34 terms were modified, mostly ICPC and ICD-10 mappings. All versions are back compatible with previous versions. WHAT S NEW IN VERSION 4, build The main modifications maintain compatible mappings between the new changes in ICPC-2R (WONCA 2005) and ICD-10. Three new tables in addition to the standard complete file o A table in which all the Rubrics are combined into one column for easier import into an EHR. The embedded hierarchical numbering scheme still allows an indented hierarchical display. o A table of all key words in ENCODE with their related numbers, and rubrics in English o A table of all key words in ENCODE with their related numbers, and rubrics in French The latter 2 files allow rapid identification of a term based on a key word in a single step. Interfaces can then be designed to search for a second word within the list for the first. Both files allow easier development of clinical interfaces in French and English 79 new terms including AVIAN influenza pneumonia and the newest Bethesda PAP naming conventions. 236 terms were modified, mostly ICPC and ICD-210 mappings All versions are back compatible with previous versions. iv

6 WHAT S NEW IN VERSION new terms including extensive additions to o social o dietary and o family history. done in conjunction with the social workers and dietitians in the Ontario Community Health Centres to more accurately reflect those issues in primary care. 17 terms were modified. 2 terms were retired o 15 Hierarchy modifications WHAT S NEW IN VERSION new terms including extensive additions in the social and community issues areas, especially community health promotion and activism issues. Many of these terms have never appeared in any systematic terminology and have no corresponding maps to the standard classifications. Social and psychiatric chapters have been revised in conjunction with social workers in the Ontario Community Health Centres to more accurately reflect those issues in primary care terms were modified, by wording changes, or mapping changes or both. These changes include the new standard classifications of diabetes, lung cancer and the Bethesda PAP system. o o o o o o 6 terms were retired 1585 ICPC map changes based on the new ICPC-ICD-10 conversion structure included in the electronic version of ICPC [reference] 198 Map changes to ICD Map changes to ICD-9 CM 143 Hierarchy modifications 246 non-standard maps New term attributes for tracking version changes more accurately v

7 AVAILABILITY & UPGRADES ENCODE-FM is also available in an electronic standard database format (English and French versions) for incorporation into electronic databases and electronic medical records, and as a stand-alone browser (ENCODE-R). INSITE-Family Medicine Inc. recognizes that distribution and acceptance of a standard nomenclature cannot be impeded by excessive cost. License and maintenance fees will therefore be structured with this in mind and will also be determined by the scope and use of specific applications. INSITE-Family Medicine Inc. has two separate licensing agreements for the electronic version based upon the purchaser's intended use for ENCODE-FM. 1. If it is to be used by a single individual in his/her own EMR and not for resale, there is a one time license fee with a small fee for updates, 2. If it is to be included in a vendor's EMR, licensing and yearly maintenance fees will be based upon specific arrangements with each vendor according to the number of users and the type of license that vendor has with its customers. The goal is to provide a quality family medicine terminology whose use is not hampered by cost. The maintenance fee covers all updates and changes based on feedback from users and changes to the standard international classifications to which ENCODE-FM maps. A maintenance fee is necessary due to the fact that the nomenclature is dynamic and updates are labour intensive. The costs to maintain the vocabulary increase based on the number of users because of the variations in personal terminology. INSITE does consider discounts for multiple users at any one site. ENCODE-FM will be updated on a regular basis (usually twice yearly) with relevant additional terms as deemed necessary by both the authors and users. In order to maintain the relevance and accuracy of ENCODE-FM, the authors would appreciate licensees to: 1) provide feedback regarding omissions, errors, and unnecessary terms, and 2) provide a failed look-up" table of terms for possible inclusion into ENCODE-FM updates. Changes to the ICPC-ICD-10 correspondences continue to be made based on the work of the WONCA classification committee (on which Dr. Bernstein is the Canadian representative). The classification committee has published and continues to update a two-way conversion between ICPC and ICD-10. [Reference 5]. Evolving internationally standard maps between ICPC and ICD-10 will be consolidated and ENCODE-FM will be updated accordingly. On occasion, INSITE-Family Medicine Inc. has chosen a more precise non standard map, and indicates this in the ENCODE data file. PREFACE ENCODE-FM is a systematic and hierarchical controlled clinical terminology for family medicine, intended for use in electronic medical records. ENCODE-FM was derived from our knowledge of ICPC, ICD-10, the ICPC alphabetical index and our 20 year experience with clinical family medicine and a computerized vocabulary based on ICHPPC-2. ENCODE-FM has been designed expressly for use at point of service in primary care. We have addressed the issues of ease of data entry and accuracy of aggregate data retrieval in its design, the mapping to other classifications, and choice of words and terms. Published research [Reference 10] has shown that none of the large nomenclatures intended to cover the whole health care system, each of over 100,000 terms, covers all clinical content or even all diseases. On the other hand ENCODE-FM makes no claim to be an overarching nomenclature of medicine. It was designed to do one part of that task well - namely to be a CLINICAL terminology of ONLY symptoms, complaints, diagnoses, disorders and reasons for encounter for use in primary care electronic records. It vi

8 is intended to facilitate data entry by the caregiver, and to allow data aggregation by the 3 internationally recognized classifications of disease used most commonly in primary care ICPC, ICD9-CM and ICD-10. Our own research [References 3, 8 & 11] shows that coding of terms from a clinical record using ENCODE-FM produced highly reliable classification by both ICPC and ICD-10. Since it is obvious that all possible terms cannot be included in ENCODE-FM, the question arises of how to deal with rare diagnoses and terms that a clinical practitioner cannot find. We propose the following mechanism: 1. Vendors of electronic records must maintain a failed lookup table in which any term not found is recorded and fed back to the authors of ENCODE-FM; 2. The authors will take all failed lookups, add terms as clinically relevant to ENCODE-FM, and map ALL terms to ICPC and ICD-10; 3. Those terms added to ENCODE-FM will become part of its next revision; 4. All terms which are considered rare enough will not be included in future revisions BUT the onus is on the vendor using ENCODE-FM, by appropriate programming, to continue to allow their use locally by the individual physicians who need them. 5. All such terms maintained locally MUST be exportable with the relevant patient records, and searchable by using the ICPC and ICD-10 maps; DESCRIPTION ENCODE-FM contains 9853 terms. Of these, approximately 65% cannot be uniquely identified by their ICPC/ICD-10 number combination, i.e. are totally unique to ENCODE-FM. It includes the myriad of terms for reasons for encounter. These terms are not part of the ICD-10 scheme and their exclusion makes ICD a poor vocabulary for primary care. Since in primary care the reason for encounter determines much of the downstream cost of care, having the ability to record it allows more meaningful analysis of patterns of health care. It includes relevant terms in local use either as hierarchical categories or as synonyms. Terms have been written where necessary to reflect clinical linguistic usage. All terms can be accessed by using ICPC however the classification terms in ENCODE-FM 4.0 are often modified from the ICPC terms. For instance Sympt/complt mouth/tongue/lip (D20) was split to become Symptom/Complaint of mouth; Symptom/Complaint of tongue; Symptom/Complaint of lips, each with a unique code number and each with more specific terms and synonyms underneath. All three headings AND their associated hierarchy of terms would by found by searching for the ICPC D20 code, yet they are split for purposes of having more specificity in the clinical record. In addition to symptoms and complaints, diseases and disorders, ENCODE-FM has terms in appropriate chapters for risk factors (e.g. risky sexual behaviour), family history of illness (e.g. family history of thalassemia), external causes of morbidity (e.g. abused child), and reasons for encounter, other than symptoms and diseases (e.g. request for driver's form/examination). In designing a terminology, decisions and compromises must be made to prevent the malignant spread of unnecessary terms, and to maintain a standard mode of expression. In most cases these compromises do not affect the users ability to find and choose an appropriate term. We expressly considered all terms at the 4 digit level in ICD-10 but not all ICD-10 terms have been mapped. Only those which are clinically relevant and which fit the criteria of being unambiguous, precise and exclusive, or which add useful variants to the synonym dictionary were included in the vii

9 hierarchy of ENCODE-FM. Terms like pneumonia in diseases classified elsewhere were specifically excluded. By convention, any term in ENCODE-FM that says disorder of does NOT include those disorders which are infectious, inflammatory, neoplastic, traumatic, or congenital. These are specified separately. Correct international spellings are used for proper names and French terms, e.g. Folie à Deux. Terms from other languages, such as Sjogren s syndrome are spelled with their international accents. In most cases American spellings are included as synonyms. All other terms use American spellings, e.g. hematology not haematology, esophagus not oesophagus, tumor not tumour. Sometimes conflicts arose in the proper placement of a term. These conflicts tended to be between site and etiology - we chose to maintain the etiologic classification. Oftentimes the ICD-10 coding scheme requires double coding, especially in classifying infectious diseases, and the two codes are identified with a dagger or asterix in the ICD-10 book. Since we maintain a one term-one map policy, if one code provided greater specificity it was chosen as the best map to ICD-10. If neither code was specific, the one with the greatest clinical relevance was chosen. For example, gonococcal prostatitis has 2 possible ICD-10 codes - a54.2: gonococcal pelviperitonitis and other gonococcal genitourinary infections and n51.1: disorders of prostate in diseases classified elsewhere. We chose to map it to a54.2 since clinically it was most relevant and specific. All of these potential double codings may be controversial and we welcome feedback from users. In either case, since the ENCODE-FM term is very specific (gonococcal prostatitis) BOTH of the ICD-10 maps can be derived from the ICD-10 publication (see bibliography) by anyone interested in complete ICD coding. The maps from ICPC to ICD-10 in ENCODE-FM usually but not always follow the published ICPC to ICD-10 conversion structure. (Lamberts, Wood and Hofmans-Okkes) In some cases the ENCODE- FM maps are more specific and we believe them to be a better fit. Issues of ICPC to ICD-10 mapping will ultimately be adjudicated at the WONCA Classification Committee and incorporated into future revisions of ENCODE-FM. Terms are written in the singular, plurals are avoided unless clinically sensible (e.g. Intestinal Worms & Parasites) We classified terms based on their customary clinical usage. This means for example that external and middle ear neoplasms are in the Ear chapter, but acoustic neuroma is in the neurological chapter. STRUCTURE The distributed file is in Microsoft Excel format for IBM compatible computers. This file format may be converted by users to other formats as required. The following table describes the different columns in the disk file - programmers may feel free to use any numbering scheme that best fits their application, however they are REQUIRED to maintain the exact wording and the unique number since it will ALWAYS be assigned to that term. viii

10 ENCODE-FM fields in the disk file SeqNo No Retired PKA RDate Modified MDate Parent Preferred Chapt I1 to I9 S Syn Ab ICPC ICD-10 ICD9CM OHIP Level H0 to H9 Synonym French Changes Sequence number of all terms The unique number for each term, which will NEVER be changed. In version 1, the sequence number and the unique number were identical A flag to indicate if a term is no longer in current use or is a header term not intended for use in a clinical record. 0 = current use; 1 = retired or header Previously Known As (not currently in use) Date Retired A flag indicating if a term has been changed from the previous version. 0 = unchanged; 1 = modified; 2 = second modification Date Modified The unique number of a given term s parent term The unique code of the preferred term of a synonym The ENCODE-FM chapter designation The ENCODE-FM chapter designation is followed by a series of index numbers describing a term s place in the hierarchy, e.g. B Hematologic System B Symptom/Complaint/Sign of the Hematologic System B Bad Blood B Low Blood B Symptom/Complaint of Lymphatic Glands B Painful Gland B Lymphadenopathy B Enlarged Lymph Node B Swollen Gland Synonym number (numeric form) Synonym number (AlphaNumeric form) Abbreviation indicator (currently unused) The ICPC code map The ICD-10 code map The ICD-9 CM code map The Ontario Ministry of Health Diagnosis code The level of indentation of the term in ENCODE-FM The specific rubrics arranged hierarchically Synonym terms related to the preferred term directly above - [displayed in italics] The French translation of the English term An explanation of the changes for modified terms, including non-standard maps The internal structure is organized first by body system, as is ICPC. However we have added an 18th system chapter to address the specific issues of the perinatal and infancy period. In addition, Chapter Z (Social problems) has been updated with terms related to community health many of which are not represented in any other standard terminology and are unique to ENCODE. Within each system chapter the terms are divided into categories of 1) symptoms and complaints, 2) general disorders, 3) infectious and inflammatory disorders, 4) benign and malignant neoplasms, 5) trauma and 6) congenital disorders. The separation of categories is maintained across all body system chapters and allows the user to find all e.g. infectious diseases of the neurological system simply and rapidly. ix

11 Terms are arranged in a hierarchy from general to specific within each etiologic category. Thereare up to 10 levels of hierarchy plus synonyms. This meant that the traditional structures of ICPC and ICD-10 - specific terms first, followed by ragbags (e.g. other diseases of the digestive system) - had to be inverted. Since no ragbag terms exist in ENCODE-FM the initial term in a hierarchical tree structure is the general term (e.g. general disorder of the respiratory system) under which are placed the specific terms in the hierarchy. Each term in ENCODE-FM stands alone and can be used in an electronic record without reference to the rest of the terminology. There are no ragbags or terms with the modifiers NOS, NEC ; and only rarely unspecified. There are no duplicate terms. Biaxial classification in ENCODE-FM : SYSTEM CATEGORY Symptom/ Complaint/ Sign General Disorder (not Infectious, Inflammatory, Neoplastic, Traumatic, Congenital) Infection/ Inflammation Neoplasm Unspecified Benign or Malignant Trauma Congenital Anomaly/ Malformation A- General B- Hematologic System D- Digestive System F- Eye and Adnexae H- Ear I - Perinatal or Infancy Period K- Cardiovascular System L- Musculoskeletal System N- Neurological System P- Psychology and Psychiatry R- Respiratory System S- Skin/Subcutaneous Tissue T- Nutrition, Metabolism or the Endocrine System U- Urinary System W- Contraception or Obstetrics X- Female Breast or Genital System Y- Male Breast or Genital System Z- Social and Community x

12 FUNCTIONAL GUIDELINES The following guidelines are suggested in recognition of the fact there are many possible user interfaces to a clinical terminology, and that the use of a terminology both clinically and for epidemiological recording requires that terms be chosen as much as possible without error. 1. The records system should ensure that the most appropriate term is displayed during a term search: by allowing the user to search for terms in the whole terminology; in each chapter; and by etiologic classification by allowing natural language searching: the user types in a partial term and the system returns a list of terms with that text string, e.g. typing catar returns all types of cataracts and catarrh 2. The records system should allow the user to be situated in the terminology and ensure that a chosen term is the most appropriate by allowing the user to walk through the hierarchical structure of terms by displaying the location of the term in the hierarchy and at least one level above and below the term selected as well as synonyms of the primary term by allowing the user to select any term from the displayed list By displaying clear distinctions between different locations in the hierarchy, e.g. symptoms vs. disorders. 3. The user of the record should be able to employ a term that s/he may not be able to find in the terminology. The computerized record should allow the user to add locally used terms and terms of increasing specificity at the time of data entry in such a way that: those terms are always retained in the record in a "failed look-up table" those terms can be mapped to ICPC, ICD9-CM and ICD-10 so that clinical classification can occur. the clinical terminology and classification tables are not contaminated by new terms which cannot be identified as such, and which have not been approved by the authors of the terminology. the new term can be used for alerts, prompts and reminders This will serve to allow individual idiosyncrasies and yet retain standardized information 4. The records system should allow updating of the terminology without losing or changing previously recorded information. The critical aspect is that the text rubric and unique number be retained exactly as it was recorded by the physician along with the ICPC and ICD-10 mapped codes. PLANS FOR FUTURE UPGRADES Extension to ICD10-CA Classification by body site and other attributes. Continuing evolution of ENCODE based on user feedback and changes to standard international classifications. xi

13 EVALUATION OF TERMINOLOGIES The following lists the criteria we believe to be important for the success of a controlled clinical terminology (CCT) at the point of service in an electronic medical record (adapted from Bernstein, Hollingworth and Viner) 1. The CCT must contain only terms which are used and are clinically relevant to primary care 2. The CCT must cover sufficient clinical medicine including symptoms and complaints, health problems and diagnoses so that appropriate terms are rapidly available 3. The CCT must emphasize localization (which is static) before etiology (which is dynamic) 4. The structure must be hierarchical, so that addition of new can be made to the coding scheme terms in a logical and ordered fashion where more specificity is needed without losing the underlying structure of the classification 5. Each term must be unambiguous, exclusive and precise. It cannot contain ragbag terms with modifiers like not elsewhere classified (NEC) or not otherwise specified (NOS). One entity has only one standard or preferred term and each term can stand alone in the clinical record. 6. The CCT must contain a synonym dictionary with common synonyms being present, and each synonym being linked to a parent or preferred term. Each term and synonym must have a unique code number. 7. The CCT must be able to be used internationally, by mapping to standard the classifications ICPC and ICD-10. Coded data from use in different languages should produce the same frequency distribution. 8. The CCT must be multi-dimensional, organized conceptually and hierarchically to allow linkages between concepts for decision support. 9. The CCT must ensure that signal to noise is minimized. This is at least partly a function of the number of terms in the vocabulary. Although there is no evidence, international experience suggests that a family or general practice set of terms be about 10, The CCT must be affordable by solo practitioners. The following table shows a comparison of the native ICPC/ICD-10 combination with ENCODE-FM xii

14 Comparison of ENCODE-FM and ICPC/ICD-10 to Criteria for a Controlled Clinical Terminology for Primary Care [Reference 6] CRITERION Contains only terms which are used and are clinically relevant to primary care Covers sufficient clinical medicine so that appropriate terms are rapidly available Emphasis on localization (which is static) before etiology (which is dynamic) ENCODE- FM YES PROBABLE ICPC/ ICD-10 NO PROBABLE True hierarchical structure YES NO DIFFERENCES BETWEEN ENCODE-FM AND ICPC/ICD-10 ENCODE-FM has worded terms to make them conform to clinical language. ICD-10 has many non-specific classification terms. ENCODE-FM maps to the 4 digit level of ICD-10 for all primary care relevant terms, providing more specificity and accuracy. ENCODE-FM is 2.5 times larger than the published ICPC/ICD-10 (3 digit level). 60% of ENCODE-FM terms have a combination ICPC/ICD-10 number which is NOT unique, i.e. are totally unique to ENCODE-FM YES YES Identical since both follow the ICPC model Neither ICPC nor ICD-10 is a true hierarchy. Ragbag terms exist. ENCODE-FM has a true hierarchy from general to specific. No Ragbags YES NO ICPC/ICD-10 contains ragbag terms from each Each term must be unambiguous, exclusive and precise YES YES YES NO ENCODE-FM has eliminated all such terms present in both ICPC and ICD-10 Contains a synonym dictionary YES NO ENCODE-FM includes an extensive synonym dictionary with local and pet terms. Able to be used internationally YES YES Both are based on the same foundation and are equally international Should be multi-dimensional, organized conceptually and hierarchically to allow linkages between concepts for decision support. PROBABLE NO Both rely to some degree on the ICD-10 classification structure. ENCODE-FM has its own embedded hierarchical classification, and is small enough that specific groups of terms can be selected for special treatment in an electronic record. Ensures that signal to noise problem is minimized PROBABLE (NEEDS TESTING) LIKELY NOT (NEEDS TESTING) Both are much more limited terminologies than UMLS, SNOMED or READ. ENCODE-FM version 2.1 has 9331 terms. ICPC/ICD-10 (4 digit level) has about 14,500. A limited vocabulary with many ragbag terms (ICPC/ICD-10) will likely have a poorer signal to noise performance than ENCODE Affordable by solo practitioners YES YES Both are affordable. All CCT s need support for ongoing maintenance xiii

15 RELIABILITY Evaluation of terminologies for use with hospital records has focused on content coverage. Only one study to our knowledge has looked at primary care records (Reference 2), and found both the methodologies and three large vocabularies wanting. On the other hand, it is critical to see if clinical data entry can lead to reliable classification. We have evaluated ENCODE-FM for such reliability and can demonstrate that clinical encounter terms recorded using ENCODE-FM are reliably classified to ICPC AND ICD-10 [References 3, 8 & 11]. When a data entry terminology is used as a front end to an electronic health record, different users may choose different clinical terms or synonyms for the same clinical entity. It is mandatory for data aggregation and clinical decision support that CLASSIFICATION is reliable. A clinical term is highly specific, but the classification maps should produce valid classification aggregate data. For instance clinically it is important for the physician and patient to know that the patient has noninsulin dependent diabetes mellitus, but it is not important if the user enters NIDDM, Type II diabetes, or another synonym into the record. However it is critical that the all these terms map to the same classification term, and that the user is able to use the most specific term available. If in this example the user had chosen diabetes mellitus then the CLASSIFICATION to ICD-10 would be different, e14 for diabetes unspecified but e11 for NIDDM. In our study, terms for "reason for encounter" taken from a random selection of encounter forms in family practice were coded by 5 different naïve physician coders using a computerized search engine for ENCODE-FM. Intraclass correlations were calculated to see how well clinical data grouped to ICD-10 and ICPC. Intraclass correlations were.87 (p<.001) and.85 (p<.001). Thus, use of the ENCODE-FM clinical terminology resulted in highly reliable data aggregation to the standard international classifications ICD- 10 and ICPC. There were no encounter terms for which an adequate match in ENCODE could not be found. 91.7% of the matches between the encounter term and the ENCODE term were rated as excellent or good. A qualitative analysis of the terms with coding variability showed that one of two problems occurred: The encounter form term was vague and could not be interpreted by the coder There was confusion between symptoms and diagnoses suggesting that reliability of coding would be enhanced by point of service data entry as opposed to third party coding, and by specific training in the use of standardized terminologies. This means that recording reasons for encounter or diagnoses on an encounter form for batch entry by a secretary at a later time can be expected to give about 85% accuracy of classification, which we feel is extraordinarily good in comparison and that point of service data entry by the health care provider would be even more accurate. xiv

16 STANDARDIZED DATA COLLECTION The Need for Standards Morbidity in family and general practice has usually been measured using tools that are not suited to the task. In Canada for instance morbidity statistics are collected using claims data, including a billing diagnosis in primary care. The typical vocabulary employed is ICD-9. Ontario uses a condensed version of ICD-9 in which pericarditis and cardiac arrest have the same code. The Canadian Institute of Health Information (CIHI) has declared that ICD-10 will be the new Canadian standard (Implementation Study Advisory Group). ICD-10 has significant advantages over its previous version but is still a poor primary care vocabulary. It lacks many of the important symptoms, and contains classification terms such as m other specific arthropathies not otherwise classified. A terminology for recording morbidity at the point of service must have each term stand-alone. ENCODE-FM, as shown in the previous section, improves the situation considerably; allowing clinical data entry with automatic internationally standardized classification. We believe that the lack of development of standards of vocabulary has been a rate-limiting step in the use and acceptance of electronic medical records and we welcome the CIHI direction. CIHI is also in the process of developing a terminology for processes and procedures. Other areas of the record will need standards development, specifically medications. In addition, standards of data transfer including a common clinically acceptable data set and standards of laboratory test reporting will need to be implemented before a truly portable and accessible electronic record will be possible. Episode oriented epidemiology. Although clinical electronic medical records are usually based on recording patient encounters, in actual fact the unit of observation in family practice is the EPISODE of care. Episodes are a string of encounters grouped because of a common diagnostic or problem label. Episodes could be recorded using any terminology are not maintained by a vocabulary such as ENCODE-FM. However ICPC was specifically developed for the purpose of episode oriented epidemiology, and there is a large body of international data using it on the content, processes and outcomes in primary care (see [references 2, 4,12 & 16]) for a much fuller explanation of episodes, and for primary care data.) An example is a patient who presents with sore throat, gets a partial physical exam at the first visit, lymphadenopathy is noted but the diagnosis remains sore throat - a symptom. A CBC and blood test for mononucleosis is ordered. At the subsequent visit the test is noted to be positive and the diagnosis changed to mono. At a follow up visit the adenopathy is noted to be resolved and the episode of care for this problem is over. To adequately describe what happened the data recording must include the reasons for encounter, the examinations and tests, and the diagnoses. There are 3 components of this episode that are noteworthy from the point of view of an understanding of how family medicine works. The first is that the diagnosis at the end of the first visit was a symptom, not a true diagnosis in the epidemiological sense. The second is that the diagnosis of the second and third visits was different from the first. The third is that all three encounters are linked. They form an episode of care for mononucleosis. An episode may comprise one or many encounters, and each encounter may relate to one or more episodes. How can this process be captured so that we can begin to view data about family practice from the episode point of view? Clearly, any data collection system (e.g. the medical record) has to be able to link these visits together. The episode needs to be identified by the physician and the chain of encounters maintained. Yet our records are not structured in this way and we have not been trained to perform this particular bit of charting. We cannot simply automatically link encounters by diagnosis because the diagnosis changes over time. We cannot simply link all encounters for each patent because patients have multiple unrelated episodes of care in their life with a family doctor. For example hypertension is ONE episode with multiple encounters over years. Interdigitated, the patient may have episodes of URI s, osteoarthritis and diabetes. Each of these episodes of care may begin with a symptom diagnosis or an undifferentiated diagnosis and become a defined one. Each is a separate episode of care although there may be some kind of connection between the hypertension and the diabetes. xv

17 REFERENCES AND BIBLIOGRAPHY Further references to classifications are available at the WONCA International Classification Committee bibliography site at 1. I.M. Okkes, H.W. Becker, R. Bernstein, H. Lamberts. THE MARCH 2002 UPDATE OF THE ELECTRONIC VERSION OF ICPC-2. A step forward to the use of ICD-10 as a nomenclature and a terminology for ICPC-2. Family Practice, 19(5): Dr. Bob Bernstein, Dr. Gary Hollingworth, Dr. Gary Viner. Invited paper. Teaching about Electronic Information Systems in Primary Care, and the Science of Family Practice. Section of Teachers of Family Medicine Volume 10, Number 1, Spring Bernstein RM, Hollingworth GR, Viner G, Miller P. A Method of Assessment of Reliability of Coding Clinical terms to ICD-10 and ICPC Using ENCODE-FM, a Primary Care Controlled Clinical Terminology. Journal of Informatics in Primary Care, Jan Bernstein RM, Hollingworth GR, Viner GS, Goyal, S. A Proposed Data Model For Primary Care Electronic Medical Records. COACH (Canadian Organization for Advancement of Computers in Health Care), InFocus 2000, Vancouver, B.C., June 2000, Scientific Program Proceedings, pp Okkes, M Jamoulle, H Lamberts, and N Bentzen. ICPC-2-E: the electronic version of ICPC-2. Differences from the printed version and the consequences. Fam. Pract : Robert M. Bernstein, Gary R. Hollingworth, Gary S. Viner, Something Old, Something New, Something Borrowed: A Review Of Standardized Data Collection In Primary Care. Healthcare Information Management and Communications Canada Volume XIV, Number 5, December, 2000 pp (Winner of the HealthyWays prize for best scientific paper at COACH 1998.) 7. ICPC-2 International Classification of Primary care, second edition. Prepared by the International Classification Committee of WONCA. Oxford: Oxford University Press, Bernstein RM, Hollingworth GR, Viner G, Shearman J, Labelle C, Thomas R. Reliability Issues in Coding Encounters in Primary Care Using an ICPC/ICD-10-based Controlled Clinical Terminology. Journal of the American Medical Informatics Association, Symposium Supplement 1997, Vol 21: p 843 and D004493, Bernstein Robert M, PhD, MDCM, CCFP., Avoiding the Mismeasurement of Medicine, and Improving Care. Canadian Medical Association Journal, Dec. 15, Vol.157(11): Mullins HC, Scanland PM et. al. The Efficacy of SNOMED, Read Codes and UMLS in Coding Ambulatory Family Practice Clinical Records. J. Amer. Medical Informatics Assoc., Symposium Supplement Vol 20: Bernstein RM, Hollingworth GR and Viner G. Evaluation of Controlled Medical Terminologies for Use at the Point of Service in Primary Care Electronic Records. COACH Conference 21 Scientific Program Proceedings, pp 27-35, COACH: Suite 216, Mayfield Rd., Edmonton Alberta, Canada, T5P 4P4 12. Lamberts H and Hofmans-Okkes I.. Episode of care: A core concept in family practice. J. Fam. Pract. 1996;42: Bernstein RM, Viner G and Hollingworth GR. ENCODE-FM (Electronic Nomenclature and Classification Of Disorders and Encounters for Family Medicine): An ICPC-based Controlled xvi

18 Clinical Terminology for Use in Primary Care Electronic Records. in The Clinical Practice Management Network, Final Report, Feasibility Phase. pp ISBN# The College of Family Physicians of Canada, 2630 Skymark Ave., Mississauga, Ontario Canada, L4W 5A4, May, Implementation Study Advisory Group. Achieving Standardization in Diagnosis and Intervention Classification: Future Directions for Canada. Report to the Canadian Institute for Health Information Board. November Available from CIHI, 377 Dalhousie St., Ottawa, Canada, K1N 9N Viner G, Bernstein RM and Hollingworth GR. SIN-FM: (A Short Indexed Nomenclature of Family Medicine) Proceedings of the 18th Annual Symposium on Computer Applications In Medical Care, 18:1032, Lamberts H, Wood M, and Hofmans-Okkes I. eds. The International Classification of Primary Care in the European Community With a Multi-Language Layer. ed. Oxford University Press, Oxford Family/General Practice Data Standards Project: Process and Data Modelling Project Report. Publications Ontario 70 Grosvenor St, Toronto, November International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, ISBN # , World Health Organization, xvii

19 Section A General Généralités

20 A General Généralités 1 GENERAL 2 A29 r68.8 Symptom / Complaint / Sign / Reason for Encounter 3 A04 r53 * Weakness 4 A04 r53 Feeling Weak 5 A04 r53 Debility 6 A04 r53 Asthenia 7 A04 r53 * Fatigue 8 A04 r53 Tiredness 9 A04 r53 Feeling Tired 10 A04 r53 Feeling Exhausted 11 A04 r53 Physical Exhaustion 12 A04 r53 Worn Out 13 A04 r53 Feeling Run Down 14 A04 r53 Lethargy 15 A04 r53 Sluggish 16 A04 r53 Apathetic 17 A04 r53 Lassitude 9279 A04 r53 Feeling Lethargic A04 r53 Problem with Stamina / Endurance 18 A05 r53 * Malaise 19 A05 r53 Feeling Ill 20 A05 r53 Feeling Sick 21 A05 r53 Feeling Terrible 22 A05 r53 Feeling Unwell 23 A05 r53 Discomfort 24 A05 r53 Distress 25 A05 r53 General Deterioration (Excluding Psychological) 26 A05 r53 27 P05 r54 - Senescence 28 P05 r54 29 P05 r54 30 P05 r54 - Dwindles 31 P05 r P05 r54 32 A01 r52.9 * Pain 33 A01 r A11 r07.4 Chest Pain 35 A01 r52.9 Generalized Pain 36 A01 r A01 r A01 r52.0 Acute Pain 39 A01 r52.2 Chronic Pain 9829 A01 r A01 r A01 r Chronic Intractable Pain 41 A01 r Chronic Generalized Pain General Physical Deterioration Senility (Old Age) Senile Debility Adult Failure to Thrive FTT (Adult) Ache Whole Body Pain Multiple Aches and Pains Chronic Non-Cancer Pain CNCP Généralités Symptôme / plainte / signe / raison de la rencontre Faiblesse Se sentir faible Débilité Asthénie Fatigue État de fatigue Se sentir fatigué Se sentir épuisé Épuisement physique Se sentir usé Se sentir abattu Léthargie Se sentir lent Se sentir apathique Lassitude Se sentir léthargique Problème de résistance/d'endurance Malaise Se sentir mal Se sentir malade Se sentir mal en point Ne pas se sentir dans son assiette Incommodité, malaise Détresse Détérioration générale (à l'exclusion des aspects psychologiques) Détérioration physique générale Sénescence Sénilité (vieillesse) Débilité sénile Défaillances Absence de développement pondéro-statural normal chez les adultes RSP (chez les adultes) Douleur Douleur sourde, endolorissement Douleur thoracique Douleur généralisée Douleur dans tout le corps Douleurs et endolorissements multiples Douleur aiguë Douleur chronique Douleur chronique non-cancéreuse DCNC Douleur chronique irréductible Douleur chronique généralisée Page A1

21 A General Généralités 42 A02 r68.8 * Chills 43 A02 r68.8 Feeling Chilly 44 A02 r68.8 Feeling Cold 45 A02 r68.8 Rigors 46 A02 r68.8 Shivers 47 A03 r50.9 * Fever 48 A03 r50.9 Hyperthermia 49 A03 r50.9 Elevated Temperature 50 A03 r50.9 Pyrexia 51 A03 r50.9 Feeling Feverish 52 A03 r50.0 Fever with Chills 53 A03 r50.0 Fever with Rigors 54 A03 r50.9 Fever with Rash 55 A03 r50.1 Persistent Fever 56 A03 r Fever of Unknown Origin 57 A03 r50.1 Fever of Undetermined Origin 58 A03 r50.1 Pyrexia of Unknown Origin 59 A03 r50.1 PUO 60 A03 r50.1 FUO 9308 A29 r68.0 * Hypothermia (Endogenous) 61 A09 r61.9 * Sweating 62 A09 r61.9 Sweaty Skin 63 A09 r61.9 Diaphoresis 64 A09 r61.9 Perspiration 65 A09 r61.0 Sweaty Palms 66 A09 r61.0 Sweaty Feet 67 A09 r61.9 Hyperhidrosis 68 A09 r61.9 Excessive Sweating 69 A09 r61.9 Excessive Perspiration 70 A09 r61.1 Night Sweats 71 A29 r68.8 * Body Odor 72 A29 r68.8 Smelly Armpits 73 A29 r68.8 Smelly Feet 74 A06 r55 * Transient Loss of Consciousness 75 A06 r55 Transient Unconsciousness 76 A06 r55 Fainting 77 A06 r55 Syncope 78 A06 r55 Swoon 79 A06 r55 - Vasovagal Syncope 80 A06 r55 Blackouts 81 A06 r55 Collapse 82 A07 r40.0 * Altered Level of Consciousness 83 A07 r40.0 Somnolence 84 A07 r Drowsiness 85 A07 r40.1 Stupor 86 A07 r Clouded Consciousness 9818 A07 r40.0 Decreased LOC 87 A07 r Semicoma Frissons Se sentir frigorifié Se sentir refroidi frissons solennels Frissonnements Fièvre Hyperthermie Faire de la température Pyrexie Se sentir fiévreux Fièvre avec frissons Fièvre avec frissons solennels Fièvre avec érythème Fièvre persistante Fièvre d'origine inconnue Fièvre d'origine indéterminée Pyrexie d'origine inconnue POI FOI Hypothermie (endogène) Transpirer Peau sudorifique Transpiration profuse Sudorification Paumes moites Pieds qui transpirent Hyperhidrosis Transpiration excessive Sudorification excessive Sueurs nocturnes Odeur corporelle Aisselles odorantes Pied odorant Perte de conscience transitoire Inconscience transitoire Évanouissement Syncope Ictus Syncope vaso-vagale Perte de connaissance Affaissement Niveau de conscience modifié Somnolence Assoupissement Stupeur Obscurcissement de la conscience Diminution du niveau de conscience Coma vigile Page A2

22 A General Généralités 88 A07 r40.2 Coma 89 A07 r40.2 Unconsciousness 90 P20 r41.8 * Disturbed Cognition 91 P20 r41.8 Borderline Intellectual Functioning 92 P20 r41.8 Age Related Cognitive Decline 93 P20 r41.8 Memory Loss 94 P20 r41.8 Lack of Memory 95 P20 r41.8 Difficulty Remembering 96 P20 r41.8 Can't Remember 97 P20 r41.8 Forgetfulness 98 P20 r Temporary Memory Loss 99 P20 r Amnesia 100 P20 r41.1 Anterograde Amnesia 101 P20 r41.2 Retrograde Amnesia 102 P20 r41.8 Disturbed Concentration 103 P20 r Poor Concentration 104 P20 r Short Attention Span 105 P20 r41.0 Disorientation (Cognitive) 106 P20 r41.0 Disturbed Orientation 107 P20 r41.0 Confusion 108 P71 f05.9 Delirium 109 P71 f Delirium (without Dementia) 110 P71 f Delirium Superimposed on Dementia 111 P98 f23.3 Delusional State 9937 P98 f23.3 Delusions 9305 P98 f Paranoid Reaction 112 P29 r44.3 Hallucination 113 P29 r Auditory Hallucination 114 P29 r44.0 Hearing Voices 115 P29 r Visual Hallucination 9938 P20 r41.8 Flashbacks 116 A08 r68.8 * Mass 117 A08 r68.8 Localized Swelling 118 A08 r68.8 Lump 119 A08 r68.8 Tumor 120 A10 r58 * Bleeding 121 A10 r58 Hemorrhage 122 A10 r58 Bleeding (Unknown Site) 123 A10 r58 Hemorrhage (Unknown Site) 124 A10 r58 Bleeding (Multiple Sites) 125 A10 r58 Hemorrhage (Multiple Sites) 126 R29 r09.0 * Hypoxia 127 R29 r09.0 Asphyxia 128 R29 r09.2 * Respiratory Arrest 129 S08 r23.0 * Cyanosis 130 S08 r23.0 Central Cyanosis 131 S08 r23.0 Peripheral Cyanosis 132 W15 z31.9 * Infertility (Gender Unspecified) Coma Inconscience Cognition perturbée Fonctionnement intellectuel limite Déclin cognitif en rapport avec l'âge Perte de mémoire Absence de mémoire Du mal à se souvenir Incapable de se rappeler Tendance à l'oubli Perte de mémoire temporaire Amnésie Amnésie antérograde Amnésie rétrograde Problèmes de concentration Faible concentration Faible champ d'attention Désorientation (cognitive) Problèmes d'orientation Confusion Délire Délire (sans la démence) Délire surimposé sur la démence État délirant Délires Réaction paranoïde Hallucination Hallucination auditive Entendre des voix Hallucination visuelle Récurrences Masse Tuméfaction locale Grosseur Tumeur Saignement Hémorragie Saignement (site inconnu) Hémorragie (site inconnu) Saignement (sites multiples) Hémorragie (sites multiples) Hypoxie Asphyxie Arrêt respiratoire Cyanose Cyanose centrale Cyanose périphérique Infertilité (genre non précisé) Page A3

23 A General Généralités 133 W15 z31.9 Infertility of Couple 134 W15 z31.9 Subfertility of Couple 135 A97 z00.0 * No Disease 136 A97 z00.0 Absence of Disease 137 A97 z00.1 Well Child 138 A97 z00.3 Well Adolescent 139 A97 z00.0 Well Adult 140 A27 z71.1 Nonpathological Complaint / Problem 141 A27 z71.1 No Diagnosis 142 A99 z51.9 * Request for Referral(s) 143 A99 z51.9 Request for Referral to Non-Physician Provider 144 A99 z Request for Referral to Dietitian 145 A99 z Request for Referral to Psychologist 146 A99 z Request for Referral to Social Worker 147 A99 z Request for Referral to Physiotherapist 148 A99 z Request for Referral to Occupational Therapist 149 A99 z Request for Referral to Speech Therapist 150 A99 z Request for Referral to Massage Therapist 151 A99 z Request for Referral to Sex Therapist 152 A99 z Request for Referral to Chiropractor 153 A99 z Request for Referral to Osteopath 154 A99 z Request for Referral to Homeopath 155 A99 z Request for Referral to Naturopath 156 A99 z Request for Referral to Acupuncturist 157 A99 z51.9 Request for Referral to Specialized Clinic 9939 A99 z Request for Referral to Alcohol / Drug Assessment 158 A99 z51.9 Request for Referral to Physician 159 A99 z Request for Referral to Specialist 160 A99 z51.9 Request for Referral to Psychiatrist 161 A99 z71.0 * Request by Third Party on Behalf of Patient 162 A99 z71.2 * Request for Results of Test(s) 163 A99 z71.2 Request for Results of Test(s) from Other Provider 164 A97 z02.9 * Request for Administrative Procedure / Form 165 A97 z02.7 Request for Medical Certificate 166 A97 z02.0 Request for School Admission Form / Examination 167 A97 z02.8 Request for Camp Admission Form / Examination 168 A97 z02.5 Request for Sport Participation Form / Examination 169 A97 z02.1 Request for Pre-employment Form / Examination 170 A97 z02.8 Request for Immigration Form / Examination 171 A97 z02.6 Request for Insurance Form / Examination 172 A97 z02.4 Request for Driver's Form / Examination 9940 A99 z04.8 Request for Disability Application / Certificate Infertilité du couple Subfertilité du couple Pas de maladie Absence de maladie Enfant en bonne santé Adolescent en bonne santé Adulte en bonne santé Plainte / problème d'ordre non pathologique Absence de diagnostic Demande de transfert (s) Demande de transfert à un service non médical Demande de transfert à un diététicien Demande de transfert à un psychologue Demande de transfert à un travailleur social Demande de transfert à un physiothérapeute Demande de transfert à un thérapeute du travail Demande de transfert à un thérapeute de la parole Demande de transfert à un thérapeute par massage Demande de transfert à un thérapeute du sexe Demande de transfert à un chiropraticien Demande de transfert à un ostéopathe Demande de transfert à un homéopathe Demande de transfert à un naturopathe Demande de transfert à un acupuncteur Demande de transfert à une clinique spécialisée Demande d'orientation pour une évaluation de la dépendance à l'alcool/aux drogues Demande de transfert à un médecin Demande de transfert à un spécialiste Demande de transfert à un psychiatre Demande d'un tiers au nom d'un patient Demande des résultats d'un (de) test (s) Demande des résultats d'un (de) test (s) d'autres dispensateurs de services Demande de procédure / forme administrative Demande de certificat médical Demande de formulaire d'admission / d'examen à l'école Demande de formulaire d'admission / d'examen à un camp Demande de formulaire de participation / d'examen à des activités sportives Demande de formulaire d'admission / d'examen de pré-emploi Demande de formulaire / d'examen d'immigration Demande de formulaire / d'examen d'assurance Demande de formulaire / d'examen de permis de conduire Demande de formulaire/certificat de handicap Page A4