1. Meaningful records and meaningless boxes David Markwell Principal Consultant The Clinical Information Consultancy Ltd www.clininfo.co.uk HL7 UK Conference 2007

2. RIM Meaningless boxes? EDIFACT HL7v2 Z-segs EN13606 Read Codes ICD10 SNOMED CDA Coad Yourden RDBS ASTM UML AbcAbc  ─ └  ↔↔ 

3. AbcAbc  ─ └ Meaningless boxes?  ↔↔  Terminologies & classifications Communication specifications Applications & data storage Data capture and User interfaces Information models archetypes and templates

4. Meaningful records  For health record information to be reusable it must be processable in a meaningful way by a variety of different applications  How should the ‘meaningless boxes’ be used to meet this objective?

5. Requirements for meaningful health records  Requirements for meaningful processing of health record information come from a variety of different sources including: –Clinicians involved in direct patient care –Epidemiologists and researchers –Service managers at local and national levels  To meet these varied requirements the health record content must be represented in ways that encompass multiple perspectives

6. Different perspectives on health information  Clinical discipline and specialty views Different ways of working and priorities affect Degree of detail that can be readily captured Balance between data capture styles Record content that needs to be displayed for review Opportunities for effective use of decisions support Reporting requirements  Specific process views For example Requesting and reporting investigations Prescribing, dispensing and administration of medication Managing immunisation programs Referrals and appointment bookings

7. Integrating different perspectives  Specific perspectives are important –Specialty specific views support clinical users –Process specific views enable efficient and effective delivery of services  Integration of multiple perspectives is important –The same information is often collected by, and relevant to, many specialties and processes –Consistent representation of information is essential to enable reuse of relevant information –Requirements for consistency are often ignored when focusing attention on one process or specialty

8. Process and meaningful health record views (slides 8-13 were hidden and not used in HL7UK Conference presentation)

9. Reusable, meaningful health records in the context of  The delivery of health care to a person or a population consists of various processes –Each process has specific requirements for data collection and communication For example, the process of providing routine immunisations  Health records contain information collected during various processes –The information collected is often relevant to and related with multiple care delivery processes For example, information about an immunisation may be relevant determining the differential diagnosis for a subsequent febrile illness

10. Processes based requirements  Data requirements –Provide each party with sufficient information to fulfil their role –Track progress to confirm consistent completion –Identify exceptions  Data capture and communication requirements –Simplify capture of data essential to the process –Specify the requirements for communications that are essential to the process  Typical end result –Forms, information structures and messages directly matching specific requirements with minimal requirements for data transformation –Not ideal if the information needs to be reused by other related processes

11. An example of a process: Routine immunisation  Call person to immunisation clinic –Record call and booked appointment  Take and review history for contra-indications  Decide on immunisation required  Explain recommendation and obtain consent –Record history, immunisation decision and consent  Administer the appropriate quantity of the vaccine by the appropriate route –Record details of the substance, quantity, batch number and route of administration  Arrange follow up for next step in course –Submit required information to support claims and/or update central/shared immunisation registers

12. Health record requirements  Information requirements –Provide appropriate accurate information when and where it is needed To enable delivery of evidence-based personal care to individuals To enable more effective delivery of care to the wider population –Allow incremental growth of ‘meaningful information’  Capture and communication requirements –Facilitate capture of information from which the meaning can be determined without detailed knowledge of the specific data collection process –Represent communications in ways that conserve ‘meaningful information’ derived from different processes and applications

13. An example of a meaningful health record view: Immunisation information Questions a meaningful health record should be able to answer:  What immunisations has this person had – and when?  Has this person had an adverse reaction to a past immunisation?  What immunisations are due or incomplete?  Is this person up to date for immunisation against disease X?  What percentage of a population completed their immunisations?  Who received immunisations from a suspected faulty batch?  Which members of the population are at risk from a current outbreak of a disease due to out of date immunisation?  Has this GP/PCT hit a target for coverage of the population?  Have particular immunisations, routes or regimes been associated with greater risks of side effects?  … and many more …

14. Meaningful electronic health records  A meaningful health record makes it possible to answer relevant questions accurately and efficiently

15. Relevant questions that a health record may need to answer  It is impossible to enumerate every potentially relevant question (the number is huge and growing)  It is possible to identify general types of questions For example … –What information is known about this person? –Does this person have a particular item or collection of items of information in their record? –How many incidents of a specified type have occurred to members of a population (or selected subpopulation)? –Which members of a population have a particular item of collection of items of information in their record?  Each type of question can be refined –different selection criteria –different ways in which to represent the answers

16. Illustration of a differences between ‘process view’ & ‘meaningful record view’  Are the following questions the same? –Did this person complete the routine immunisation process against disease X? –Is this person’s appropriately immunised against disease X?  Not really –One is ‘process’ question the other is a ‘meaning’ question  The answers are related but may differ –Evidence of the effectiveness of the vaccine given may change so the cover is no longer effective –Immunisation may be done and recorded in other situations For example, an A&E department or travel clinic An immunisation in any situation is still an immunisation

17. Requirements for accuracy and efficiency  Accuracy – includes –Precision Reducing the risk of false positives –Completeness Reducing the risk of false negatives  Efficiency – includes –Ease Time and expertise needed to pose questions –Frequency How often does a question need to be answered –Rapidity How quickly is an answer needed

18. Retrieval Display Capture Reporting and analysis Stored EHR Content Communications Stored Content Other EHR systems A simplified overview of health record information flows Decision Support What functions determine the requirements for processable health record content?

19. Retrieval as a determiner of data content and representation  A meaningful health record makes it possible to answer relevant questions accurately and efficiently  In order to answer relevant questions information must be selectively retrieved so it can be displayed or analysed  Therefore retrieval requirements are clearly an important determiner of requirements for data content and representation

20. Display as a determiner of data content and representation  Display requirements can be phrased as questions For example –General: What information is held about this person? –Specific: What allergies does this patient have? –Population: Which patients require follow up?  Display is one of the underlying requirements for selective retrieval Display retrieval requires –High performance - rapid responses –Clear rendering and layout of responses –Integration with data capture in the user interface

21. Data capture as a determiner of data content and representation  Effective data capture is vitally important –It needs to be easy in terms both of the time and effort require; and the way it fits in with working practices  Data capture is only worthwhile if the data captured can be usefully reused Therefore –Data capture does not define the requirements for data content and representation –Data capture needs to be designed to meet requirements for subsequent retrieval

22. Alternative modes of data entry are good servants but poor masters Approaches to data entry need to be tailored to the way different groups of clinicians work and think A common approach to the user interface But not one size fits all As the following examples illustrate the same information may be captured in different ways How does this affect content and representation?

23. Different ways to capture the same meaning (1) Simple check-boxes Suggests a Model of Use consisting of codes assigned values of “true”, “false” or “unknown”.

24. Different ways to capture the same meaning (2) Selection of terms Suggests a Model of Use consisting of individual coded statements with associated text

25. Different ways to capture the same meaning (3) Free text with natural language processing Suggests a Model of Use consisting of text tagged with relevant codes.

26. Answering questions based on data capture representations If information is represented according to the way it is captured it may be difficult to answer simple questions Does the patient have a family history of diabetes mellitus? … expands to … Do they have a family history form in which ‘diabetes mellitus’ is checked as present? Do they have a family history record in which the code for ‘FH diabetes mellitus’ is present? Do they have text that is tagged with the code for ‘diabetes mellitus’ in the context of a section of text tagged as ‘family history’?... there are also other data capture representations to consider

27. Data capture and meaningful records  Reuse of information captured in different ways should be supported by enabling transformation from specific data capture forms to a common ‘model of meaning’  For example –The results of the preceding data capture illustrations should be transformed to a common model of meaning that allows questions about family history of asthma, diabetes mellitus and heart disease to be answered consistently  The model of meaning should –Encapsulate essential contextual information i.e. family history, absence/presence –Represent appropriate and available detail –Allow general questions to be reliably answered by records that may contain more detailed representations e.g. “family history or type 2 diabetes mellitus”

28. Communication as a determiner of data content and representation  Communication requires the sending system to selectively retrieve the information to be sent  There is no point in communicating information that is not retrievable on the recipient system –Reuse of communicated information requires selective retrieval  Therefore, communication requirements are secondary to requirements for reuse and retrieval  Possible exception: A communication specification may be the only source of requirements for data that is captured specifically to populate a message, has a specific role in the receiving system and is not reused for any other purposes.

29. Communication of meaningful records  Information with the same meaning may be represented differently in different systems and in different messages –To meet different use cases in term of levels of detail –To benefit from proprietary optimisations –To utilise different communication standards appropriate to specific requirements  Communications of health record information should be based on (or transformable to) a common model of meaning –A common model of meaning offers a shared view allowing consistent retrieval of data irrespective of its point of origin

30. Meaningful electronic health records  A meaningful health record makes it possible to answer relevant questions accurately and efficiently  The primary drivers for the data content and representation of health records are –The questions that are deemed to be relevant –The accuracy and efficiency necessary to adequately address those questions

31. Retrieval Requirements Display Requirements Capture Requirements Reporting and analysis Requirements EHR Content Requirements Communications Requirements Content Requirements Other EHR systems Requirements arise from the questions that need to be answered Decision Support Requirements Retrieval Requirements ‘ Posing questions ’

32. Meaningful records and models of meaning  For health record information to be reusable it must be processable in a meaningful way  This requires a model that enables questions to be posed and answered consistently irrespective of the method of data capture –This can be considered as ‘model of meaning’  If processable information to be shared between different systems and applications with out loss of processable meaning –This requires a ‘common model of the meaning’

33. Requirements for a common model of meaning  A model of meaning into which data captured in different ways can be transformed is required to support –Consistent processing within an application that collects similar data in different ways ‘Semantic operability’  A common model of meaning in which data from different application can be shared is required to support –Communications between applications which employ different internal models of meaning ‘Semantic interoperability’

34. What should a common model of meaning look like  A virtual view of information that can be used as a point of reference for questions  Ensure that similar information can be retrieved in similar ways –Avoid special cases in which particular information is only accessible using particular queries This does not preclude specialised views but it does require that the information is also accessible using the general view –Avoid multiple representations of similar information based on process or level of detail The model of meaning should tolerate different levels of details within the common structure

35. Templates and other constraints  Templates and archetypes act as useful constraints to information models that can assist many aspects of health record system specification Including –Design of data capture screens and protocols, –Design and implementation of health record repositories, –Message design and message instance validation.  Like other information models these structures should be bound to terminologies to make them meaningful –Structural constraints should not be assumed to encapsulate meaning –Instances of information that conform to structural constrants should be reliably transformed to a common model of meaning to enable comparability with other representations of similar information

36. Starting point for a common model of meaning  The HL7 DSTU ‘Guide to the use of SNOMED CT with HL7v3’ (TermInfo) is a starting point from which to develop a common model or meaning –It discusses many general issues encountered at the boundary between information models and terminology models –It identifies specific issues at the boundary between ‘HL7 Clinical Statements’ and ‘SNOMED CT Terms’ and specifies rules and guidance for dealing with many of these issues. –It provides a point of reference – rather than a finished work – since it remains subject to evolutionary improvement  Similar work is needed in respect of –Other information models (e.g. EN13606 and OpenEHR) –Any additional terminologies used in health records

37. Reusable meaningful records depend on rules for assembling meaningless boxes into a consistent inclusive ‘model of meaning’  ↔↔   ─ └ AbcAbc

38. Progress  In the last year … –Two relevant standards were passed in DSTU ballots HL7 Clinical Statements HL7 Guide to Use of SNOMED CT in HL7v3 –Ownership of SNOMED CT passed to the IHTSDO International Health Terminology Standards Development Organisation  Recently … –An IHTSDO project to specify SNOMED CT Machine Readable Concept Model constraints was launched –Work started on approaches to binding SNOMED CT to EN13606 archetypes and openEHR templates  There are stronger signs of practical convergence between EHR related standards today than in the past –… but much remains to be done

39. Conclusions  Reusable heath records need to support selective retrieval to answer relevant questions, accurately and efficiently  Selective retrieval requirements are the primary driver for specification of the content of the EHR  A common model of meaning is essential to enable effective retrieval  Specifications concerned with capture and communication of health record information need to enable transformation to an agreed common model of meaning

40. Meaningful records from meaningless boxes  Thank you for your attention –Any questions? –Contact details www.clininfo.co.uk www.cliniclue.com