Draft

Introduction

There has recently been a call from some members for the addition of “Patient-friendly terms” to SNOMED CT to support consumer health applications.  This brief is a summary of discussions held by the Editorial Advisory Group as well as comments from the Content Managers Advisory Group related the benefits and detriments to the inclusion of this type of description to the International release and the position that SNOMED International will take regarding requests to add this type of content.

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One of the major issues surrounding the use of PFTs is the ability to determine the semantic equivalence with standardized clinical terminology.  Patient-friendly terms generally fall into four categories:

• exact match; the lay term PFT has exact correspondence to a term in the standard resource and both have the same meaning;

• synonymy; the lay term PFT does not exist in the standard resource, but corresponds to a technical term that denotes the same concept;

• hyponymy; the lay term PFT is considered as term of inclusion of one or more concepts in the standard resource (AKA narrower than)

• hypernymy; the lay term PFT includes in its meaning one or more terms in the standard resource (AKA Broader than)

When PFTs are mapped to standard terminologies, there is often a 1:N relationship, where a single PFT is mapped to multiple terms in the reference terminology.  While from a consumer point of view, this provides some benefit, when the PFT is used as the source term for analysis, the actual intended meaning of the term is not always apparent. As stated in the semantic net analysis “…patients often create semantic ambiguities in using lay terms for expressing clinical concepts, in fact they use somesome terms interchangeably as synonyms (as in the case of headache and migraine) making errors.”

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• PFTs may be ambiguous, and while duplicate descriptions are allowed in SNOMED CT, the presence of these terms within the same hierarchy makes it difficult to determine which concept the PFT actually refers to

• The potential number of PFTs for a given concept is unbounded.  Consumer terminology is often regionally and lexically idiosyncratic.  The maintenance of idiosyncratic or colloquial terms would be unmanageable without clear criteria for acceptance.

• Consumer level terms are often nationally, regionally or culturally context sensitive.  The same term might mean substantially different things in these different contexts.  Trivial examples include the term “tomato sauce”, which in the UK means what the US calls “catsup”; or “Pavement”, which means the road surface in the US and Canada and the sidewalk in the UK.  This context sensitivity provides many opportunities for erroneous usage of clinical terms.

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Underlying assumptions related to the proposed SNOMED International position on PFTs in the International release

• Patient-friendly terms would only be included in the International release as US or GB English, thus not supporting International consumer terminology
• The potential set of patient-friendly terms is relatively unbounded and may include abbreviations and acronyms that would be in conflict with SNOMED Ct editorial policy
• The SNOMED CT extension and refset mechanisms were originally created to support multi-lingual and context dependent dialect use cases for linkage to the International content.
• The International release of SNOMED T does not currently have a way of assigning a description as "equivalent to" or "broader than" the concept that it is related to

Proposed position on addition of “patient-friendly terms” to the International release of SNOMED CT

While SNOMED International strongly encourages NRCs to take the initiative in adding and extension managers to add Patient-friendly vocabulary to their national extensions. The International Release of SNOMED CT will accept this type of content according to the following guidelines:

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Terms will only be added when it can be determined by SNOMED International editorial staff  that they are semantically equivalent to the concept to which they are associated (i.e. 1:1 equivalence match)

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Only one PFT will be added to a concept

"patient-friendly" descriptions only when they coincidentally adhere to the criteria for addition of descriptions as described in Section 7.2 of the SNOMED CT Editorial Guide.

SNOMED International guidance for the use of Patient-friendly terminology in SNOMED CT extensions and refsets.

Note: This area needs to be fleshed out with the specific mechanisms in place to support the extensions; e.g. refsets, modules

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References

1. Hong Y, Ehlers K, Gillis R, Patrick T, Zhang J. A usability study of patient-friendly terminology in an EMR system. Stud Health Technol Inform. 2010;160:136-40.

2. Medical terminologies for patients, Elena Cardillo, Institute of Informatics and Telematics UOS Rende (CS), National Research Council, Consenza, Itally (http://www.semantichealthnet.eu/SemanticHealthNet/assets/File/SHN%20288408%20D3_3%20rev2%20Annex%201_Cardillo_SHN_D3_3_final.pdf) (accessed March 9, 2017

3. Bridging the Terminology Gap between Health Care Professionals and Patients with the Consumer Health Terminology (CHT), Philip D. Marshall MD, MPH, WellMed, Inc., Oregon Health Sciences University, Portland, Oregon; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2244063/pdf/procamiasymp00003-1117.pdf (accessed March 9, 2017)

4. Italian Consumer-oriented Medical Vocabulary (ICMV); https://ehealth.fbk.eu/resources/italian-consumer-oriented-medical-vocabulary-icmv (accessed March 9, 2017)

5. Consumer Health Vocabulary Initiative; http://consumerhealthvocab.chpc.utah.edu/CHVwiki/ (accessed March 9, 2017)