Collaborative development and maintenance of health terminologies Nicholas Hardiker, PhD, RN1, Tae Youn Kim, PhD, RN2, Claudia C Bartz, PhD, RN, FAAN3, Amy Coenen, PhD, RN, FAAN3, Kay Jansen, DNP, RN3 1 School of Nursing, Midwifery & Social Work, University of Salford, Manchester, UK 2 Betty Irene Moore School of Nursing, University of California Davis, Sacramento, CA 3 College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA Abstract The quest for a standardized terminology that can meet the varying needs of healthcare practice, and requirements for secondary use, is ongoing. The number of potential users and the number of potential uses for standardized terminologies make collaborative development, rather than the traditional de jure approach, an imperative, and there appears to be significant worldwide interest in this area. In this article we describe an initiative of the International Council of Nurses (ICN), ICNP C-Space (Collaborative Space), which utilized a social media platform to encourage and facilitate global collaborative development of its terminology, the International Classification for Nursing Practice (ICNP®). We report on several years of experience of managing the platform and provide valuable lessons on collaborative terminology development. Our experience suggests that web-based platforms such as ICNP C-Space certainly offer the promise of a broader, wider-reaching, and more inclusive community of contributors to the terminology development process. However, there are also potential limitations for which we provide practical recommendations. Introduction The ongoing quest for a standardized terminology that can meet the varying needs of practice and requirements for secondary use for nursing across the world began nearly half a century ago. To date, despite the large number of potential stakeholders, the predominant mode of development for the majority of terminologies appears to have been largely by committee. Scholars have argued the need to consult a wider range of experts, research groups and end users, and have described projects that have used a more collaborative approach to development through a range of tools. Examples include, iCAT, a collaborative authoring tool for the 11th revision of the International Classification of Diseases1, and the IHTSDO Workbench which allows collaborative editing and management of SNOMED CT2. In this article we describe an initiative of the International Council of Nurses (ICN), ICNP C-Space (Collaborative Space), which utilized a social media platform to encourage and facilitate collaborative development of its terminology, the International Classification for Nursing Practice (ICNP®)3. We draw on substantial experience of managing the platform to discuss advantages and limitations of collaborative terminology development as a contribution to global efforts in this space. We conclude with a set of recommendations that may facilitate or augment other related initiatives. Background The ICNP Programme dates back to 19894. It is now a major work stream within the ICN eHealth Programme5. The aim of the ICN eHealth Programme is to transform nursing and improve health through the visionary application of information and communication technology. ICN considers ICNP to be a major contributor to that transformation. ICNP is a standardized terminology that can support nursing practice and patient care worldwide. In order to achieve this, ICNP is built on a formal Web Ontology Language (OWL) foundation6. This formal foundation accommodates both interface properties (to facilitate use at the point of care) and reference properties (to facilitate secondary use of data and harmonization with other terminologies). In common with other contemporary standard healthcare terminologies, ICNP is a sophisticated resource that requires considerable input in terms of development and maintenance. The 2013 release of ICNP comprises 783 precoordinated diagnosis or outcome statements and 809 pre-coordinated intervention statements. It also contains many more elementary concepts that form the building blocks of the pre-coordinated statements. ICNP has been translated from English into 14 languages and there are five publicly-available derived catalogues (or subsets): • •

Partnering with Individuals and Families to Promote Adherence to Treatment Palliative Care for Dignified Dying

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• • •

Community Nursing (developed in collaboration with NHS Scotland) Nursing Sensitive Outcomes (developed in collaboration with the Canadian Nurses Association) Pediatric Pain Management (developed in collaboration with the Children’s National Medical Center, USA)

ICNP appears within the Unified Medical Language System7, it is recognized by the American Nurses Association as a terminology that supports nursing practice8, and it is a Related Classification within the World Health Organization Family of International Classifications9. There are harmonization agreements in place between ICN and the International Health Terminology Standards Development Organization10 (for SNOMED CT) and Sabacare11 (for the Clinical Care Classification). As a sophisticated global nursing terminology, ICNP development depends on consensus across a broad community of stakeholders. Previously this consensus had been sought, with variable success, using a range of different approaches, such as banks of reviewers and expert committees. However, these approaches were hampered by relatively cumbersome communication processes (such as in some cases the need to meet in person), which severely limited their potential reach and productivity. ICNP C-Space was an attempt by the ICN to provide, through contemporary web-based tools and techniques, a more inclusive and dynamic approach to terminology development (Figure 1).

Figure 1. ICNP C-Space home page with links to terminology resources, discussion boards and groups.

Methods ICNP C-Space was developed, using open source tools and resources, as a web-based platform that could support, through social media functionality, collaborative working around a number of terminology-related processes and artifacts. The resource was tailor-made through a process of incremental development with members of the ICN eHealth team and other external partners. The initiative ran from August 2008 to May 2013. We conducted a descriptive analysis of C-Space system functionalities and usage. A summary of the findings is presented in the following sections, along with lessons learned.

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Findings We identified three major C-Space system functionalities that contributed to the development and maintenance of ICNP. The functionalities included support for (a) website administration, (b) terminology enhancement and (c) terminology dissemination. a) Website administration: Groups, group membership and access rights It was expected that groups would have a terminology-related purpose; but it was also expected that the collection of groups would fulfill a range of different functions – discussing, reviewing, validating or disseminating. Group membership could be controlled in one of several ways: a) open to all i.e. public, b) closed i.e. by invitation only, or c) moderated i.e. a request to sign up to a group would be decided by the group manager(s). There were different levels of membership that afforded different access rights. Members could be group managers i.e. with full editing rights and in control of membership, editors i.e. with full editing rights, or members i.e. with rights to comment but not to edit content. Group content could either be made public or hidden at the managers’ discretion. Upon logging into ICNP C-Space, discussion board items appearing on the home page for an individual were filtered according to the group membership profile of that individual i.e. an individual would see all and only discussion board items relating to their own membership groups (along with global items). b) Terminology enhancement through focused group activities Twelve groups were established over the lifetime of the C-Space project with a focus on ICNP (concept review, mapping, catalogue development (see below), translation, implementation, and distribution), on the ICNP Consortium of Research and Development Centres and on the ICN Telenursing Network. The size of the groups ranged from 2 members to 36 members (this latter group generated the most postings – 13 main postings with 23 associated comments). In line with the aspirations for ICNP to be a unifying framework for the range of terminologies in use to support nursing across the world, ICNP C-Space provided a resource whereby users could review mappings between ICNP and another terminology and comment on those mappings in order to effect a more consensus-based validation (Figure 2). For example, one group was dedicated to the validation of 219 mappings between ICNP diagnoses and their equivalent in SNOMED CT (Figure 2). Three hundred and eighty-one individuals with a particular interest in nursing terminologies were invited to join the effort. Only 13 became members of the group; and only 3 of these commented on the mappings (30 comments in total). There was greater success, but again with a small number of people (n= 9), over a more structured mapping activity over a period of 5 months for a Community Data Set in Scotland. This activity resulted in a tangible product which was subsequently made available for download from ICNP C-Space.

Figure 2. Example of a mapping validation template to which registered group members could access candidate mappings, providing general or specific comments to advance the discussion.

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Terminology dissemination: Terminology-related functions and artifacts ICNP C-Space supported a range of terminology-related functions, including dissemination of eHealth resources and ICNP products. ICNP C-Space Groups, such as the Scottish Community Data Set group, facilitated collaboration around several of the terminology-related functions below through discussion, review and commenting. 1.

ICNP browser. A browser was developed that would allow easy navigation of different releases of ICNP and dynamic switching between a range of different spoken languages i.e. if a user was looking at a particular concept in English then the language could be changed without the user ‘losing their place’ (Figures 3 and 4). This multilingual functionality was essential in supporting translation work, as noted by the Norwegian translation team and others.

2.

ICNP catalogues. Subsets of ICNP, along with their organizational structures, documentation and metadata such as publication date, author(s) and copyright notices were marked up with XML for rendering as templates (Figure 5).

3.

ICNP distribution. ICNP C-Space allowed users to register with ICN and to receive, subject to a standard distribution agreement, a computable version of the latest ICNP release. This comprised a compressed file of tables (.csv files) covering, among other things: concepts and concept information, hierarchical relationships, inactivated concepts and replacements, and a changes log. Translation tables could also be selected by users and bundled with the release files. ICNP C-Space also allowed uncontrolled download of other formats including pdf files of translations and of hierarchies of pre-coordinated diagnostic and intervention concepts (i.e. without elemental concepts), and a representation of ICNP in the Classification Markup Language (ClaML), a distribution format adopted by the World Health Organization11.

Figure 3. ICNP C-Space browser showing information in English about a concept and links to parent and child concepts.

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Figure 4. ICNP C-Space browser showing the same information as the previous figure after dynamic switching to Norwegian.

Figure 5. Example of an ICNP Catalogue, marked up in XML and rendered as a template.

System usage For a very specialized resource, ICNP C-Space had impressive usage, at least in terms of access. During its 5 year lifespan, ICNP C-Space attracted over 2000 registered users from approximately 75 countries across the world; the number of casual visitors is likely to have been much higher. The resource was well-used, with around 60 unique visits and 800 page views per day (note that this latter figure is skewed by the fact that within the browser each ICNP concept was referenced by a unique URL – a casual look around the hierarchy would therefore elevate the number of page views). The resource had a high stickiness. The bounce rate was very low (less than half the usual rule-of-thumb average of 50%) with users spending an impressive average amount of time on the site at nearly 10 minutes. The ICNP Browser was the greatest user attraction with most activity on ICNP C-Space related to its access and use. A secondary attraction was the download of ICNP itself in a range of different formats. With visitors coming from so many different countries it is likely that the multilingual nature, both of ICNP and, to some extent, of the website itself, was a facilitator. Discussion and Conclusion Several years of experience of managing the ICNP C-Space platform have provided valuable lessons on collaborative terminology development. The relatively large number of users and the high level of usage would suggest that there is significant interest in this area of work. Over-and-above the collaborative activity itself, resources that have real value to users, such as the ICNP Browser or downloads of ICNP in a range of formats, appear to have provided important hooks and enhanced stickiness. One possible barrier might have been the need to register before being granted permission to contribute. However, sign-up to ICNP C-Space was simple and certainly no more onerous than other very widely-used social media platforms. And for the large number of registered users, each of whom had already overcome any sign-up burden, the level of activity was very low, even for fairly well-prescribed tasks.

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All group activity on ICNP C-Space was intended to be asynchronous, taking the form of shared discussion boards or commenting on specific topics or tasks. The fact that users used the site at different times may have been a barrier to activity. Or it may have been that contributing itself was an issue – discussion postings and comments were clearly attributed which may have left users feeling exposed to potentially large numbers of viewers. Our experience from a number of initiatives would suggest that a small group of identifiable people working closely together on a specific task as near to real-time as possible is a more productive approach than a large number of anonymous people working in isolation on general tasks asynchronously. Possibly due to the nature of the activities or due to the characteristics of its users, ICNP C-Space was most productively-situated as an adjunct to other approaches such a telephone or web conferences rather than as a stand-alone vehicle for crowdsourcing. The ICNP Browser and downloads may have attracted users to ICNP C-Space and enhanced its ‘stickiness’, but these appeared to do little to stimulate group activity around collaborative working. Crowdsourcing is now a wellestablished concept, with a wide range of initiatives leveraging the often modest contributions of large communities of users to fulfill a range of services13. The original ambition for C-Space was similarly to draw on a large number of interested and active contributors (i.e. maximizing the ‘number of eyes’ on an issue); however this was not realized. Our experience suggests that web-based platforms such as ICNP C-Space certainly offer the promise of a broader, wider-reaching, and more inclusive community of contributors to the terminology development process. We would recommend that other similar initiatives, within and outside nursing, endeavor to: • • • • •

Identify individuals or groups who can commit to active collaboration and meaningful contribution Be clear about the task in hand and communicate that effectively to potential participants Form a trusted community where appropriate risk-taking (‘sticking ones neck out’) is embraced Use additional tools and techniques to enhance communication, maximizing opportunities for synchronous working Stay small, stay focused and, perhaps obviously but most importantly, work together.

Acknowledgments The authors would like to acknowledge the contribution over several years of the late Derek Hoy, developer of ICNP C-Space, to the ICN eHealth Programme. References. 1. 2. 3. 4.

5. 6. 7.

8. 9. 10. 11. 12. 13.

Tudorache T, Falconer S, Nyulas C, Storey M, Üstün TB, Musen MA. Supporting the Collaborative Authoring of ICD-11 with WebProtégé. AMIA Annu Symp Proc. 2010; 2010: 802–806 http://www.ihtsdo.org/develop/tooling/ http://www.icn.ch/pillarsprograms/international-classification-for-nursing-practice-icnpr/ Clark, J. (1998). The International Classification for Nursing Practice Project. Online Journal of Issues in Nursing. Accessed February 26, 2013 from www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol3 1998/No2Sept1998/TheInternationalClassificationForNursingPracticeProject.aspx. http://www.icn.ch/pillarsprograms/ehealth/ http://www.w3.org/TR/owl-features/ National Library of Medicine (2012). UMLS® International Classification for Nursing Practice (ICNP) Source Information. Bethesda, MD: NLM. Accessed February 26, 2013 from http://www.nlm.nih.gov/research/umls/sourcereleasedocs/current/ICNP/ http://nursingworld.org/npii/terminologies.htm http://www.who.int/classifications/icd/adaptations/icnp/en/index.html http://www.ihtsdo.org/ http://www.sabacare.com/ http://apps.who.int/classifications/apps/icd/ClassificationDownloadNR/ClaMLFormat.htm Turner AM, Kirchhoff K, Capurro D. Using crowdsourcing technology for testing multilingual public health promotion materials. J Med Internet Res. 2012; 14(3):e79.

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Collaborative development and maintenance of health terminologies.

The quest for a standardized terminology that can meet the varying needs of healthcare practice, and requirements for secondary use, is ongoing. The n...
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