Development of LactaPedia: A lactation glossary for science and medicine

Abstract During the last decade, there have been several publications highlighting the need for consistent terminology in breastfeeding research. Standard terms and definitions are essential for the comparison and interpretation of scientific studies that, in turn, support evidence‐based education, consistency of health care, and breastfeeding policy. Inconsistent advice is commonly reported by mothers to contribute to early weaning. A standard language is the fundamental starting point required for the provision of consistent advice. LactaPedia (www.lactapedia.com) is a comprehensive lactation glossary of over 500 terms and definitions created during the development of LactaMap (www.lactamap.com), an online lactation care support system. This paper describes the development of LactaPedia, a website that is accessible free of charge to anyone with access to the Internet. Multiple methodological frameworks were incorporated in LactaPedia's development in order to meet the needs of a glossary to support both consistent health care and scientific research. The resulting LactaPedia methodology is a six‐stage process that was developed inductively and includes framework to guide vetting and extension of its content using public feedback via discussion forums. The discussion forums support ongoing usability and refinement of the glossary. The development of LactaPedia provides a fundamental first step towards improving breastfeeding outcomes that are currently well below World Health Organisation recommendations globally.


| INTRODUCTION AND BACKGROUND
Most women from high-income countries now choose to breastfeed, but sustained breastfeeding for the minimum durations recommended by the World Health Organisation (WHO) remains uncommon (Victora et al., 2016). Despite more than 80% of women and their newborns starting breastfeeding, the prevalence of breastfeeding at 12 months of age is lower than 20% in most high-income countries (Victora et al., 2016).
The significance of the lactating breast is particularly evident when its metabolic activity is considered because the energy output in breastmilk represents about 30% of maternal daily resting energy requirements. This is 5% more than that required by the brain (Boss & Hartmann, 2018a). It is therefore of particular concern that when compared with other major organs such as the heart, brain, liver, lungs, and kidneys, there is a lack of basic research and a lack of translation of that research into the evidence-based medical care of lactating mothers and their infants (Boss, Gardner, & Hartmann, 2018). To address this, a multidisciplinary team based at The University of Western Australia created LactaMap, a comprehensive online lactation care support system (Boss & Hartmann, 2019). During reviews of the literature required for development of LactaMap, it became clear that many lactation terms had differing definitions. In addition, inconsistent advice from health professionals is a common factor reported by mothers to have contributed to early weaning (Brodribb, 2012;Simmons, 2002). A standard language is the most fundamental starting point towards the provision of consistent advice (Boss & Hartmann, 2018b).
The call for consistent definitions in breastfeeding research is not new (Labbok, Belsey, & Coffin, 1997). The WHO published definitions for six infant feeding categories in an effort to achieve global consensus in 1991 (WHO, 1991). Within the last decade, there have been several publications that have highlighted the need for consistent definitions so that published work can be accurately interpreted, generalisations made (where appropriate) and studies compared (Labbok & Starling, 2012;Mannel, 2011;Noel-Weiss, Boersma, & Kujawa-Myles, 2012;Yourkavitch & Chetwynd, 2019). An example of the clinical significance of this absence of standard definitions is highlighted in a systematic review of observational studies to determine the impact of breast reduction surgery on breastfeeding (Kraut et al., 2017). This review concluded that breastfeeding was successful in 100% of women where full preservation of the column of parenchyma from the nipple areola complex to the chest wall was retained. However, the reviewers noted that, "most studies used a definition of breastfeeding success of less than a month." This definition of success is confusing, not what could be considered normal function and not a reasonable physiological measure of success (Boss et al., 2018). Such a concept of successful breastfeeding, when used by health professionals as advice for women who wish to breastfeed successfully after breast reduction surgery, is likely to encourage surgery prior to the completion of child bearing because it is interpreted to mean that it has no impact on breastfeeding. In fact, consideration should be given to deferring breast reduction plans until after breastfeeding is complete. LactaPedia was conceived as a means of overcoming such problems.
Review of the large body of literature required for LactaMap provided an opportunity to commence the development of a comprehensive glossary of lactation terminology. This would provide the standardisation required to support consistent education and training of health care professionals and their care for both mothers and infants.
A glossary is an alphabetical list of names or phrases (terms) together with text to explain their meanings (definitions) that relate to a particular subject. Navigation of a glossary is supported by a clear structure for the terminology model (Chute (Chute, Cohn, & Campbell, 1998). Frameworks exist that define standards for developing a terminology system or glossary (Chute et al., 1998;Velardi, Poler, & Tomás, 2006), but these do not define strategies suitable for all the principles required for development of a glossary for human lactation. The decision-making framework described in this paper started by following the ideas of the working group process approach used by the WHO for defining the six infant feeding categories (Labbok & Starling, 2012). The working group process approach involved defining the stages required to achieve the specified goal, in this case, breastfeeding definitions. These stages were then modified and expanded with the addition of principles from other relevant frameworks to create a methodology that met the needs of the lactation glossary.
The aim of this paper is to describe the methodology created for LactaPedia, a lactation glossary for science and medicine that is also a key component of LactaMap.

| METHODS
Consultation with the Human Research Ethics Office at The University of Western Australia confirmed that publication of methodology and process did not require an ethics review.
The methodology created for LactaPedia involved six stages.
Stage 1: Creation of a first draft glossary of lactation terms and definitionsLactation terms and definitions were collected during the literature reviews required for development of LactaMap. All terms relating to the field of human lactation and used in LactaMap were documented and defined. This was initially overseen by the LactaMap working group, which is described in the LactaMap Handbook available in the LactaMap website (Boss & Hartmann, 2019). This allowed the issue of variations in lactation terminology to be discussed and clarified.
Using principles from health terminology systems framework, a style guide was created to ensure consistency in lexical rules as well

Key messages
• Standard terms and definitions for human lactation are needed for comparison and interpretation of scientific studies and, in turn, to support consistency of healthcare and breastfeeding policy.
• Inconsistent advice is reported by mothers to contribute to early weaning.
• Standard terminology for human lactation is the first step required to support consistent advice.
• This paper describes the development of LactaPedia (www.lactapedia.com), a comprehensive online lactation glossary for science and medicine.
as the attributes of terms, preferred terms, definitions, and synonyms F I G U R E 1 LactaPedia style guide provided input regarding terms relating to donor human milk (Hartmann, 2019;Hartmann, Pang, Keil, Hartmann, & Simmer, 2007).
Consensus decision-making was used to reach agreement within the group. This allowed group members to have collective control over decisions as equals without hierarchy (Seeds for Change, 2010). In keeping with principles of consensus decision-making that require a clear process and shared understanding on the purpose of the project, a working document called the LactaPedia Handbook was created (Seeds for Change, 2010). The LactaPedia Handbook was developed inductively incorporating principles from existing methodology for terminology standards (Colquhoun et al., 2014;Velardi et al., 2006)  sion is a group decision-making strategy that makes good use of the knowledge of group members, allowing opinions to be argued (both for and against) and the evidence on which the opinion was based to be assessed (Bang & Frith, 2017).
Once consensus on content was reached, the draft glossary was deemed ready for peer review.
Stage 3: Editorial peer reviewEditorial peer review is a widely accepted element of the scientific process used to assess and improve the quality of publications (Jefferson, (Jefferson, Rudin, Brodney Folse, & Davidoff, 2007). Expert editorial peer reviewers were invited to evaluate the draft glossary developed by consensus of the LactaPedia working group in Stage 2. The approach used for the edito- Version control is a functional characteristic of glossary development important for retaining usability over time (Chute et al., 1998).
This allows updates and modifications to be dated and superseded entries to be marked but still be accessible. An innovative aspect of LactaPedia is that entries that become obsolete over time can be retained as archived definitions with the date of archiving recorded ( Figure 2).
The online format also allowed particular terms to be highlighted when the user enters the website. The "monthly featured definition" draws attention to a selected specific term and the "newest definition" features the most recent term to be added or amended.
Stage 6: Vetting and extension based on broader public feed-backDevelopment and launch of the LactaPedia website from Stage 5 supported sharing and extension of the glossary by inviting broader public feedback. The final stage involved development of a framework for processing this feedback for update, extension, and refinement of LactaPedia. These principles of update, extension, and refinement are important for ongoing usability and broader acceptance of glossary and terminology systems (Chute et al., 1998;Velardi et al., 2006). Outcomes for each suggestion are recorded in the review process spread sheet for each of the seven steps. Once complete, the relevant online content can be updated and a report published in the LactaPedia website.

| RESULTS
The methodology developed during the creation of LactaPedia addressed all the requirements considered necessary for a glossary for human lactation.
Multiple methodological frameworks were incorporated in order to meet both the practical needs of consistent health care and decision support as well as the research requirements to facilitate generalisation of findings and comparison of data (Table 1).
The resulting LactaPedia methodology was created inductively during the six-stage process and included principles from all of these frameworks ( Figure 4).

LactaPedia launched during World Breastfeeding Week in 2018
and contains more than 560 terms. It is available free of charge to anyone with access to the Internet. Feedback can be submitted by registered users via discussion forums connected to each term or via a general discussion forum accessible from the home page of the website. Including donor human milk and wet nursing in the definition of exclusive breastfeeding preclude the infant's mother from the important health outcomes associated with normal breastfeeding function, increasing the mother's risk for development of some diseases (Ip et al., 2007;Victora et al., 2016). Although donor human milk and wet nursing are helpful aids in the provision of breastmilk to infants, the preservation of a function that also retains the optimal health outcomes of the mother must also be considered when defining a standard to which a national health strategy is aimed. The resulting definition of exclusive breastfeeding included in the published ANBFS reflected this, "exclusive breastfeeding means that the infant receives breast milk (including mother's own expressed breast milk) and allows the infant to receive oral rehydration solution, drops, syrups (vitamins, minerals, and medicines), but nothing else." (COAG Health Council, 2019).
LactaPedia is currently available in one language (English). The LactaPedia software allows versions in other languages to be included, and work is underway to translate LactaPedia into Chinese. Translation into additional languages is a potential avenue for further research.
The LactaPedia website uses a web analytics service to track website traffic. This provides aggregated statistical information that allows website usage to be tracked. These data do not identify any T A B L E 1 Principles required for LactaPedia and frameworks used

Principle required Framework used
Effective project planning Glossary methodology (Velardi et al., 2006) Working group process approach (Labbok & Starling, 2012) Evidence-based guideline development methodology (National Institute for Health and Care Excellence, 2015; World Health Organisation, 2014) Effective decision-making Group consensus (Seeds for Change, 2010) Open discussion (Bang & Frith, 2017) Functional characteristics of lexicography Terminology standards (Chute et al., 1998;Colquhoun et al., 2014) Glossary methodology (Velardi et al., 2006) Objectivity Terminology standards (Chute et al., 1998;Colquhoun et al., 2014) Glossary methodology (Velardi et al., 2006) F I G U R E 4 LactaPedia methodology person individually and may also be used for further research as use of the website progresses.

| CONCLUSION
LactaPedia provides a fundamental first step towards improving breastfeeding outcomes that are less than WHO recommendations globally. The comprehensive, adaptable glossary provides clear, standard terms, and definitions that can be used to support policy as well as generalisation, comparison, and interpretation of research findings and improve consistency of healthcare.

CONFLICTS OF INTEREST
The authors declare that they have no conflicts of interest.