This month’s feature is an interview with IAHPC Board Member and former Chair Dr. Roberto Wenk on the topic of Pallipedia, the Internet’s free, online dictionary devoted to palliative care. Built by the IAHPC, Pallipedia lists and defines words and phrases related to the field of palliative care, written to be clearly understood by anyone. Dr. Wenk was instrumental in launching the site; he continues to maintain and expand the listings.
1. How did Pallipedia come about?
Pallipedia resulted from a strategic plan carried early in 2008 by the IAHPC Board of Directors, who recommended developing and implementing a palliative care specialized online dictionary to improve palliative care knowledge and resources for the global community. The idea was to create an easily accessible source of updated palliative care terms and definitions that covers all palliative care topics, professions, and fields.
We are aware that most of the information is available on the Internet, but it is scattered among different books, journals, and online resources, such as academic institutions that offer glossaries. The drawback for users is that they often have to do a separate, new search for each term; sometimes, their time or their access is limited. Also, not all sources the people consult meet appropriate quality standards. Pallipedia offers only definitions based on articles in peer-reviewed journals, chapters in textbooks, or ones that result from sound consensus-based processes or from the websites of reputable institutions.
Initial development was funded by a grant from the US Cancer Pain Relief Committee. Ongoing development and maintenance is funded by Fundación FEMEBA [Federación Médica de la Provincia de Buenos Aires], Argentina.
2. What was the original intention?
The initial intention was to develop a resource based on the Wiki concept, searchable by palliative care terms, arranged alphabetically. We sought to create a structure that responds directly to the needs of readers and users. They, in turn, could collaborate by suggesting terms and definitions to the website, following guidelines and criteria that we developed on the content and references. The suggested definitions and terms are subjected to an internal editing of content before being published.
3. Did the parameters of the dictionary change over time?
One change we made a few months after starting was to offer expanded definitions for the same term; this provides the reader with the evolution of available knowledge on specific topics. For example, our listing for pain has widened to include the fact that people who cannot verbally communicate their pain does not preclude the possibility that pain is present, or negate the responsibility of health care providers to treat it. The definition of abstinence counsels readers not to confuse it with abstinence syndrome, an older term for withdrawal syndrome.
Another recent change was the decision to eliminate all figures and graphics, so as to respect existing copyrights over such material. We currently offer hyperlinks to websites and other locations where online graphs, tables, and other graphics that we consider important are located, for users who may be interested in additional information.
4. Who contributes to Pallipedia?
Anyone can submit a definition! In the initial stages of Pallipedia we received many submissions from [IAHPC co-founder and current Book Editor] Roger Woodruff, and [Pallium India founder and Chairman] M.R. Rajagopal, as well as other contributors. As time goes on and the number of definitions increases, however, new terms become increasingly scarce.
5. Who is accessing Pallipedia?
Between 14 December 2017 and 12 January 2018, the site received 1,236 visits. The 10 countries where 67.32% of the visits originated were, in decreasing order: USA (22.73%), India, UK, Malaysia, Australia, Canada, Singapore, Philippines, Pakistan, and Nigeria (1.38%).
The number of Pallipedia visitors is progressively increasing. It currently averages 40 to 70 visits daily.
6. How many terms are now being added?
Our goal is to add or update five to 10 terms per week; adding and updating terms is actually a slow and complex process. Initially it was simple and fast because everything was new, but as the number of terms and definitions increased it became necessary to search in articles or books to identify new or updated terms or useful concepts to add. Merging variations on already edited and verified definitions is also time-consuming.
We are currently beginning to expand the focus to add current clinical concepts that have an impact on the care process. For instance, we recently added ‘palliative care syringe,’ a new term used to make clear which specific elements of palliative care practice are associated with early integration into the oncology care regimen that improves quality of life (QOL), mood, and the delivery of end-of-life care for patients with advanced cancer. Another example is the inclusion of ‘intimate partner violence.’
7. How do you see Pallipedia evolving in the future?
The future is promising; the pace of adding terms has slowed but the depth and quality of the dictionary has increased. Also, visits are increasing over time and, perhaps more importantly, some search engines are now positioning some Pallipedia definitions at or near the top of results pages.
What we know for sure is that Pallipedia will continue!
Pallipedia is a registered trademark of the IAHPC. To ensure the highest possible quality for Pallipedia, IAHPC uses reliable sources of information, such as AIDSinfo, Bandolier, CIMS Drug Information System, Cochrane, DeCS, the International Association for the Study of Pain, Medscape Drugs & Diseases, National Cancer Institute, Palliative Care Australia, University of Wisconsin Pain & Policy Studies Group, and World Health Organization, among others.