bims-librar Biomed News
on Biomedical librarianship
Issue of 2020–02–16
seventeen papers selected by
Thomas Krichel, Open Library Society
  1. Health information seeking behaviour: a concept analysis.
  2. Mixed-methods library evaluation integrating the patron, library, and external perspectives: The case of Namibia regional libraries.
  3. TeSS: a platform for discovering life science training opportunities.
  4. Information Management in Healthcare and Environment: Towards an Automatic System for Fake News Detection.
  5. Social media is a source of health-related misinformation.
  6. Google Medical Update: Why Is the Search Engine Decreasing Visibility of Health and Medical Information Websites?
  7. Search engines, cognitive biases and the man-computer interaction: a theoretical framework for empirical researches about cognitive biases in online search on health-related topics.
  8. An agent-based model about the effects of fake news on a norovirus outbreak.
  9. Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists.
  10. Understanding the preferences of Australian men for accessing health information.
  11. Quality of information about oral cancer in Brazilian Portuguese available on Google, Youtube, and Instagram.
  12. YouTube as a source of information about orthodontic clear aligners.
  13. Health Professionals' Perception Related to Communication Technologies for Access to Information about Crack.
  14. The contributor roles for randomized controlled trials and the proposal for a novel CRediT-RCT.
  15. A Weekly, Evidence-Based Health Letter for Caregivers (90Second Caregiver): Usability Study.
  16. Qualitative evaluation of paediatric surgical otolaryngology content on YouTube.
  17. Evaluating the perceptions of the transgender and non-binary communities of pelvic radiotherapy side effect information booklets.
  1. Health Info Libr J. 2020 Feb 12.
    Health information seeking behaviour: a concept analysis.
    Margaret S Zimmerman, George Shaw.
       BACKGROUND: In 2007, Lambert and Loiselle conducted an extensive concept analysis of the term health information seeking behaviour (HISB) to examine the concept's level of maturity and critically analyse its characteristics. Since their groundbreaking work, HISB has evolved with the proliferation of ICTs. The Internet is now a common and often preferred medium for the pursuit of health information.
    OBJECTIVES: The previous analysis spanned 42 years of literature; this article describes an analysis of the last 10 years of literature on HISB and how online seeking has caused the concept to evolve in the literature.
    METHODS: This study used the concept analysis methodology employed by Lambert and Loiselle in the original analysis. It also included a systematic search conducted in five databases to identify studies from 2007 to 2017, using similar inclusion criteria from the original study.
    RESULTS: Of the more than 500 articles retrieved, 85 journal articles met the inclusion criteria. Consistent with the original work, articles that included outcomes were identified as either behavioural or cognitive.
    CONCLUSION: Most of the attention of the works studied focused on individuals and their information source preferences. This HISB analysis can be incorporated with studies to understand how various communities seek information in online versus non-online contexts.
    Keywords:  Internet; concept analysis; consumer health information; information and communication technologies (ICTs); information seeking behaviour; review, literature
    DOI:  https://doi.org/10.1111/hir.12287
  2. Eval Program Plann. 2020 Jan 27. pii: S0149-7189(19)30146-6. [Epub ahead of print]79 101782
    Mixed-methods library evaluation integrating the patron, library, and external perspectives: The case of Namibia regional libraries.
    Moonjung Yim, Michelle Fellows, Chris Coward.
      The article presents a mixed-methods evaluation of regional libraries in Namibia, which incorporates three perspectives: the patron perspective (library users), the library perspective (library staff, management, and related officials), and the external perspective (including evaluators and monitoring data). Seven data collection methods were used: patron surveys, patron panel studies, focus group discussions, key informant and staff interviews, secondary data analysis, media analysis, and observations. The goal of the evaluation was to assess library performance for both formative and summative purposes by addressing evaluation questions on areas such as library services, use, and operations. Building upon the literature review of how mixed-methods approaches can contribute to library evaluation, the aim of this article is to show how a mixed-methods evaluation can be designed to examine multi-faceted library performance and to illustrate how the evaluation design allows information complementarity and can be utilized to present diverse viewpoints of the above three perspectives. The evaluation design, analysis process, and lessons learned from this study may be useful to evaluators engaged in evaluation of public services or programs (including public libraries) that examine multiple aspects of service performance and involve a variety of stakeholders.
    Keywords:  Mixed-methods approach; Performance evaluation; Public library
    DOI:  https://doi.org/10.1016/j.evalprogplan.2020.101782
  3. Bioinformatics. 2020 Feb 11. pii: btaa047. [Epub ahead of print]
    TeSS: a platform for discovering life science training opportunities.
    Niall Beard, Finn Bacall, Aleksandra Nenadic, Milo Thurston, Carole A Goble, Susanna-Assunta Sansone, Teresa K Attwood.
       SUMMARY: Dispersed across the Internet is an abundance of disparate, disconnected training information, making it hard for researchers to find training opportunities that are relevant to them. To address this issue, we have developed a new platform - TeSS - which aggregates geographically distributed information and presents it in a central, feature-rich portal. Data are gathered automatically from content providers via bespoke scripts. These resources are cross-linked with related data- and tools registries, and made available via a search interface, a data API and through widgets.
    AVAILABILITY AND IMPLEMENTATION: https://tess.elixir-europe.org.
    SUPPLEMENTARY INFORMATION: Supplementary data are available at Bioinformatics online.
    DOI:  https://doi.org/10.1093/bioinformatics/btaa047
  4. Int J Environ Res Public Health. 2020 02 08. pii: E1066. [Epub ahead of print]17(3):
    Information Management in Healthcare and Environment: Towards an Automatic System for Fake News Detection.
    Pablo Lara-Navarra, Hervé Falciani, Enrique A Sánchez-Pérez, Antonia Ferrer-Sapena.
      Comments and information appearing on the internet and on different social media sway opinion concerning potential remedies for diagnosing and curing diseases. In many cases, this has an impact on citizens' health and affects medical professionals, who find themselves having to defend their diagnoses as well as the treatments they propose against ill-informed patients. The propagation of these opinions follows the same pattern as the dissemination of fake news about other important topics, such as the environment, via social media networks, which we use as a testing ground for checking our procedure. In this article, we present an algorithm to analyse the behaviour of users of Twitter, the most important social network with respect to this issue, as well as a dynamic knowledge graph construction method based on information gathered from Twitter and other open data sources such as web pages. To show our methodology, we present a concrete example of how the associated graph structure of the tweets related to World Environment Day 2019 is used to develop a heuristic analysis of the validity of the information. The proposed analytical scheme is based on the interaction between the computer tool-a database implemented with Neo4j-and the analyst, who must ask the right questions to the tool, allowing to follow the line of any doubtful data. We also show how this method can be used. We also present some methodological guidelines on how our system could allow, in the future, an automation of the procedures for the construction of an autonomous algorithm for the detection of false news on the internet related to health.
    Keywords:  environment; fake news; graph; healthcare; reinforcement learning
    DOI:  https://doi.org/10.3390/ijerph17031066
  5. Evid Based Nurs. 2020 Feb 11. pii: ebnurs-2019-103222. [Epub ahead of print]
    Social media is a source of health-related misinformation.
    Kaye Rolls, Debbie Massey.
      
    Keywords:  nursing; primary care; world wide web technology
    DOI:  https://doi.org/10.1136/ebnurs-2019-103222
  6. Int J Environ Res Public Health. 2020 Feb 12. pii: E1160. [Epub ahead of print]17(4):
    Google Medical Update: Why Is the Search Engine Decreasing Visibility of Health and Medical Information Websites?
    Artur Strzelecki.
      The Google search engine answers many health and medical information queries every day. People have become used to searching for this type of information. This paper presents a study which examined the visibility of health and medical information websites. The purpose of this study was to find out why Google is decreasing the visibility of such websites and how to measure this decrease. Since August 2018, Google has been more rigorously rating these websites, since they can potentially impact people's health. The method of the study was to collect data about the visibility of health and medical information websites in sequential time snapshots. Visibility consists of combined data of unique keywords, positions, and URL results. The sample under study was made up of 21 websites selected from 10 European countries. The findings reveal that in sequential time snapshots, search visibility decreased. The decrease was not dependent on the country or the language. The main reason why Google is decreasing the visibility of such websites is that they do not meet high ranking criteria.
    Keywords:  Google; health information websites; medical update; search engine; search visibility
    DOI:  https://doi.org/10.3390/ijerph17041160
  7. Med Health Care Philos. 2020 Feb 13.
    Search engines, cognitive biases and the man-computer interaction: a theoretical framework for empirical researches about cognitive biases in online search on health-related topics.
    Luca Russo, Selena Russo.
      The widespread use of online search engines to answer the general public's needs for information has raised concerns about possible biases and the emerging of a 'filter bubble' in which users are isolated from attitude-discordant messages. Research is split between approaches that largely focus on the intrinsic limitations of search engines and approaches that investigate user search behavior. This work evaluates the findings and limitations of both approaches and advances a theoretical framework for empirical investigations of cognitive biases in online search activities about health-related topics. We aim to investigate the interaction between the user and the search engine as a whole. Online search activity about health-related topics is considered as a hypothesis-testing process. Two questions emerge: whether the retrieved information provided by the search engines are fit to fulfill their role as evidence, and whether the use of this information by users is cognitively and epistemologically valid and unbiased.
    Keywords:  Cognitive biases; Hypothesis testing; Information retrieval; Man–machine interaction; Web search engine
    DOI:  https://doi.org/10.1007/s11019-020-09940-9
  8. Rev Epidemiol Sante Publique. 2020 Feb 06. pii: S0398-7620(20)30147-4. [Epub ahead of print]
    An agent-based model about the effects of fake news on a norovirus outbreak.
    J Brainard, P R Hunter, I R Hall.
       BACKGROUND: Concern about health misinformation is longstanding, especially on the Internet.
    METHODS: Using agent-based models, we considered the effects of such misinformation on a norovirus outbreak, and some methods for countering the possible impacts of "good" and "bad" health advice. The work explicitly models spread of physical disease and information (both online and offline) as two separate but interacting processes. The models have multiple stochastic elements; repeat model runs were made to identify parameter values that most consistently produced the desired target baseline scenario. Next, parameters were found that most consistently led to a scenario when outbreak severity was clearly made worse by circulating poor quality disease prevention advice. Strategies to counter "fake" health news were tested.
    RESULTS: Reducing bad advice to 30% of total information or making at least 30% of people fully resistant to believing in and sharing bad health advice were effective thresholds to counteract the negative impacts of bad advice during a norovirus outbreak.
    CONCLUSION: How feasible it is to achieve these targets within communication networks (online and offline) should be explored.
    Keywords:  Agent-based-models; Bulles de filtres; Désinformation; Fake news; Filter bubbles; Modèles à base d’agents; Norovirus; Outbreak; Épidémie
    DOI:  https://doi.org/10.1016/j.respe.2019.12.001
  9. Int J Environ Res Public Health. 2020 Feb 12. pii: E1153. [Epub ahead of print]17(4):
    Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists.
    Michael Stellefson, Samantha R Paige, Beth H Chaney, J Don Chaney.
      The use of social media in public health education has been increasing due to its ability to remove physical barriers that traditionally impede access to healthcare support and resources. As health promotion becomes more deeply rooted in Internet-based programming, health education specialists are tasked with becoming more competent in computer-mediated contexts that optimize both online and offline consumer health experiences. Generating a better understanding of the benefits and drawbacks to using social media in the field is important, since health education specialists continue to weigh its advantages against potential concerns and barriers to use. Accordingly, this Special Issue aims to explore social media as a translational health promotion tool by bridging principles of health education and health communication that examine (1) the method with which social media users access, negotiate, and create health information that is both actionable and impactful for diverse audiences; (2) strategies for overcoming challenges to using social media in health promotion; and (3) best practices for designing, implementing, and evaluating social media forums in public health. In this commentary, we discuss the updated communication and advocacy roles and responsibilities of health education specialists in the context of social media research and practice.
    Keywords:  health education; health promotion; social media
    DOI:  https://doi.org/10.3390/ijerph17041153
  10. Aust J Prim Health. 2020 Feb 13.
    Understanding the preferences of Australian men for accessing health information.
    Nicolette A Hodyl, Kirsten Hogg, Desley Renton, Simon von Saldern, Rob McLachlan.
      With men currently reporting an increased desire to manage their own health, this mixed-methods study aimed to identify the preferred communication channels to support their access to information. Adult cisgender men (n=410) completed an anonymous survey that assessed current methods, preferences and barriers to accessing health information for general, minor, serious and private health concerns. Seven focus groups, attended by 69 men, further explored health-seeking behaviour. Survey results demonstrated the top methods to access information were through the GP or specialist and online searches, with rates differing by age and the type of health concern. Most men (>85%) reported information-seeking for serious concerns, while ~30% did not seek information for minor or private issues. For all ages, the top preferred methods for accessing information included GP or specialists, online searches and pharmacists, with other preferences varying by age, severity and sensitivity. Analysis of the focus group discussions revealed five key themes that help explain men's decisions and actions about seeking health-information: (i) denial; (ii) delayed information seeking; (iii) social constructs of masculinity; (iv) difficulty initiating discussions about health; and (v) perceived trust and validity of information. This study has provided insight into how information can be tailored to communicate effectively with men of different ages. This will support appropriate health-seeking behaviours in response to minor, serious and private health concerns.
    DOI:  https://doi.org/10.1071/PY19142
  11. Med Oral Patol Oral Cir Bucal. 2020 Feb 10. pii: 23374. [Epub ahead of print]
    Quality of information about oral cancer in Brazilian Portuguese available on Google, Youtube, and Instagram.
    K-K Passos, A-C Leonel, P-R Bonan, J-F Castro, M-L Pontual, F-M Ramos-Perez, D-E Perez.
       BACKGROUND: To evaluate the quality of oral cancer information in Brazilian Portuguese on Google, YouTube, and Instagram.
    MATERIAL AND METHODS: The first 100 links of each platform characterized the initial sample. The websites and Instagram were evaluated using the JAMA benchmarks, the Discern instrument, and the Flesch readability index (Flesch Reading Ease). The existence of Health on the Net (HON) code was also registered on websites. The usefulness of each video on YouTube was classified as not useful, slightly useful, moderately useful, or very useful.
    RESULTS: Thirty-four websites, 39 Instagram posts, and 57 videos were evaluated, of which 18 (33.3%) websites and 19 (48.7%) Instagram posts covered only 2 of the 4 JAMA benchmarks. For the Discern instrument, 20 (37%) and 18 (33.3%) websites exhibited low and moderate reliability, respectively, while 26 (66.7%) Instagram posts were of low confidence. The level of intelligibility of both websites and Instagram was difficult. Only three websites exhibited the HONcode. Forty-one (71.9%) videos on YouTube were moderately useful.
    CONCLUSIONS: Information on oral cancer on the Internet in Brazilian Portuguese is of low quality. Thus, educational and governmental institutions have a responsibility to produce and indicate reliable sources of information for the population.
    DOI:  https://doi.org/10.4317/medoral.23374
  12. Angle Orthod. 2020 Feb 11.
    YouTube as a source of information about orthodontic clear aligners.
    Gokay Ustdal, Ayca Ustdal Guney.
       OBJECTIVES: To evaluate the content, reliability, and quality of videos about orthodontic clear aligners on YouTube.
    MATERIALS AND METHODS: Researchers used the Google Trends website to determine that the most frequently used search term for orthodontic clear aligners on the Internet was: "Invisalign." A search was then conducted on YouTube using the key word "Invisalign." From the first 140 results, 100 videos were selected for analysis. A 13-point content score was used to classify poor-content and rich-content videos, and the global quality scale (GQS) was used to examine quality of the videos. To evaluate reliability of the information, a five-question scale was used. The Mann-Whitney U-test, χ2 test, and Pearson correlation coefficients were used for statistical evaluations.
    RESULTS: Of the YouTube videos, 33 were classified as rich content and 67 as poor content. Most videos (73%) were uploaded by laypeople, and most uploaders (71%) were women. The most commonly discussed content was instructions (65%), followed by procedure (57%) and pain (52%). Regarding the GQS, most of the videos were evaluated as moderate quality (51%). Compared with the poor-content video group, the rich-content video group had a significantly higher GQS score (P = .004). There was no significant difference between the poor-content and rich-content groups regarding information reliability (P > .05).
    CONCLUSIONS: Video content on YouTube relating to aligner orthodontics was generally insufficient. The quality of videos was moderate, but the reliability of information was generally poor. Specialists should refer patients to reliable sources of information.
    Keywords:  Clear aligners; Invisalign; Social media; YouTube
    DOI:  https://doi.org/10.2319/072419-491.1
  13. Int J Prev Med. 2020 ;11 1
    Health Professionals' Perception Related to Communication Technologies for Access to Information about Crack.
    Maykon A P Novais, Marcia M C De Liberal, Solange A Nappo, Paola Zucchi.
       Background: The aim of this study is to identify the information and communication technologies used by health professionals to assist in training and updating of technical and scientific knowledge about crack, exchange of experiences, and development of programs to prevent consumption and treatment of addicts.
    Methods: The qualitative methodology was used, constructed an intentional sample by criteria and applied research techniques through semi-structured interviews, triangulation of the analysis, and key informants. The study resulted in the presentation of differences between the way key informants and health professionals sought information.
    Results: Internet was the preferred source; however, key informants sought information on sites of scientific journals and reference centers, while health professionals did free searches on the internet to consume information.
    Conclusions: The literature does not reflect a broad scope of the specific area, but relates the problem of access to health information to other characteristics. The sources of information about crack are focused on digital technologies, the internet and its specific tools. It also finds that health professionals are not being capacitate solidly on the subject of study.
    Keywords:  Crack cocaine; and communication technology; health professionals; information
    DOI:  https://doi.org/10.4103/ijpvm.IJPVM_197_19
  14. Ann Transl Med. 2019 Dec;7(24): 812
    The contributor roles for randomized controlled trials and the proposal for a novel CRediT-RCT.
    Zhongheng Zhang, Stephen D Wang, Grace S Li, Guilan Kong, Hongqiu Gu, Fernando Alfonso.
       Background: The past decade has witnessed a rapid increase in the number of contributors per article, which has made explicitly defining the roles of each contributor even more challenging. The Contributor Roles Taxonomy (CRediT) was developed to explicitly define author roles, but there is a lack of empirical data on how CRediT is used in clinical trials. This study aimed to provide empirical data on the use of CRediT in randomized controlled trials (RCTs) and discuss some limitations of CRediT. A new taxonomy (CRediT-RCT) is proposed to explicitly define the author roles in RCTs.
    Methods: The electronic database of PubMed was searched from July 2017 to October 2019 to identify component trials with a randomized controlled design. Publications from the Public Library of Science (PLoS) were included because they embed the CRediT roles within the authors' metadata rather than solely as a separate paragraph of text.
    Results: A total of 446 articles involving 4,185 authors were included in the study. Most authors participated in the study's conceptualization (44.9%) and investigation (48.8%), but only a fraction of the authors participated in software management (7.4%). Many CRediT roles were correlated with each other: the strongest correlation was the one between funding acquisition and conceptualization (correlation metric =0.39), followed by the one between conceptualization and methodology (0.37). The authors who acquired funding (OR: 2.06; 95% CI: 1.54-2.76; P<0.001), did project administration (OR: 1.54; 95% CI: 1.17-2.03; P=0.002), performed supervision (OR: 2. 60; 95% CI: 1.93-3.52; P<0.001), wrote the original draft (OR: 4.83; 95% CI: 3.54-6.60; P<0.001), or were the first author (OR: 7.85; 95% CI: 5.71-10.87; P<0.001), were more likely to be the corresponding author. Also, while the original draft writing was significantly associated with the designation of the first author (OR: 37.49; 95% CI: 25.29-57.57; P<0.001), the first author did not perform review and editing (OR: 0.55; 95% CI: 0.40-0.75; P<0.001), supervision (OR: 0.49; 95% CI: 0.36-0.67; P<0.001), or resource management (OR: 0.71; 95% CI: 0.50-1.00; P=0.053). We further propose a novel Contributor Roles Taxonomy for Randomized Controlled Trials (CRediT-RCT) which includes 10 roles.
    Conclusions: The present study provides empirical data on the use of CRediT for RCTs, and some limitations of the taxonomy are discussed. We further propose a new CRediT-RCT which includes 10 roles.
    Keywords:  Contribution; authorship; contributor roles; randomized controlled trial; taxonomy
    DOI:  https://doi.org/10.21037/atm.2019.12.96
  15. JMIR Form Res. 2020 Feb 12. 4(2): e14496
    A Weekly, Evidence-Based Health Letter for Caregivers (90Second Caregiver): Usability Study.
    Athena Milios, Patrick McGrath, Hannah Baillie.
       BACKGROUND: Informal caregivers are family members or close friends who provide unpaid help to individuals with acute or chronic health conditions so that they can manage daily life tasks. The greatest source of health information is the internet for meeting the needs of caregivers. However, information on the internet may not be scientifically valid, it may be written in language that is difficult to read, and is often in very large doses. 90Second Caregiver is a health letter whose aim is to disseminate knowledge to caregivers in a user-friendly, weekly format, in order to improve their wellbeing.
    OBJECTIVE: The main objective was to test a sample of 90Second Caregiver health letters in order to assess their usability and to optimize the design and content of the health letters.
    METHODS: Usability research themes were assessed using semi-structured phone interviews, incorporating the Think Aloud method with retrospective questioning.
    RESULTS: Usability was assessed in the context of five main themes: understandability and learnability, completeness, relevance, and quality and credibility of the health letter content, as well as design and format. Caregivers generally provided positive feedback regarding the usability of the letters. The usability feedback was used to refine 90Second Caregiver in order to improve the design and content of the series. Based on the results of this study, it may be of maximum benefit to target the series towards individuals who are new to caregiving or part-time caregivers, given that these caregivers of the sample found the letters more useful and relevant and had the most positive usability experiences.
    CONCLUSIONS: The findings assisted in the improvement of the 90Second Caregiver template, which will be used to create future health letters and refine the letters that have already been created. The findings have implications for who the 90Second Caregiver series should be targeting (ie, newer or part-time caregivers) in order to be maximally impactful in improving mental health and wellbeing-related outcomes for caregivers, such as self-efficacy and caregiving knowledge. The results of this study may be generalizable to the examination of other electronic health information formats, making them valuable to future researchers testing the usability of health information products. In addition, the methods used in this study are useful for usability hypothesis generation. Lastly, our 90Second delivery approach can generate information useful for a set of similar products (eg, weekly health letters targeted towards other conditions/populations).
    Keywords:  anxiety; caregivers; depression; health information; hope; mental health; persuasive design; stigma; usability
    DOI:  https://doi.org/10.2196/14496
  16. J Laryngol Otol. 2020 Feb 13. 1-3
    Qualitative evaluation of paediatric surgical otolaryngology content on YouTube.
    B Ward, R Bavier, C Warren, J Yan, B Paskhover.
       OBJECTIVE: This study evaluated the quality of YouTube content focusing on common paediatric otolaryngology procedures, as this content can influence the opinions and medical decisions of patients.
    METHODS: A total of 120 YouTube videos were compiled to review using the terms 'adenoid removal', 'adenoidectomy', 'ear tubes', 'tympanostomy', 'tonsil removal' and 'tonsillectomy'. The Discern criteria was used to rate the quality of health information presented in each video.
    RESULTS: The mean bias Discern score was 3.18 and the mean overall Discern score was 2.39. Videos including US board certified physicians were rated significantly higher (p < 0.001) than videos without (bias Discern score = 3.00 vs 2.38; overall Discern score = 3.79 vs 1.55). The videos had been viewed a total of 176 769 549 times.
    CONCLUSION: Unbiased, high quality videos on YouTube are lacking. As patients may rely on this information when making medical decisions, it is important that practitioners continually evaluate and improve this video content. Otolaryngologists should be prepared to discuss YouTube content with patients.
    Keywords:  Adenoids; Social Media; Tonsillectomy; Tympanostomy
    DOI:  https://doi.org/10.1017/S002221512000016X
  17. Radiography (Lond). 2019 Oct 15. pii: S1078-8174(19)30146-4. [Epub ahead of print]
    Evaluating the perceptions of the transgender and non-binary communities of pelvic radiotherapy side effect information booklets.
    H Burton, P Pilkington, P Bridge.
       INTRODUCTION: Patients undergoing radiotherapy for pelvic cancers will often experience acute and late toxicity which can result in symptoms which have a significant impact on psychosocial functioning and quality of life. Having written information regarding these symptoms enables informed decision-making and ongoing support. Transgender and non-binary communities are a marginalised but steadily growing subsection of the radiotherapy patient population yet their needs differ from those of the general population. This study aimed to evaluate the relevance of the pelvic radiotherapy patient information booklets with regard to this communities.
    METHODS: An online survey was distributed via social media to evaluate the perceptions of these communities of four commonly distributed pelvic radiotherapy information booklets.
    RESULTS: There were 19 full responses and most participants expressed discomfort regarding being provided with (11/19) or picking up (10/19) the booklets. Although most (11/19) agreed that the material in the booklets was relevant, the same number felt that the wording was not. Some of the language and assumptions made regarding the transgender and non-binary communities were incorrect and had the potential to cause distress.
    CONCLUSION: The importance of providing guidance and support to these communities was identified.
    IMPLICATIONS FOR PRACTICE: Further research is required to establish how best to provide inclusive patient information for transgender and non-binary individuals.
    Keywords:  Information booklets; Pelvis; Radiotherapy; Transgender
    DOI:  https://doi.org/10.1016/j.radi.2019.09.008
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