bims-librar Biomed News
on Biomedical librarianship
Issue of 2021–09–19
eleven papers selected by
Thomas Krichel, Open Library Society



  1. Health Info Libr J. 2021 Sep 16.
       BACKGROUND: The European Parliament's directive on open data indicates the direction to follow for all public institutions in Europe. The portal Polish Platform of Medical Research (PPM) required more information about researcher attitudes and training requirements for strategic planning.
    OBJECTIVES: The aim was to assess (1) the status of knowledge about research data management among medical researchers in Poland, and (2) their attitudes towards data sharing. This knowledge may help to inform a training program and adapt PPM to the requirements of researchers.
    METHODS: The authors circulated an online survey and received responses from 603 researchers representing medical sciences and related disciplines. The survey was conducted in 2019 at seven Polish medical universities and at the Nofer Institute of Occupational Medicine. Analysis used descriptive statistics.
    RESULTS: Data sharing was not widespread (55.7% only shared with their research team, 9.8% had shared data on an open access basis). Many cited possible benefits of research data sharing but were concerned about drawbacks (e.g. fraud, plagiarism).
    DISCUSSION: Polish medical scientists, like many researchers, are not aware of the processes required for safe data preparation for sharing. Academic libraries should develop roles for data librarians to help train researchers.
    CONCLUSION: Fears about the dangers of data sharing need to be overcome before researchers are willing to share their own research data.
    Keywords:  Europe; academic; central; data management; education and training; institutional repositories; libraries; medical; research data; research support; surveys
    DOI:  https://doi.org/10.1111/hir.12403
  2. Curr Med Res Opin. 2021 Sep 12. 1-2
      Plain language summaries of peer-reviewed medical journal publications are a means of sharing research with a broad range of audiences and may improve the transparency, accountability, accessibility, discoverability, and inclusivity of medical research. There is currently an ongoing, industry-wide effort to establish consensus on plain language summaries, and initiatives are already in place that provide detailed guidance on plain language best practice, co-creation methods, patient-focused content, graphic and digital considerations, and publisher-specific guidelines. However, there remains a need for a foundational set of recommendations that complement existing initiatives to outline the minimum steps needed to develop discoverable, plain language summaries that are trustworthy, credible, and of high quality. Here, we present the Open Pharma recommendations for plain language summaries of peer-reviewed medical journal publications. These recommendations were initially developed by the Open Pharma Accessibility workstream and were extensively reviewed and refined during an expert roundtable and a focused, public consultation. Open Pharma is a multi-sponsor collaboration of pharmaceutical companies, non-pharmaceutical funders, publishers, patients, academics, regulators, editors, and societies seeking to identify and drive positive changes in the publishing of pharmaceutical company-funded research. We recommend that plain language summaries should be in the style of an abstract, free of technical jargon, unbiased, non-promotional, peer reviewed, and easily accessed. Plain language summaries should also meet the technical requirements to be indexed in directories such as PubMed. Ultimately, these recommendations are intended to be a concise outline of a minimum standard that provides top-line guidance on plain language summaries for authors, medical writers, publishers, and research funders.
    Keywords:  Plain language summary; accessibility; discoverability; inclusivity pharmaceutical research; public engagement
    DOI:  https://doi.org/10.1080/03007995.2021.1971185
  3. Gigascience. 2021 Sep 16. pii: giab060. [Epub ahead of print]10(9):
       BACKGROUND: The Investigation/Study/Assay (ISA) Metadata Framework is an established and widely used set of open source community specifications and software tools for enabling discovery, exchange, and publication of metadata from experiments in the life sciences. The original ISA software suite provided a set of user-facing Java tools for creating and manipulating the information structured in ISA-Tab-a now widely used tabular format. To make the ISA framework more accessible to machines and enable programmatic manipulation of experiment metadata, the JSON serialization ISA-JSON was developed.
    RESULTS: In this work, we present the ISA API, a Python library for the creation, editing, parsing, and validating of ISA-Tab and ISA-JSON formats by using a common data model engineered as Python object classes. We describe the ISA API feature set, early adopters, and its growing user community.
    CONCLUSIONS: The ISA API provides users with rich programmatic metadata-handling functionality to support automation, a common interface, and an interoperable medium between the 2 ISA formats, as well as with other life science data formats required for depositing data in public databases.
    Keywords:  API; life science; metadata; open-source software; reproducibility; standards
    DOI:  https://doi.org/10.1093/gigascience/giab060
  4. Musculoskeletal Care. 2021 Sep 14.
       INTRODUCTION: Maintaining productive employment can be challenging for people with ongoing low back pain (LBP) or neck pain (NP) due to pain, function and participation sequelae. Resources and information to support them staying at work may be beneficial, although preferences for the nature and accessibility of resources remain uncertain. The current study aimed to explore the work experiences and information-seeking behaviours of employed individuals with ongoing LBP or NP, to support them in staying at work.
    METHOD: Semi-structured interviews were undertaken with 40 participants currently employed with ongoing LBP or NP. The interview schedule covered participants' experience of managing their LBP or NP at work, resources sought to assist with finding or maintaining employment, and where they accessed these resources. Interviews were recorded and analysed using thematic analysis.
    RESULTS: Participants were employed in a wide range of job types and most reported a decrease in productivity. Five key themes were identified: (1) the meaning of work, (2) to disclose or not, (3) information seeking, (4) gaps in resources, (5) trusted sources. Work was highly valued by participants, despite the challenges in maintaining employment with ongoing LBP or NP. To support staying at work a range of information was sought by participants, but challenges in accessing reputable resources and trusting the sources were identified as key issues.
    CONCLUSION: Opportunities exist for easily accessible, multi-level information from trustworthy sources targeted at the employer organisations, individuals and clinicians to support people in staying at work with ongoing LBP or NP.
    Keywords:  low back pain; musculoskeletal; work
    DOI:  https://doi.org/10.1002/msc.1591
  5. Am J Orthod Dentofacial Orthop. 2021 Sep 08. pii: S0889-5406(21)00525-4. [Epub ahead of print]
       INTRODUCTION: The study aimed to evaluate the content and quality of information offered by YouTube for patients seeking information related to orthodontic retainers.
    METHODS: YouTube was searched using the keyword "orthodontic retainers" from Google Trends. From the first 120 results, 97 videos were selected to be analyzed. Videos were rated for quality by video information and quality index (VIQI) and the global quality scale (GQS). Videos were classified as low- and high-content groups using a 10-point score considering several retainer-related topics. Mann-Whitney U tests, chi-square tests, and Pearson correlation coefficients were used for statistical evaluations.
    RESULTS: Most YouTube videos were uploaded by dentists/specialists (62.9%). We classified 12 videos as high content and 85 as low content. Instructions on the use of the orthodontic retainer was the most commonly covered topic (42.3%), followed by the effect on oral hygiene (38.1%), definition (37.1%), procedure of preparing orthodontic retainers (33.0%), and procedure of positioning (30.9%). A lower percentage of videos (6.2%) mentioned soft tissue irritation. The high-content video group had a significantly higher median value of GQS score and VIQI (P <0.001). The correlation between GQS and VIQI was strong (r = 0.698; P <0.01).
    CONCLUSIONS: The content of YouTube videos for orthodontic retainers could not be considered as an adequate source of information for patients on orthodontic retainers. Most videos included instructions on the use of orthodontic retainers, but fewer videos mentioned the effect on speech performance and soft tissue irritations.
    DOI:  https://doi.org/10.1016/j.ajodo.2020.12.023
  6. Andrologia. 2021 Sep 14. e14246
      The purpose of this study is to evaluate the quality of information on YouTube regarding penile prosthesis. We searched the term 'penile prosthesis' on YouTube recording the first 100 video links. Each video was analysed by three evaluators through the validate Patient Education Materials Assessment Tool (PEMAT), the DISCERN quality criteria for consumer health information and a misinformation assessment tool specifically created for this subject. All the videos were viewed 10'011'232 times. Median duration time was 5'13″ (IQR = 7'25″-1'58″). Sixty-eight per cent were nonsurgical videos and 32% of them contained surgical procedures. Most of the videos were uploaded by Private Companies (51%). Videos were primarily directed at patients (73 of 100 videos). The mean PEMAT understandability score was 57.8% ± 19.2%, the actionability score was 0% (IQR = 33%-0%). The median DISCERN score was 26 (IQR = 30-21). None of the videos provided a complete patients' information and the overall mean misinformation score was 3.21 ± 2.24. Based on our data, video's quality according to PEMAT and DISCERN score is mostly poor. Furthermore popularity does not correlate with the quality of the videos, and most of them fail to provide adequate patient's information.
    Keywords:  DISCERN; PEMAT; YouTube; penile prosthesis; social media
    DOI:  https://doi.org/10.1111/and.14246
  7. Cureus. 2021 Aug;13(8): e17085
      Background YouTube (YT) is the most common video platform accessed by surgical trainees for the preparation of surgery. However, the quality of the YT videos has been questioned time and again. This study was performed to comprehensively assess the quality of the available YT videos on pediatric laparoscopic pyeloplasty (LP). Materials and Methods The term "laparoscopic pyeloplasty in children" was searched in YT on June 3, 2021, and ten most-viewed videos on LP were included. The percentage video power index (%VPI), the Journal of American Medical Association (JAMA) benchmark criteria, and the laparoscopic surgery video educational guidelines (LAP-VEGaS) video assessment tool were used to assess the video popularity, the quality of medical information, and the overall quality of the included videos respectively. Videos were defined as acceptable (score of 11 or more) or poor quality (score <11) based on LAP-VEGaS scores. The inter-observer agreement, in terms of the LAP-VEGaS scoring, was observed among two surgeons using the kappa statistics. Results The median values of the %VPI and JAMA scores of the included YT videos were 68.1 (range 0-13570) and 2 (range 1-2) respectively. The median LAP-VEGaS score of these videos was 6.75 (range 2-16.5) with only two videos having acceptable quality. The quality of these videos was poor in 7/9 domains of the LAP-VEGaS tool. A moderate inter-observer agreement (kappa=0.542) was observed in terms of the LAP-VEGaS scores assigned to the videos (p<0.0001). Conclusion A comprehensive assessment of the ten most-viewed YT videos on pediatric LP revealed poor overall quality. The included videos depicted sub-optimal presentation of the medical information and weak conformity to the LAP-VEGaS guidelines.
    Keywords:  children; e-learning; internet; laparoscopic pyeloplasty; operative video; youtube
    DOI:  https://doi.org/10.7759/cureus.17085
  8. Restor Dent Endod. 2021 Aug;46(3): e40
       Objectives: The purpose of this study was to critically evaluate the quality, reliability and educational content of the information of vital pulp treatment videos available on YouTube.
    Materials and Methods: The keywords "pulpotomy" and "pulp capping" were searched on YouTube on 5th July 2020, until 60 English language videos of each search term with a duration shorter than 15 minutes were acquired. Video characteristics were recorded and Video Power Index (VPI) was calculated. Reliability and educational quality of videos were evaluated using the Modified DISCERN score, the Journal of American Medical Association (JAMA) benchmark criteria and Global Quality Scores (GQS). Videos were categorized by uploading source.
    Results: Regarding pulpotomy, 31.7% of the videos were uploaded by specialists and 68.3% were directed by non-specialists. In the case of pulp capping, the corresponding percentages were 45% and 55%, respectively. Videos uploaded by specialists had significantly higher modified DISCERN, JAMA and GQS scores compared to those uploaded by non-specialists. Endodontists tended to have the highest reliability and VPI scores.
    Conclusions: YouTube videos on vital pulp treatment contain low educational quality or incomplete information. Low popularity of dental pulp capping and pulpotomy videos may be attributed to the specialized nature of these procedures. As YouTube represents an important source for patient information about different health topics, reliable informative videos should be uploaded by specialized dental professionals.
    Keywords:  Educational content; Patient information; Pulp capping; Pulpotomy; Reliability; YouTube
    DOI:  https://doi.org/10.5395/rde.2021.46.e40
  9. BMC Complement Med Ther. 2021 Sep 17. 21(1): 233
       BACKGROUND: The global prevalence of diabetes mellitus is projected to reach approximately 700 million by the year 2045, with roughly 90-95% of all diabetes cases being type 2 in nature. Patients with type 2 diabetes mellitus (T2DM) frequently seek information about complementary and alternative medicine (CAM) online. This study assessed the quality of publicly accessible websites providing consumer health information at the intersection of T2DM and CAM.
    METHODS: An online search engine (Google) was searched to identify pertinent websites containing information specific to CAM for T2DM patients, and the relevant websites were then screened with an eligibility criteria. Consumer health information found on eligible websites were then assessed for quality using the DISCERN instrument, a 16-item standardized scoring system.
    RESULTS: Across the 480 webpages identified, 94 unique webpages remained following deduplication, and 37 eligible webpages belonged to and were collapsed into 30 unique websites that were each assessed using the DISCERN instrument. The mean overall quality score (question 16) across all 30 assessed websites was 3.55 (SD = 0.86), and the mean summed DISCERN score was 52.40 (SD = 12.11). Eighty percent of websites presented a wide range of CAM treatment options with the associated benefits/risks of each treatment, but in 56.7% of the websites, the sources used to collect information were unreliable.
    CONCLUSION: This study identified, assessed, and presents findings on the quality of online CAM information for T2DM. Although there were several high scoring websites, there was variability across most of the individual DISCERN items in the assessed websites. This study highlights the importance of awareness among healthcare providers regarding the reliability of online information about CAM treatment and management options for T2DM. Healthcare providers should be aware of patients' information seeking behaviour, guide them in navigating through the content they encounter online, and provide them with resources containing trustworthy and reliable information.
    Keywords:  Complementary and alternative medicine; Consumer health information; DISCERN; Diabetes; Information assessment; Quality of information; Type 2 diabetes mellitus
    DOI:  https://doi.org/10.1186/s12906-021-03390-3
  10. Int J Med Inform. 2021 Sep 02. pii: S1386-5056(21)00192-1. [Epub ahead of print]154 104566
       OBJECTIVES: The internet is an important source of travel health information. Individuals living with chronic illnesses consult patient organisation websites for illness-related information. We analysed the scope of online travel health information available to patients with pre-existing medical conditions.
    STUDY DESIGN: A descriptive content analysis of patient organisation websites was conducted.
    METHODS: The Google® search engine was interrogated using search terms related to the principal chronic diseases from the Global Burden of Disease Study. Data relating to 41 travel health variables were extracted from each eligible website. An aggregate quality score was derived for each organisation based on the presence of specific website information. Visitor usage and search analytics for each organisation's website were also described.
    RESULTS: We examined 145 official organisation websites relating to 10 major chronic illnesses. The largest number of websites was retrieved for patients with cancer (n = 36). Only 21 (16.5%) websites provided information on fitness-to-travel considerations. COPD websites had the highest average quality score (17.68%), followed by diabetes (14.91%) and dementia (13.28%). Mental health illness websites had the lowest score of 1.33%. There was a trend towards increased emphasis on pre-travel preparation and medications. Insect bite avoidance, malaria, animal bites, jet lag, and repatriation were addressed to the least extent.
    CONCLUSIONS: Our analysis exposes significant deficits in the coverage of travel health topics. Patient organisations should provide accessible pre-travel health advice to website users. Future research should elucidate the influence of web-based pre-travel health information on the behaviour of travellers with chronic disease.
    Keywords:  Chronic illness; Health literacy; Medications; Non-communicable diseases; Patient organisations; Travel health; Voluntary health associations
    DOI:  https://doi.org/10.1016/j.ijmedinf.2021.104566
  11. J Med Internet Res. 2021 Sep 13. 23(9): e14908
       BACKGROUND: eHealth literacy is significantly associated with patients' online information behavior, physician-patient relationship, patient adherence, and health outcomes. As an important product of the internet, online health communities (OHCs) can help redistribute idle medical resources, increase medical resource utilization, and improve patient adherence. However, studies on eHealth literacy in OHCs are limited. Therefore, this study examined patients' eHealth literacy regarding health information-seeking behavior and physician-patient communication in OHCs.
    OBJECTIVE: This study aimed to investigate the association between eHealth literacy in OHCs and patient adherence by employing social cognitive theory.
    METHODS: This was an empirical study, in which a research model consisting of 1 independent variable (patients' eHealth literacy), 3 mediators (physician-patient communication in OHCs, patient health information-seeking behavior in OHCs, and patients' perceived quality of health information in OHCs), 1 dependent variable (patient adherence), and 4 control variables (age, gender, living area, and education level) was established to examine the associations. Multi-item scales were used to measure variables. An anonymous online survey involving 560 participants was conducted through Chinese OHCs in July 2018 to collect data. Partial least squares and structural equation modeling were adopted to analyze data and test hypotheses.
    RESULTS: The survey response rate was 79.6% (446/560). The reliability, convergent validity, and discriminant validity were acceptable. Age, gender, living area, and education level were positively associated with patient adherence, and gender was positively associated with physician-patient communication and patients' perceived quality of internet health information in OHCs. Patients' eHealth literacy was positively associated with patient adherence through the mediations of physician-patient communication, internet health information-seeking behavior, and perceived quality of internet health information in OHCs.
    CONCLUSIONS: Results indicate that physician-patient communication, internet health information-seeking behavior, and the perceived quality of internet health information are significantly associated with improving patient adherence via a guiding of eHealth literacy in OHCs. These findings suggest that physicians can understand and guide their patients' eHealth literacy to improve treatment efficiency; OHCs' operators should this strengthen the management of information quality, develop user-friendly features, and minimize the gap between the actual and perceived information quality.
    Keywords:  OHCs; eHealth literacy; health information; online health communities; patient adherence; physician-patient communication
    DOI:  https://doi.org/10.2196/14908