Using focus groups to evaluate a multiyear consumer health outreach collaboration

Objectives: Academic health sciences librarians sought to evaluate the efficacy and future of the Health Information Specialists Program, a five-year consumer health information outreach collaboration with public libraries across the state.Methods: Five focus groups were held with participants from all five years of the program. Thirty-four participants from the program attended. Facilitators used structured interview guides consisting of eleven questions regarding the impact of the collaboration on participants’ abilities to connect themselves or others to health information; the usefulness of materials or knowledge gained and its applications; any consumer health outreach projects that arose from the program; and suggestions for future topics, formats, or modifications. Data was hand-coded and analyzed using the framework analysis methodology for qualitative research.Results: Participants reported feeling improved confidence and comfort in providing health information services to their patrons. Numerous instances of knowledge transfer—in their personal lives, with their colleagues, and for their patrons—were described. Participants reported improved abilities to both find and evaluate consumer health information, and many adapted class materials for their own programming or teaching. Suggestions were provided for future class topics as well as a program website.Conclusion: Based on data from the five focus groups, the Health Information Specialists Program has positively impacted participants in a number of ways. Primary among these were self-reported improvement in both health information retrieval skills and the ability to evaluate the reliability of health information online, as well as in the confidence to help patrons with their health information needs.

Quality of complementary and alternative medicine information for type 2 diabetes: a cross-sectional survey and quality assessment of websites

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.

Assessing the quality of complementary and alternative medicine website information for cancer: A cross-sectional review and analysis

Patients with cancer frequently utilize complementary and alternative medicine (CAM); prior to this, many seek information about these therapies online. Little is known about the quality of this web-based consumer health information (CHI). The present study aimed to address this paucity of research by evaluating the quality of websites containing information on CAM treatments for cancer. Six unique search terms were entered into Google across four English-speaking countries. The first 20 results of each search were assessed and included if they contained CAM consumer health information for the treatment and/or management of cancer. Eligible websites were assessed using the 16-item DISCERN instrument, designed to evaluate information quality. Of the 480 identified websites, 387 were duplicates, and 53 fit the eligibility criteria and were assessed using the DISCERN instrument. Mean summed DISCERN scores across all websites was 53.08 (SD = 12.75), and mean scores of the overall quality of each website was 3.22 (SD = 0.80). Website CHI quality on CAM therapies for cancer were generally acceptable. Several website quality issues were identified, including a lack of transparency surrounding references, areas of uncertainty, consequences of foregoing treatment, and treatment impacts on quality of life.

Cannabis for pain: a cross-sectional survey of the patient information quality on the Internet

Background Cannabis has increasingly become an alternative treatment for chronic pain, however, there is evidence of concomitant negative health effects with its long-term usage. Patients contemplating cannabis use for pain relief commonly see information online but may not be able to identify trustworthy and accurate sources, therefore, it is imperative that healthcare practitioners play a role in assisting them in discerning the quality of information. The present study assesses the quality of web-based consumer health information available at the intersection of cannabis and pain. Methods A cross-sectional quality assessment of website information was conducted. Three countries were searched on Google: Canada, the Netherlands, and the USA. The first 3 pages of generated websites were used in each of the 9 searches. Eligible websites contained cannabis consumer health information for pain treatment. Only English-language websites were included. Encyclopedias (i.e. Wikipedia), forums, academic journals, general news websites, major e-commerce websites, websites not publicly available, books, and video platforms were excluded. Information presented on eligible websites were assessed using the DISCERN instrument. The DISCERN instrument consists of three sections, the first focusing on the reliability of the publication, the second investigating individual aspects of the publication, and the third providing an overall averaged score. Results Of 270 websites identified across searches, 216 were duplicates, and 18 were excluded based on eligibility criteria, resulting in 36 eligible websites. The average summed DISCERN score was 48.85 out of 75.00 (SD = 8.13), and the average overall score (question 16) was 3.10 out of 5.00 (SD = 0.62). These overall scores were calculated from combining the scores for questions 1 through 15 in the DISCERN instrument for each website. Websites selling cannabis products/services scored the lowest, while health portals scored the highest. Conclusion These findings indicate that online cannabis consumer health information for the treatment/management of pain presents biases to readers. These biases included websites: (1) selectively citing studies that supported the benefits associated with cannabis use, while neglecting to mention those discussing its risks, and (2) promoting cannabis as “natural” with the implication that this equated to “safe”. Healthcare providers should be involved in the guidance of patients’ seeking and use of online information on this topic.

Dietary and herbal supplements for weight loss: assessing the quality of patient information online

Background Given the high prevalence of dietary and herbal supplement (DHS) use in tandem with the growing ease of internet access, patients commonly search online for consumer health information about these products. One common reason for DHSs use includes weight loss. Healthcare providers need to be aware of the quality of online information about DHSs for weight loss so they can adequately counsel their patients and provide them with guidance surrounding the identification of high-quality information resources. This study aimed to assess the quality of online DHSs consumer health information for weight loss that a “typical” patient might access online. Methods Six search terms were used to generate the first 20 websites on the Google search engine in four countries: Australia, Canada, the United Kingdom, and the United States (n = 480 websites). After applying exclusion criteria, eligible websites were quality assessed using the DISCERN instrument. This tool is comprised of 16 questions, each evaluated on a 5-point scale. The averages and standard deviations for each DISCERN instrument item, in addition to overall summed scores between 15 and 75 were calculated. Results Across 87 eligible websites, the mean summed score was 44.80 (SD = 11.53), while the mean overall DISCERN score of each website was 2.72 (SD = 0.99). In general, websites detailed and achieved their specified aims and described treatment benefits. However, most websites failed to describe the impact of treatment on overall quality of life and the impact of a no treatment option. The highest-scoring websites were largely government or health portal websites, while the lowest-scoring websites were largely commercial in nature. Conclusion High variability in DISCERN instrument scores was found across all websites assessed. Healthcare providers should be aware of the fact that their patients may be accessing misinformation online surrounding the use of DHSs for weight loss. Therefore, it is important for healthcare providers to ensure that they are providing their patients with guidance on how to identify high-quality resources online, in order that safe, effective, and evidence-based decisions are made surrounding the use of DHSs for weight loss.

Moral Distress Among Consumer Health Information Professionals: An Exploratory Study

Objectives – In recent years, moral distress has become a topic of interest among health professionals. Moral distress is most commonly described in the nursing literature, and refers to a situation wherein an individual knows the correct action to take, but is constrained from doing so. While moral distress differs from the classic ethical dilemma, in recent years practitioners and theorists have advocated for a broadening of the definition of moral distress. To date, no study has examined another group of individuals who frequently interact with patients and who may be constrained by the confines of their role - Consumer Health Information Professionals (CHIPS). The objective of this study was to determine if CHIPS experience moral distress and/or ethical dilemmas, and to determine what, if any, coping strategies these individuals have developed. Methods – This study employed a mixed methods approach. Quantitative data were gathered via an online survey which was distributed to relevant consumer health information professional electronic mail lists. The survey contained demographic questions and a series of questions related to potential discomfort within the context of work as a consumer health information professional. Qualitative data were also gathered through phone interviews with CHIPS. Interview questions included the participant’s definition of moral distress, professional experiences with moral distress, and any coping strategies to manage said distress. Results – The authors received 213 survey responses. To test whether any of our demographic variables help to explain survey response, we used STATA to calculate Pearson correlation coefficients. Individuals who were more likely to experience discomfort in their occupation as CHIPS included individuals with less experience and individuals who identified as Black and Latinx. Interview data indicated that participants most commonly experienced ethical dilemmas related to censorship, providing prognosis information, and feeling constrained by institutional policies. Few interview participants described scenarios that reflected moral distress. Conclusions – CHIPS do not appear to experience moral distress, at least according to its most narrow definition. CHIPS do consistently experience distinct ethical dilemmas, and the most durable patterns of this phenomenon appear to be related to experience level and racial identity. In recent years, researchers have raised calls to broaden the definition of moral distress from its narrow focus on constraint to include uncertainty, and CHIPs do experience moral uncertainty in their work. Further study is needed to determine how to best address the impacts of discomfort caused by ethical dilemmas among these groups.