Enabling Health Information Recommendation Using Crowdsourced Refinement in Web-Based Health Information Applications: User-Centered Design Approach and EndoZone Informatics Case Study.

BACKGROUND: In the digital age, search engines and social media platforms are primary sources for health information, yet their commercial interests-focused algorithms often prioritize irrelevant content. Web-based health applications by reputable sources offer a solution to circumvent these biased algorithms. Despite this advantage, there remains a significant gap in research on the effective integration of content-ranking algorithms within these specialized health applications to ensure the delivery of personalized and relevant health information. OBJECTIVE: This study introduces a generic methodology designed to facilitate the development and implementation of health information recommendation features within web-based health applications. METHODS: We detail our proposed methodology, covering conceptual foundation and practical considerations through the stages of design, development, operation, review, and optimization in the software development life cycle. Using a case study, we demonstrate the practical application of the proposed methodology through the implementation of recommendation functionalities in the EndoZone platform, a platform dedicated to providing targeted health information on endometriosis. RESULTS: Application of the proposed methodology in the EndoZone platform led to the creation of a tailored health information recommendation system known as EndoZone Informatics. Feedback from EndoZone stakeholders as well as insights from the implementation process validate the methodology's utility in enabling advanced recommendation features in health information applications. Preliminary assessments indicate that the system successfully delivers personalized content, adeptly incorporates user feedback, and exhibits considerable flexibility in adjusting its recommendation logic. While certain project-specific design flaws were not caught in the initial stages, these issues were subsequently identified and rectified in the review and optimization stages. CONCLUSIONS: We propose a generic methodology to guide the design and implementation of health information recommendation functionality within web-based health information applications. By harnessing user characteristics and feedback for content ranking, this methodology enables the creation of personalized recommendations that align with individual user needs within trusted health applications. The successful application of our methodology in the development of EndoZone Informatics marks a significant progress toward personalized health information delivery at scale, tailored to the specific needs of users.

High-Quality eHealth Websites for Information on Endometriosis: Systematic Search.

BACKGROUND: eHealth websites are increasingly being used by community members to obtain information about endometriosis. Additionally, clinicians can use these websites to enhance their understanding of the condition and refer patients to these websites. However, poor-quality information can adversely impact users. Therefore, a critical evaluation is needed to assess and recommend high-quality endometriosis websites. OBJECTIVE: This study aimed to evaluate the quality and provide recommendations for high-quality endometriosis eHealth websites for the community and clinicians. METHODS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines informed 2 Google searches of international and Australian eHealth websites. The first search string used the terms "endometriosis," "adenomyosis," or "pelvic pain," whereas "Australia" was added to the second search string. Only free eHealth websites in English were included. ENLIGHT, a validated tool, was used to assess the quality across 7 domains such as usability, visual design, user engagement, content, therapeutic persuasiveness, therapeutic alliance, and general subjective evaluation. Websites with a total score of 3.5 or more were classified as "good" according to the ENLIGHT scoring system and are recommended as high-quality eHealth websites for information on endometriosis. RESULTS: In total, 117 eHealth websites were screened, and 80 were included in the quality assessment. Four high-quality eHealth websites (ie, those that scored 3.5 or more) were identified (Endometriosis Australia Facebook Page, Endometriosis UK, National Action Plan for Endometriosis on EndoActive, and Adenomyosis by the Medical Republic). These websites provided easily understood, engaging, and accurate information. Adenomyosis by the Medical Republic can be used as a resource in clinical practice. Most eHealth websites scored well, 3.5 or more in the domains of usability (n=76, 95%), visual design (n=64, 80%), and content (n=63, 79%). However, of the 63 websites, only 25 provided references and 26 provided authorship details. Few eHealth websites scored well on user engagement (n=18, 23%), therapeutic persuasiveness (n=2, 3%), and therapeutic alliance (n=22, 28%). In total, 30 (38%) eHealth websites scored well on general subjective evaluation. CONCLUSIONS: Although geographical location can influence the search results, we identified 4 high-quality endometriosis eHealth websites that can be recommended to the endometriosis community and clinicians. To improve quality, eHealth websites must provide evidence-based information with appropriate referencing and authorship. Factors that enhance usability, visual design, user engagement, therapeutic persuasiveness, and therapeutic alliance can lead to the successful and long-term uptake of eHealth websites. User engagement, therapeutic persuasiveness, and therapeutic alliance can be strengthened by sharing lived experiences and personal stories and by cocreating meaningful content for both the community and clinicians. Reach and discoverability can be improved by leveraging search engine optimization tools. TRIAL REGISTRATION: PROSPERO CRD42020185475; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=185475&VersionID=2124365.

Evaluation of a web-based resource to improve menstrual health literacy and self-management in young women.

OBJECTIVE: Menstrual cycle-related conditions, such as dysmenorrhea and heavy bleeding, are common amongst those under 25 years. Despite having significant impact on work, education, and social activities, most do not seek medical advice, preferring to self-manage their symptoms. We aimed to determine if access to a web-based resource was a feasible and acceptable method for improving menstrual health literacy and encouraging health seeking behavior. METHODS: People were eligible to participate if they were currently living in Australia, aged 14-25 years, and had menstruated for at least 12 months. Access to the resource, comprising evidence-based information on the menstrual cycle, the Period ImPact and Pain Assessment (PIPPA) tool, and guidance on self-management options, was provided for three menstrual cycles. RESULTS: Seventy-five participants with a mean age of 20.4 years were enrolled with 56 (75%) providing pre and post measures. Recruitment rate and retention rates met pre-specified criteria for feasibility. Eighty five percent of the participants reported the web-based resource was easy to use, and 90% reported they found the information provided 'very helpful'. Just under half (48%) reported the resource changed what they thought was a 'normal' period. Forty-three percent visited their doctor regarding their menstrual symptoms during the study period, with 84% indicating that they made the appointment due to the resource; over half (56%) who visited their doctor received a referral to a gynecologist. CONCLUSION: Access to a web-based resource on menstrual health literacy was found to be acceptable and feasible to young people and may encourage health-seeking behavior.

Lessons from implementing the Australian National Action Plan for Endometriosis.

Abstract: Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted 'gold-standard' surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs. Lay summary: Endometriosis is a chronic disease where tissue like the lining of the uterus is found in other locations around the body. For the 830,000 people living with endometriosis in Australia, this often results in an immense burden on all aspects of daily life. In 2018, Australia was the first country to introduce a roadmap and blueprint to tackle endometriosis in a nationwide coordinated manner with the National Action Plan for Endometriosis. This plan was created as a partnership between government, endometriosis experts and advocacy groups. There are several other countries who are now considering similar plans to address the burden of endometriosis. As researchers and clinicians are working to improve the lives of those with endometriosis, we share our experiences and discuss areas that should be considered when developing these national plans, including diagnostic pathways without the need for surgery, and building new centres of expertise in Endometriosis and Pelvic Pain.

Communicating endometriosis with young women to decrease diagnosis time.

ISSUES ADDRESSED: Endometriosis is estimated to affect approximately 10% of women. Although early detection may enhance health outcomes and fertility, there is a recognised diagnostic delay of 6.7 years. There are limited data on ways to discuss endometriosis with young women. The aims of the present study were to determine what young women know about endometriosis, what young women want to know about endometriosis and how this is best communicated to promote early detection. METHODS: Women aged 16-25 years were invited to complete an online survey that was advertised via Facebook, email, Twitter and flyers at high schools and a university. RESULTS: In all, 131 women responded to the survey. Fifty-two percent of participants had heard of endometriosis, 89% thought teenagers should be educated about endometriosis and 78% thought that young men should also be educated about the condition. Favoured sources for obtaining information were schools (40%), the Internet (22%) and magazines (13%). Participants were most comfortable talking to a doctor (75%), parent (59%) or friend (51%). Participants primarily wanted to know about the disease, its symptoms, risk factors and treatment. Many participants' descriptions of endometriosis were vague or inaccurate. CONCLUSIONS: The results of the present study indicate that young women are keen to learn about endometriosis, particularly its symptoms. Preferential sources of information appear to be schools or the Internet, and young women appear more comfortable talking to doctors. SO WHAT? To promote early detection of endometriosis, health promotion activities should direct their information towards sources that young women prefer.