Midwife-moderated social media groups as a validated information source for women during pregnancy.

BACKGROUND: Widespread use of the internet has fundamentally altered the way people access health information and communicate with health providers. Pregnant women are a group who are particularly highly motivated to seek out information online. However, where mothers actually obtain their information, who they trust to supply it, and whether or not it actually fulfils their needs is often unclear. This paper examines the experiences of women accessing advice and information on pregnancy and childbirth through a dedicated social-media platform, mediated by qualified midwives. The study formed part of a larger research project that focussed on professionally moderated online learning in maternity care, and the role of online communities. This paper reports on aspects of midwife mediated information provision in the context of these online communities. METHODS: Two secret (i.e. private / invitation only) Facebook groups were created. Both groups were moderated by 2 qualified midwives. One group had 17 mothers and the other 14 mothers. Both groups ran for 35 weeks. DATA AND ANALYSIS: The data included the written and spoken words of group participants and midwife-moderators in i) face-to-face (n = 4) and online (n = 4) post-intervention focus groups; ii) one-to-one interviews with group participants and midwife moderators (n = 24); iii) the complete corpus of text-based interaction across both groups; iv) a sub-set of private message sessions (n = 24) between individual participants and midwife-moderators. Thematic analysis was applied to the combined dataset. FINDINGS: Participants found engagement with midwives and other pregnant women via a social media group convenient and accessible. The groups provided a safe space for the sharing and validation of maternity relevant information. Members trusted their midwife-moderators to ensure information was reliable. For many members, the group became the primary source of pregnancy related information. CONCLUSION: Midwife-mediated social media groups offer a highly effective way of providing individualised information provision and social support for pregnant woman. Access to a group can also significantly impact on perceptions of relational continuity.

Content analysis of clinical questions from Australian general practice which are prioritised for answering: identifying common question types and perceived knowledge gaps.

Perceived knowledge gaps in general practice are not well documented but must be understood to ensure relevant and timely evidence for busy general practitioners (GPs) which reflects their diverse and changing needs. The aim of this study was to classify the types of questions submitted by Australian GPs to an evidence-based practice information service using established and inductive coding systems. We analysed 126 clinical questions submitted by 53 Australian GPs over a 1.5-year period. Questions were coded using the International Classification of Primary Care (ICPC-2 PLUS) and Ely and colleagues' generic questions taxonomy by two independent coders. Inductive qualitative content analysis was also used to identify perceived knowledge gaps. Treatment (71%), diagnosis (15%) and epidemiology (9%) were the most common categories of questions. Using the ICPC-2 classification, questions were most commonly coded to the endocrine/metabolic and nutritional chapter heading, followed by general and unspecified, digestive and musculoskeletal. Seventy per cent of all questions related to the need to stay up-to-date with the evidence, or be informed about new tests or treatments (including complementary and alternative therapies). These findings suggest that current guideline formats for common clinical problems may not meet the knowledge demands of GPs and there is gap in access to evidence updates on new tests, treatments and complementary and alternative therapies. Better systems for 'pulling' real-time questions from GPs could better inform the 'push' of more relevant and timely evidence for use in the clinical encounter.

Heterogeneous information network based clustering for precision traditional Chinese medicine.

BACKGROUND: Traditional Chinese medicine (TCM) is a highly important complement to modern medicine and is widely practiced in China and in many other countries. The work of Chinese medicine is subject to the two factors of the inheritance and development of clinical experience of famous Chinese medicine practitioners and the difficulty in improving the service capacity of basic Chinese medicine practitioners. Heterogeneous information networks (HINs) are a kind of graphical model for integrating and modeling real-world information. Through HINs, we can integrate and model the large-scale heterogeneous TCM data into structured graph data and use this as a basis for analysis. METHODS: Mining categorizations from TCM data is an important task for precision medicine. In this paper, we propose a novel structured learning model to solve the problem of formula regularity, a pivotal task in prescription optimization. We integrate clustering with ranking in a heterogeneous information network. RESULTS: The results from experiments on the Pharmacopoeia of the People's Republic of China (ChP) demonstrate the effectiveness and accuracy of the proposed model for discovering useful categorizations of formulas. CONCLUSIONS: We use heterogeneous information networks to model TCM data and propose a TCM-HIN. Combining the heterogeneous graph with the probability graph, we proposed the TCM-Clus algorithm, which combines clustering with ranking and classifies traditional Chinese medicine prescriptions. The results of the categorizations can help Chinese medicine practitioners to make clinical decision.

New roles and challenges for health information specialists: professional changes over the years.

In this article, guest writers from the Istituto Superiore di Sanità in Italy, the leading scientific technical body of the Italian National Health Service present a historic case study considering the role and evolution of the information specialists at their institution over a twenty year period. The paper places a particular emphasis on the initiatives undertaken in consumer health information and health literacy promotion, in order to improve public health in Italy. Areas covered include the development of online health information provision, early strategies to support the improvement of health literacy, and national projects and collaborations. H.S.

North American Population-Based Validation of the National Comprehensive Cancer Network Practice Guideline Recommendation of Pelvic Lymphadenectomy in Contemporary Prostate Cancer.

BACKGROUND: National Comprehensive Cancer Network (NCCN) guidelines recommend a pelvic lymph node dissection (PLND) in prostate cancer (PCa) patients treated with radical prostatectomy (RP) if a nomogram predicted risk of lymph node invasion (LNI) is ≥2%. We examined this and other thresholds, including nomogram validation. METHODS: We examined records of 26,713 patients treated with RP and PLND between 2010 and 2013, within the Surveillance, Epidemiology, and End Results database. Nomogram thresholds of 2-5% were tested and external validation was performed. RESULTS: LNI was recorded in 4.7% of patients. Nomogram accuracy was 80.4% and maintained minimum accuracy of 75.6% in subgroup analyses, according to age, race, and nodal yield >10. With the NCCN recommended 2% nomogram threshold, PLND could be avoided in 22.3% of patients at the expense of missing 3.0% of individuals with LNI. Alternative thresholds of 3%, 4%, and 5% yielded respective PLND avoidance rates of 60.4%, 71.0%, and 79.8% at the expense of missing 17.8%, 27.2%, and 36.6% of patients with LNI. NCCN cut-off recommendation was best satisfied with a threshold of <2.6%, at which PLND could be avoided in 13,234 patients (49.5%) versus missing 141 patients with LNI (11.2%). CONCLUSION: NCCN LNI nomogram remains accurate in contemporary patients. However, the 2% threshold appears to be too strict, since only 22.3% of PLNDs can be avoided, instead of the stipulated 47.7%. The optimal 2.6% threshold allows a higher rate of PLND avoidance (49.5%), at the cost of 11.2% missed instances of LNI, as recommended by NCCN guidelines. PATIENT SUMMARY. External validation in contemporary SEER prostate cancer patients showed that the NCCN nomogram remains accurate for predicting lymph node invasion and seems to be optimal at an alternative 2.6% threshold, with best ratio of avoided pelvic lymph node dissections (49.5%) and missed LNIs (11.2%), as recommended by NCCN guideline. Prostate 77:542-548, 2017. © 2017 Wiley Periodicals, Inc.

Dietary recommendations during and after cancer treatment: consistently inconsistent?

Recent data reveals that dietary factors may influence outcomes in patients undergoing cancer treatment. However, patient-centered information on dietary recommendations is limited. In this study, we assessed dietary recommendations for cancer patients during treatment and survivorship by evaluating the websites of all National Comprehensive Cancer Network (NCCN) member institutions. NCCN members were identified on www.nccn.org , and individual websites were reviewed for nutritional content. Recommendations were categorized by meal frequency, diet type, macronutrient content, and other specific recommendations. Twenty-one NCCN member institutions were identified. Only 4 sites (19%) provided nutritional guidelines. Half promoted a low-fat, high-carbohydrate diet recommending 5:1 and 7:1 ratios of carbohydrate to fat food types, and half promoted weight maintenance during treatment, endorsing a 1:1 ratio of carbohydrate to fat. One third of all NCCN sites (n = 7) had links to 9 external websites. Four external sites provided nutrition guidelines: half favored a low-fat, high-carbohydrate diet, and half favored high-caloric intake to maintain weight. Consistent online dietary recommendations are lacking for patients during and after cancer treatment. Given the lack of consensus on dietary recommendations, future research is warranted to develop evidenced-based guidelines that can be used by oncologists and patients alike.

The International Collaboration on Complementary Therapy Resources (ICCR): working together to improve online CAM information.

BACKGROUND: Use of the Internet to find health information is increasing dramatically but the quality of information, particularly on complementary and alternative medicine (CAM) is variable. The International Collaboration on Complementary Therapy Resources (ICCR) involves collaboration between the national CAM information centers in Australia, Denmark, Norway, the United Kingdom, and the United States, and a CAM information service in Germany. OBJECTIVES: The study objectives were to compare the services and areas of expertise offered by each of the national CAM information services, to explore common challenges encountered in practice, and to establish specific objectives for the collaboration. DESIGN: The workshop incorporated set templates for presentations, brainstorming, and analysis of notes to identify common themes. RESULTS: Differences and similarities between the various services were revealed. Common challenges were identified under the main themes of overall context, users and needs, content and processes. Based on these themes, it was possible to agree on a number of specific objectives. CONCLUSIONS: The member organizations of the ICCR serve a range of different audiences and have varied remits to fulfill. For the international collaboration to be effective, it was necessary to identify common challenges and to agree on specific objectives and potential ways of working together. Progress to date is also discussed together with plans for the future.

Complementary and alternative medicine and supportive care at leading cancer centers: a systematic analysis of websites.

BACKGROUND: With increasing frequency, patients with cancer and their family members are turning to the Internet to educate themselves about their disease and treatment options, including complementary and alternative medicine (CAM) and supportive care. However, very little is known about how national leading cancer centers represent these therapies via their websites. METHODS: Simulating the perspective of an information-seeking patient or family member, we performed a systematic analysis of the websites of 41 National Cancer Institute designated comprehensive cancer centers. Two researchers independently evaluated websites, recorded CAM information, and rated quality of the websites using a 4-item Likert scale (overall, information, presentation, and navigation) with Cronbach's alpha = 0.97. Rating was adequately correlated between the two raters (correlation coefficient 0.8). RESULTS: Of 41 centers, 12 (29%) did not have functional websites with regard to information related to CAM. The most common CAM approaches mentioned were: acupuncture (59%), meditation/nutrition/spiritual support/yoga (56% for each), massage therapy (54%), and music therapy (51%). Twenty-three (23; 56%) presented information on support groups, 19 (46%) on patient seminars, 18 (44%) on survivorship effort, and 17 (41%) on symptom management clinics. Twenty-nine (29) (71%) of these websites had a telephone number available, 22 (54%) mentioned at least one ongoing research opportunity, and 19 (46%) provided links to the National Center for Complementary and Alternative Medicine website. Median rating of the quality of websites was 50 of 100, with only 7 (17%) of centers receiving a composite score 80 (excellent) or better. CONCLUSIONS: While a growing number of leading cancer centers provide information about CAM and supportive oncology information for patients via their websites, the quality and ease of navigation of these sites remain highly variable. Effective development and redesign of many of the websites is needed to better inform and empower patients and families seeking CAM and supportive care information.

Assessing cancer treatment related information online: unintended retrieval of complementary and alternative medicine web sites.

The aims of this study were to determine the number of Complementary and Alternative Medicine (CAM) web sites retrieved form Korean search engines, and to evaluate the quality of online CAM content. We evaluated results retrieved by the use of the key word 'anticancer treatment' on six common search engines in Korea. Among a total of 651 web sites, 226 web sites (35%) related to CAM were identified. The quality and risk of these sites were assessed for 97 web sites after removing duplicate and dysfunctional web sites. We evaluated the quality of the sites using Sandvik score. Scores in this study varied between 5 and 12 points, with a maximum of 14 points. We categorized the risk score for each web site based on the following criteria: (1) the site discourages the use of conventional medicine (23%: 22/97); (2) the site discourages adherence to the advice of a clinician (15%:15/97); (3) the site either provides opinions and experiences, or factual details (26%: 25/97); and (4) the site provides commercial details (46%: 45/97). The most popular web sites in Korea that relate to CAM for cancer offer information of extremely variable quality. Clinicians should be aware of the risks of inaccurate online information and attempt to protect their patients from those.

Commonly cited website quality criteria are not effective at identifying inaccurate online information about breast cancer.

BACKGROUND: Consumers increasingly consult the Internet for breast cancer information. Concerned about accuracy, multiple organizations developed quality criteria for online content. However, the effectiveness of these tools is unknown. The authors determined whether existing quality criteria can identify inaccurate breast cancer information online. METHODS: The authors identified 343 unique webpages by using 15 breast cancer-related queries on 5 popular web search-engines. Each page was assessed for 15 quality criteria and 3 website characteristics, link type (sponsored or not), search engine used to find the page, and domain extension. Two clinician-reviewers independently assessed accuracy and topics covered. The authors then determined whether quality criteria, website characteristics, and topics were associated with the presence of inaccurate statements. RESULTS: The authors found 41 inaccurate statements on 18 webpages (5.2%). No quality criteria or website characteristic, singly or in combination, reliably identified inaccurate information. The total number of quality criteria met by a website accounted for a small fraction of the variability in the presence of inaccuracies (point biserial r=-0.128; df=341; P=.018; r2=0.016). However, webpages containing information on complementary and alternative medicine (CAM) were significantly more likely to contain inaccuracies compared with pages without CAM information (odds ratio [OR], 15.6; P<.001). CONCLUSIONS: Most breast cancer information that consumers are likely to encounter online is accurate. However, commonly cited quality criteria do not identify inaccurate information. Webpages that contain information about CAM are relatively likely to contain inaccurate statements. Consumers searching for health information online should still consult a clinician before taking action.

Consumer e-health education in HIV/AIDS: a pilot study of a web-based video workshop.

BACKGROUND: Members of the HIV/AIDS community are known to use web-based tools to support learning about treatment issues. Initial research indicated components such as message forums or web-based documentation were effectively used by persons with HIV/AIDS. Video has also shown promise as a technology to aid consumer health education. However, no research has been published thus far investigating the impact of web-based environments combining these components in an educational workshop format. METHODS: In this qualitative study HIV/AIDS community members provided feedback on an integrated web-based consumer health education environment. Participants were recruited through organizations that serve the HIV/AIDS community located in Toronto, Canada. Demographics, data on Internet use, including messages exchanged in the study environment were collected. A group interview provided feedback on usability of the study environment, preferences for information formats, use of the message forum, and other sources for learning about treatment information. RESULTS: In this pilot study analysis of the posted messages did not demonstrate use for learning of the workshop content. Participants did not generally find the environment of value for learning about treatment information. However, participants did share how they were meeting these needs. It was indicated that a combination of resources are being used to find and discuss treatment information, including in-person sources. CONCLUSION: More research on the ways in which treatment information needs are being met by HIV/AIDS community members and how technology fits in this process is necessary before investing large amounts of money into web-based interventions. Although this study had a limited number of participants, the findings were unexpected and, therefore, of interest to those who intend to implement online consumer health education initiatives or interventions.

Breast cancer: patient information needs reflected in English and German web sites.

Individual belief and knowledge about cancer were shown to influence coping and compliance of patients. Supposing that the Internet information both has impact on patients and reflects patients' information needs, breast cancer web sites in English and German language were evaluated to assess the information quality and were compared with each other to identify intercultural differences. Search engines returned 10 616 hits related to breast cancer. Of these, 4590 relevant hits were analysed. In all, 1888 web pages belonged to 132 English-language web sites and 2702 to 65 German-language web sites. Results showed that palliative therapy (4.5 vs 16.7%; P=0.004), alternative medicine (18.2 vs 46.2%; P<0.001), and disease-related information (prognosis, cancer aftercare, self-help groups, and epidemiology) were significantly more often found on German-language web sites. Therapy-related information (including the side effects of therapy and new studies) was significantly more often given by English-language web sites: for example, details about surgery, chemotherapy, radiotherapy, hormone therapy, immune therapy, and stem cell transplantation. In conclusion, our results have implications for patient education by physicians and may help to improve patient support by tailoring information, considering the weak points in information provision by web sites and intercultural differences in patient needs.

Inter-observer agreement for quality measures applied to online health information.

Many quality criteria have been developed to rate the quality of online health information. However, few instruments have been validated for inter-observer reliability. Therefore, we assessed the degree to which two raters agree upon the presence or absence of information based on 22 popularly cited quality criteria on a sample of 21 complementary and alternative medicine websites. Our preliminary analysis showed a poor inter-rater agreement on 10 out of the 22 quality criteria. Therefore, we created operational definitions for each of the criteria, decreased the allowed choices and defined a location to look for the information. As a result 15 out of the 22 quality criteria had a kappa >0.6. We conclude that even with precise definitions some commonly used quality criteria to assess the quality of health information online cannot be reliably assessed. However, inter-rater agreement can be improved by providing precise operational definitions.

Assessing websites on complementary and alternative medicine for cancer.

BACKGROUND: Many cancer patients search the World Wide Web for information on complementary and alternative medicine. The aim of this study was to evaluate the quality of such information and identify the treatments most frequently discussed. Materials and methods We used a pre-tested search strategy to identify the websites that are most likely to be used by cancer patients and assessed them according to pre-defined criteria. RESULTS: Thirty-two websites were included in this analysis. The quality of these sites was scored on a point system and varied between 8 and 14 points with a maximum of 14. Most sites issued recommendations for a plethora of treatments, which are typically not supported by sound scientific evidence. Three sites had the potential for harming patients through the advice issued. The most frequently discussed therapies were herbal medicines, diets and mind-body therapies. CONCLUSION: The most popular websites on complementary and alternative medicine for cancer offer information of extremely variable quality. Many endorse unproven therapies and some are outright dangerous.

Elaborating patient information with patients themselves: lessons from a cancer treatment focus group.

OBJECTIVE: To assess the significance of patients' input in the elaboration of a patient information booklet. DESIGN: Qualitative study based on focus group discussions. SETTING: Centre Léon Bérard, a comprehensive cancer centre in the Rhône-Alpes region of France. PARTICIPANTS: (1) A multidisciplinary working group (oncologists, health economists and one clinical psychologist) wrote up initial information documents concerning possible breast cancer treatments. (2) A focus group comprised of patients with a history of breast cancer and healthy volunteers discussed their reactions to these documents. MAIN OUTCOME MEASURE: Analysis of the focus group's reactions according to key themes predetermined by the working group and related themes introduced by the focus group itself. RESULTS: The focus group proposed numerous, significant modifications to answer requests for additional information, clarification and better readability in the information booklets. DISCUSSION/CONCLUSIONS: This qualitative analysis showed a significant input of patients' perspective in the elaboration of patient information. It is also an additional support to the feasibility and appropriateness of the focus group technique. The next stage will be to test whether information documents produced here conform to the needs of patients currently undergoing treatment.

Evaluation of an Internet-based database on infectious disorders during pregnancy: INFPREG.

OBJECTIVE: To evaluate the use of an Internet-based information system on infectious disorders (INFPREG) in antenatal care in Sweden. METHODS: A postal questionnaire was sent to all antenatal clinics in Sweden in 2000 (n = 515) and 2002 (n = 503). The questionnaire consisted of sections covering use of computers, availability of Internet connections and the use of INFPREG in patient care. RESULTS: We received 404 completed questionnaires in 2000 and 501 in 2002. In 2000, 81% of the midwives had access to computers at their antenatal clinics, and this number had increased to 93% in 2002. Sixty-eight percent and 88% in 2000 and 2002, respectively, had computers with an Internet connection. Of the responding midwives, 74% in 2000 and 84% in 2002 had received information concerning INFPREG. In 2000, 29% of the midwives had visited INFPREG and this figure had increased to 58% in 2002. Of the midwives that had used INFPREG, 67% in 2000 and 81% in 2002 reported that the information obtained from the site was implemented in the patient care. Of the responders, 45% in 2000 and 43% in 2002 claimed that they needed more information on how to use INFPREG. CONCLUSIONS: A majority of midwives at antenatal clinics in Sweden have access to the Internet and are confident in using an Internet-based knowledge center on infectious disorders in pregnancy. The present study indicates a rapid acceptance among health care providers in antenatal care in Sweden of this new method for dissemination of information and guidelines. However, many midwives still want more information and knowledge on how to use an Internet-based information system.