Electronic health information and long term conditions

This article discusses the increasing availability of health-related information, and the impact that this can have for people with long-term conditions’ expectations of healthcare providers. The article suggests a framework for decision making about the role that healthcare staff should play in the information searching, retrieval, and synthesis activities which people with long-term conditions engage in. The framework is based on a series of decisions related to: perceptions of ownership of long-term conditions; whether intermediatory or apomediatory approaches to information management are deemed to be most appropriate; and, as a result of these considerations, what, if any, place healthcare staff should take in the process of patients searching or and interpreting information about long-term health needs. These decisions will enable healthcare providers to plan services based on clear decision pathways, and to clarify to all concerned what are deemed to be reasonable expectations of health service provision

Welcome to PathoGenetics

Disease gene identification has made enormous strides in the past twenty years through functional, positional and candidate gene approaches, and more recently by the exploitation of genome-wide strategies. However, although pathogenic mutations in over 2000 genes have been identified as causative of human diseases, much less is known about the relationship between the molecular defects and mechanisms that lead to disease pathology and symptoms. Recent advances in diverse fields such as genomics, proteomics, cell biology, as well as studies on transgenic animals have greatly accelerated our understanding of the biochemical and cellular basis of many diseases but much still remains to be discovered. The current challenge is to understand the molecular and metabolic pathways by which a particular pathogenic variation leads to a specific phenotype. The study of abnormal conditions is of crucial importance for the understanding of normal physiology and often provides us with the rationale for the development of novel therapeutic strategies

A detailed analysis of online pharmacy characteristics to inform safe usage by patients

Background: Evidence suggests that consumers potentially put themselves at risk when purchasing medicines on-line. Whilst logos provided by regulators may provide some level of reassurance there may be other indicators which could be used by consumers to identify those websites which may be safely used. Objectives: Identify characteristics of on-line pharmacies which are related to whether websites are regulated or non-regulated and those characteristics which could be used by patients to increase the likelihood of accessing regulated sites. Setting: Online pharmacies which supply diazepam, fluoxetine and simvastatin. Methods: Using piloted search terms via Google and Yahoo search engines, identified websites were screened for regulatory status, adherence to regulatory standards, administrative requirements, clinical assessment requirements and additional details deemed to be of relevance to a user. Characteristics of regulated and non-regulated (defined as those with an absence of a correctly linked regulatory logo) websites were compared to identify differences which could be used to improve patient safety. Main outcome measure: Regulatory status, adherence to regulatory standards, quality of information provision, barriers to medicines access. Results: 113 websites sold diazepam, fluoxetine and simvastatin; were identified within the first 100 results. Less than quarter were found to be regulated online pharmacies. 80 websites were willing to sell the medication without a prescription. The unregulated internet pharmacy websites (defined as those with an absence of a correctly linked regulatory logo) were found to adhere more closely to the clinical criteria, were less significantly likely to disclose a contact name and address, telephone number of the pharmacy or demand a prescription prior to sale (P\0.05, Fisher’s Exact). Conclusions: The three prescription-only medicines which are liable to abuse, have potentially serious interactions and require counselling to ensure patient safety are readily available via the internet. When purchasing medicines via this route UK consumers should be made aware of the importance of regulatory logos and additionally should ensure that the seller can be meaningfully contacted by the contact details provided. The provision of clinical information should not be used alone as an indication of the seller’s provenance

Seal of transparency heritage in the CISMeF quality-controlled health gateway

BACKGROUND: It is an absolute necessity to continually assess the quality of health information on the Internet. Quality-controlled subject gateways are Internet services which apply a selected set of targeted measures to support systematic resource discovery. METHODS: The CISMeF health gateway became a contributor to the MedCIRCLE project to evaluate 270 health information providers. The transparency heritage consists of using the evaluation performed on providers that are referenced in the CISMeF catalogue for evaluating the documents they publish, thus passing on the transparency label from the publishers to their documents. RESULTS: Each site rated in CISMeF has a record in the CISMeF database that generates an RDF into HTML file. The search tool Doc'CISMeF displays information originating from every publisher evaluated with a specific MedCIRCLE button, which is linked to the MedCIRCLE central repository. Starting with 270 websites, this trust heritage has led to 6,480 evaluated resources in CISMeF (49.8% of the 13,012 resources included in CISMeF). CONCLUSION: With the MedCIRCLE project and transparency heritage, CISMeF became an explicit third party

Impact of COVID-19 Outbreak on Healthcare Workers in Italy: Results from a National E-Survey

Italy has been the first-hit European country to face the outbreak of coronavirus disease 2019 (COVID-19). Aim of this survey was to assess in depth the impact of the outbreak on healthcare workers (HCW). A 40-item online survey was disseminated via social media inviting Italian HCW, with questions exploring demographics, health status and work environment of respondents. A total of 527 were invited to take part in March 2020, of whom 74% (n = 388) responded to the survey. Of these, 235 (61%) were women. HCW were mostly physicians (74%), from high-prevalence regions (52%). 25% experienced typical symptoms during the last 14 days prior to survey completion, with only 45% of them being tested for COVID-19. Among the tested population, 18 (18%) resulted positive for COVID-19, with 33% being asymptomatic. Only 22% of HCW considered personal protective equipment adequate for quality and quantity. Females and respondents working in high-risk sectors were more likely to rate psychological support as useful (OR, 1.78 [CI 95% 1.14–2.78] P = 0.012, and 2.02 [1.12–3.65] P = 0.020, respectively) and workload as increased (mean increase, 0.38 [0.06–0.69] P = 0.018; and 0.54 [0.16–0.92] P = 0.005, respectively). The insights from this survey may help authorities in countries where COVID-19 epidemic has not yet broken out. Management strategies should be promptly undertaken in order to enhance safety and optimise resource allocation

Cross-sectional survey of users of internet depression communities

Background: Internet-based depression communities provide a forum for individuals to communicate and share information and ideas. There has been little research into the health status and other characteristics of users of these communities. Methods: Online cross-sectional survey of Internet depression communities to identify depressive morbidity among users of Internet depression communities in six European countries; to investigate whether users were in contact with health services and receiving treatment; and to identify user perceived effects of the communities. Results: Major depression was highly prevalent among respondents (varying by country from 40% to 64%). Forty-nine percent of users meeting criteria for major depression were not receiving treatment, and 35% had no consultation with health services in the previous year. Thirty-six percent of repeat community users who had consulted a health professional in the previous year felt that the Internet community had been an important factor in deciding to seek professional help. Conclusions: There are high levels of untreated and undiagnosed depression in users of Internet depression communities. This group represents a target for intervention. Internet communities can provide information and support for stigmatizing conditions that inhibit more traditional modes of information seeking

Health Advice from Internet Discussion Forums: How Bad Is Dangerous?

Background: Concerns over online health information–seeking behavior point to the potential harm incorrect, incomplete, or biased information may cause. However, systematic reviews of health information have found few examples of documented harm that can be directly attributed to poor quality information found online. Objective: The aim of this study was to improve our understanding of the quality and quality characteristics of information found in online discussion forum websites so that their likely value as a peer-to-peer health information–sharing platform could be assessed. Methods: A total of 25 health discussion threads were selected across 3 websites (Reddit, Mumsnet, and Patient) covering 3 health conditions (human immunodeficiency virus [HIV], diabetes, and chickenpox). Assessors were asked to rate information found in the discussion threads according to 5 criteria: accuracy, completeness, how sensible the replies were, how they thought the questioner would act, and how useful they thought the questioner would find the replies. Results: In all, 78 fully completed assessments were returned by 17 individuals (8 were qualified medical doctors, 9 were not). When the ratings awarded in the assessments were analyzed, 25 of the assessments placed the discussion threads in the highest possible score band rating them between 5 and 10 overall, 38 rated them between 11 and 15, 12 rated them between 16 and 20, and 3 placed the discussion thread they assessed in the lowest rating band (21-25). This suggests that health threads on Internet discussion forum websites are more likely than not (by a factor of 4:1) to contain information of high or reasonably high quality. Extremely poor information is rare; the lowest available assessment rating was awarded only 11 times out of a possible 353, whereas the highest was awarded 54 times. Only 3 of 78 fully completed assessments rated a discussion thread in the lowest possible overall band of 21 to 25, whereas 25 of 78 rated it in the highest of 5 to 10. Quality assessments differed depending on the health condition (chickenpox appeared 17 times in the 20 lowest-rated threads, HIV twice, and diabetes once). Although assessors tended to agree on which discussion threads contained good quality information, what constituted poor quality information appeared to be more subjective. Conclusions: Most of the information assessed in this study was considered by qualified medical doctors and nonmedically qualified respondents to be of reasonably good quality. Although a small amount of information was assessed as poor, not all respondents agreed that the original questioner would have been led to act inappropriately based on the information presented. This suggests that discussion forum websites may be a useful platform through which people can ask health-related questions and receive answers of acceptable quality

Advice for Health Care Professionals and Users: An Evaluation of Websites for Perinatal Anxiety

Background: Many websites are available with information and resources for perinatal anxiety; however, there is limited research on the quality and content of these sites. Objective: This study aims to identify what sites are available on perinatal anxiety, identify any information and therapeutic advice given, and review its accuracy and website design. Methods: We conducted an evaluation of websites for perinatal anxiety. Eligible websites (N=50) were evaluated for accuracy of information, resources for mothers, website quality, and readability. Results: Information was often incomplete and focused on symptoms rather than risk factors or impact of untreated perinatal anxiety. Websites often had information on treatment (46/50, 92%), but much less on screening (19/50, 38%). Most sites provided at least some resources to support mothers (49/50, 98%), but active, guided support was infrequent (25/50, 50%). Website quality was extremely variable and mostly difficult to read (42/50, 84%). Conclusions: This study recommends the top 4 websites on perinatal anxiety for health care professionals and users. There is a need for websites to be developed that provide accurate, evidence-based information that women can relate to with quality support resources. Furthermore, these sites should be easy to use and readable

Use of the NHS Choices website for primary care consultations: results from online and general practice surveys

OBJECTIVES: To determine the effect of using the NHS Choices website on primary care consultations in England and Wales. We examined the hypothesis that using NHS Choices may reduce the frequency of primary care consultations among young, healthy users. DESIGN: Two cross-sectional surveys of NHS Choices users. SETTING: Survey of NHS Choices users using an online pop-up questionnaire on the NHS Choices website and a snapshot survey of patients in six general practices in London. PARTICIPANTS: NHS Choices website users and general practice patients. MAIN OUTCOME MEASURES: For both surveys, we measured the proportion of people using NHS Choices when considering whether to consult their GP practice and on subsequent frequency of primary care consultations. RESULTS: Around 59% (n = 1559) of online and 8% (n = 125) of general practice survey respondents reported using NHS Choices in relation to their use of primary care services. Among these, 33% (n = 515) of online and 18% (n = 23) of general practice respondents reported reduced primary care consultations as a result of using NHS Choices. We estimated the equivalent capacity savings in primary care from reduced consultations as a result of using NHS Choices to be approximately £94 million per year. CONCLUSIONS: NHS Choices has been shown to alter healthcare-seeking behaviour, attitudes and knowledge among its users. Using NHS Choices results in reduced demand for primary care consultations among young, healthy users for whom reduced health service use is likely to be appropriate. Reducing potentially avoidable consultations can result in considerable capacity savings in UK primary care