Patients' Perspectives About Factors Affecting Their Use of Electronic Personal Health Records in England: Qualitative Analysis.

BACKGROUND: General practices (GPs) in England have recently introduced a nationwide electronic personal health record (ePHR) system called Patient Online or GP online services, which allows patients to view parts of their medical records, book appointments, and request prescription refills. Although this system is free of charge, its adoption rates are low. To improve patients' adoption and implementation success of the system, it is important to understand the factors affecting their use of the system. OBJECTIVE: The aim of this study is to explore patients' perspectives of factors affecting their use of ePHRs in England. METHODS: A cross-sectional survey was carried out between August 21 and September 26, 2017. A questionnaire was used in this survey to collect mainly quantitative data through closed-ended questions in addition to qualitative data through an open-ended question. A convenience sample was recruited in 4 GPs in West Yorkshire, England. Given that the quantitative data were analyzed in a previous study, we analyzed the qualitative data using thematic analysis. RESULTS: Of the 800 eligible patients invited to participate in the survey, 624 (78.0%) returned a fully completed questionnaire. Of those returned questionnaires, the open-ended question was answered by 136/624 (21.8%) participants. A total of 2 meta-themes emerged from participants' responses. The first meta-theme comprises 5 themes about why patients do not use Patient Online: concerns about using Patient Online, lack of awareness of Patient Online, challenges regarding internet and computers, perceived characteristics of nonusers, and preference for personal contact. The second meta-theme contains 1 theme about why patients use Patient Online: encouraging features of Patient Online. CONCLUSIONS: The challenges and concerns that impede the use of Patient Online seem to be of greater importance than the facilitators that encourage its use. There are practical considerations that, if incorporated into the system, are likely to improve its adoption rate: Patient Online should be useful, easy to use, secure, and easy to access. Different channels should be used to increase the awareness of the system, and GPs should ease registration with the system and provide manuals, training sessions, and technical support. More research is needed to assess the effect of the new factors found in this study (eg, lack of trust, difficulty registering with Patient Online) and factors affecting the continuing use of the system.

A Web-Based and Mobile Health Social Support Intervention to Promote Adherence to Inhaled Asthma Medications: Randomized Controlled Trial.

BACKGROUND: Online communities hold great potential as interventions for health, particularly for the management of chronic illness. The social support that online communities can provide has been associated with positive treatment outcomes, including medication adherence. There are few studies that have attempted to assess whether membership of an online community improves health outcomes using rigorous designs. OBJECTIVE: Our objective was to conduct a rigorous proof-of-concept randomized controlled trial of an online community intervention for improving adherence to asthma medicine. METHODS: This 9-week intervention included a sample of asthmatic adults from the United Kingdom who were prescribed an inhaled corticosteroid preventer. Participants were recruited via email and randomized to either an "online community" or "no online community" (diary) condition. After each instance of preventer use, participants (N=216) were required to report the number of doses of medication taken in a short post. Those randomized to the online community condition (n=99) could read the posts of other community members, reply, and create their own posts. Participants randomized to the no online community condition (n=117) also posted their medication use, but could not read others' posts. The main outcome measures were self-reported medication adherence at baseline and follow-up (9 weeks postbaseline) and an objective measure of adherence to the intervention (visits to site). RESULTS: In all, 103 participants completed the study (intervention: 37.8%, 39/99; control: 62.2%, 64/117). MANCOVA of self-reported adherence to asthma preventer medicine at follow-up was not significantly different between conditions in either intention-to-treat (P=.92) or per-protocol (P=.68) analysis. Site use was generally higher in the control compared to intervention conditions. CONCLUSIONS: Joining an online community did not improve adherence to preventer medication for asthma patients. Without the encouragement of greater community support or more components to sustain engagement over time, the current findings do not support the use of an online community to improve adherence. CLINICALTRIAL: International Standard Randomized Controlled Trial Number (ISRCTN): 29399269; http://www.isrctn.com/ISRCTN29399269/29399269 (Archived by WebCite at http://www.webcitation.org/6fUbEuVoT).

Combined verbal and numerical expressions increase perceived risk of medicine side-effects: a randomized controlled trial of EMA recommendations.

BACKGROUND: The study evaluated European Medicines Agency (EMA) recommendations on communicating frequency information on side-effect risk. METHODS: The study used a 2 × 2 factorial trial, with random allocation of information about 10 side-effects of paclitaxel (Taxol) expressed using one of four formats. Recruitment was via the CancerHelpUK website. Information was conveyed using numerical frequency bands (e.g. 'may affect up to 1 in 10 people') or combined verbal terms and numerical bands (e.g. 'common: may affect up to 1 in 10 people'); in addition, the risk qualifier verb was manipulated, with risks expressed either as 'will affect…' or 'may affect…'. Participants then made six side-effect frequency estimates indicated their satisfaction with the information and evaluated the side-effects: how bad; how likely; how risky to health; and their influence on taking paclitaxel. RESULTS: The sample comprised 339 people, of whom 37.5% had cancer. The combined verbal and numerical risk expressions resulted in higher estimates of side-effects, four of which reached statistical significance (P < 0.05), and participants also said that side-effects would be more likely. Use of 'may affect' or 'will affect' did not result in differences in any estimates. CONCLUSIONS: This is the first evaluation of the full range of combined verbal and numerical risk expressions recommended in EMA guidance; it demonstrates that they can lead to significant risk overestimations when compared to numerical frequency bands alone. The EMA should consider revising its guidance. Government agencies and professional bodies should be cautious about recommendations for risk communication in the absence of empirical evidence.

Optic flow asymmetries bias high-speed steering along roads.

How do animals and insects use visual information to move through the world successfully? Optic flow, the pattern of motion at the eye, is a powerful source of information about self-motion. Insects and humans are sensitive to the global pattern of optic flow and try to maintain flow symmetry when flying or walking. The environments humans encounter, however, often contain demarcated paths that constrain future trajectories (e.g., roads), and steering has been successfully modeled using only road edge information. Here we examine whether flow asymmetries from a textured ground plane influences humans steering along demarcated paths. Using a virtual reality simulator we observed that different textures on either side of the path caused predictable biases to steering trajectories, consistent with participants reducing flow asymmetries. We also generated conditions where one textured region had no flow (either the texture was removed or the textured region was static). Despite the presence of visible path information, participants were biased toward the no-flow region consistent with reducing flow asymmetries. We conclude that optic flow asymmetries can lead to biased locomotor steering even when traveling along demarcated paths.

The role of gaze and road edge information during high-speed locomotion.

Robust control of skilled actions requires the flexible combination of multiple sources of information. Here we examined the role of gaze during high-speed locomotor steering and in particular the role of feedback from the visible road edges. Participants were required to maintain one of three lateral positions on the road when one or both edges were degraded (either by fading or removing them). Steering became increasingly impaired as road edge information was degraded, with gaze being predominantly directed toward the required road position. When either of the road edges were removed, we observed systematic shifts in steering and gaze direction dependent upon both the required road position and the visible edge. A second experiment required fixation on the road center or beyond the road edges. The results showed that the direction of gaze led to predictable steering biases, which increased as road edge information became degraded. A new steering model demonstrates that the direction of gaze and both road edges influence steering in a manner consistent with the flexible weighted combination of near road feedback information and prospective gaze information.

What effect does a cancer diagnosis have on the educational engagement and school life of teenagers? A systematic review.

OBJECTIVES: A diagnosis of cancer during the teenage years arrives at an important stage of development, where issues of normality, identity and independence are crucial. Education provides opportunity for peer contact, achievement and development for teenagers. This systematic review examined the impact of a diagnosis of cancer on the educational engagement and school life of teenagers. METHOD: Five electronic databases were searched, returning a total of 3209 articles. Inclusion criteria were broad to allow for the range of literature within this area. Following screening, 22 articles (inclusive of both quantitative and qualitative methodologies) were retained and subjected to independent review and quality assessment. RESULTS: Key areas involved in the impact of a cancer diagnosis on teenagers' educational engagement include school attendance, reintegration, peer relationships and long-term effects on education and employment. CONCLUSION: School absences are a concern for teenagers, but do not necessarily lead to a reduction in educational and vocational attainment. It is important to involve health care and education professionals, as well as parents and teenagers themselves, in school reintegration if it is to be successful. Peer groups and body image are two areas that could mediate education engagement for teenagers. Further research needs to be undertaken to determine the overall impact of successfully maintaining education engagement specifically for teenagers, the role that peer groups play in this process and how education engagement contributes to the overall coping and well-being of teenage cancer patients.

The effect of numeracy on the comprehension of information about medicines in users of a patient information website.

OBJECTIVE: To investigate the relationship between numeracy and the accuracy of side effect risk estimation following the presentation of information about a medicine via the Cancer Research UK (CR-UK) patient information website. METHODS: 591 website users were presented with information in different formats about the risks of side effects from taking tamoxifen. Participants estimated the risk of each side effect, provided other subjective ratings about the information and completed a numeracy task. RESULTS: Regardless of presentation format, numeracy was correlated with the accuracy of three side effect risk estimates. People with cancer and tamoxifen users showed stronger correlations for all side effect estimates. In addition, numeracy was positively related to the perceived influence of the information on the decision to take the medicine and was negatively related to ratings of satisfaction with the information. CONCLUSION: People with a lower numeracy level make larger errors in interpreting medicines side effect risk information. PRACTICE IMPLICATIONS: Pharmacists, other health professionals and patient information websites should ensure they provide clear explanations of risk, particularly to people with low numeracy, and assess their understanding of those explanations. Future research into risk communication should take account of numeracy level, to investigate the impact of different formats.

Perceived risk of tamoxifen side effects: a study of the use of absolute frequencies or frequency bands, with or without verbal descriptors.

OBJECTIVE: To investigate the effectiveness of presenting medicine side effect risk information in different forms, including that proposed by UK guidelines [[1] Medicines and Healthcare products Regulatory Agency. Always read the leaflet-Getting the best information with every medicine. (Report of the Committee on Safety of Medicines Working Group on Patient Information). London: The Stationery Office, 2005.]. METHODS: 134 Cancer Research UK (CRUK) website users were recruited via a 'pop-up'. Using a 2x2 factorial design, participants were randomly allocated to one of four conditions and asked to: imagine they had to take tamoxifen, estimate the risks of 4 side effects, and indicate a presentation mode preference. RESULTS: Those presented with absolute frequencies demonstrated greater accuracy in estimating 2 of 4 side effects, and of any side effect occurring, than those presented with frequency bands. Those presented with combined descriptors were more accurate at estimating the risk of pulmonary embolism than those presented with numeric descriptors only. CONCLUSION: Absolute frequencies outperform frequency bands when presenting side effect risk information. However, presenting such exact frequencies for every side effect may be much less digestible than all side effects listed under 5 frequency bands. Combined numerical and verbal descriptors may be better than numeric only descriptors when describing infrequent side effects. PRACTICE IMPLICATIONS: Information about side effects should be presented in ways that patients prefer, and which result in most accurate risk estimates.

Communicating the risk of side effects to patients: an evaluation of UK regulatory recommendations.

BACKGROUND: All licensed medicines in the European Union must be provided with a Patient Information Leaflet that includes a list of all known side effects. Among patients who read the leaflet, the side effects section is the most often read. A UK government regulatory publication recommends providing medicine side effect risk information in a combined format, using verbal descriptors accompanied by numerical information. OBJECTIVES: This study, with users of an existing popular patient information website, investigates the effectiveness of presenting medicine side effect risk information in different forms. DESIGN: Participants were randomly allocated to one of the three formats for representing risk information (verbal descriptors, e.g. 'common'; absolute frequencies, e.g. 'less than 1 in 10 people'; and a combination of verbal descriptors and frequency bands, e.g. 'common (affects less than 1 in 10 people)'. METHODS: Participants (n = 187) were recruited from users of the Cancer Research UK patient information website. They were asked to imagine that they had to take a cancer treatment (tamoxifen), estimate the risks of four side effects occurring, and complete Likert scales relating to their satisfaction with the information supplied and perceived likelihood of various outcomes. RESULTS: Those in the absolute frequency format demonstrated greater accuracy in estimating the likelihood of having two of four side effects than the other two formats. They were also more accurate at estimating the likelihood of themselves or the average person having any side effect from taking tamoxifen. Participants in the absolute frequency format rated the risk to health from tamoxifen as lower than those in the other two formats, were more satisfied with the information they received than those in the verbal format, and felt there would be less impact of the information on tamoxifen use than those in the combined format. CONCLUSIONS: These findings fail to confirm that the recommended use of combined descriptors for medicine side effects is unequivocally superior to absolute frequency alone. They also add weight to the growing body of research highlighting the deficiencies in using verbal descriptors for conveying side effect risk, and the strength of using absolute frequency descriptors.