Creation of a new evaluation benchmark for information retrieval targeting patient information needs

Searching for health advice on the web is becoming increasingly common. Because of the great importance of this activity for patients and clinicians and the effect that incorrect information may have on health outcomes, it is critical to present relevant and valuable information to a searcher. Previous evaluation campaigns on health information retrieval (IR) have provided benchmarks that have been widely used to improve health IR and record these improvements. However, in general these benchmarks have targeted the specialised information needs of physicians and other healthcare workers. In this paper, we describe the development of a new collection for evaluation of effectiveness in IR seeking to satisfy the health information needs of patients. Our methodology features a novel way to create statements of patients’ information needs using realistic short queries associated with patient discharge summaries, which provide details of patient disorders. We adopt a scenario where the patient then creates a query to seek information relating to these disorders. Thus, discharge summaries provide us with a means to create contextually driven search statements, since they may include details on the stage of the disease, family history etc. The collection will be used for the first time as part of the ShARe/-CLEF 2013 eHealth Evaluation Lab, which focuses on natural language processing and IR for clinical care.

What patient information allows us to make accurate predictions of outcome?

Only some of the information contained in a medical record will be useful to the prediction of patient outcome. We describe a novel method for selecting those outcome predictors which allow us to reliably discriminate between adverse and benign end results. Using the area under the receiver operating characteristic as a nonparametric measure of discrimination, we show how to calculate the maximum discrimination attainable with a given set of discrete valued features. This upper limit forms the basis of our feature selection algorithm. We use the algorithm to select features (from maternity records) relevant to the prediction of failure to progress in labour. The results of this analysis motivate investigation of those predictors of failure to progress relevant to parous and nulliparous sub-populations.

Hydrogel-Forming Microneedle Arrays Can Be Effectively Inserted in Skin by Self-Application: A Pilot Study Centred on Pharmacist Intervention and a Patient Information Leaflet

Purpose: To investigate, for the first time, the influence of pharmacist intervention and the use of a patient information leaflet on self-application of hydrogel-forming microneedle arrays by human volunteers without the aid of an applicator device.
Methods: A patient information leaflet was drafted and pharmacist counselling strategy devised. Twenty human volunteers applied 11 × 11 arrays of 400 μm hydrogel-forming microneedle arrays to their own skin following the instructions provided. Skin barrier function disruption was assessed using transepidermal water loss measurements and optical coherence tomography and results compared to those obtained when more experienced researchers applied the microneedles to the volunteers or themselves.
Results: Volunteer self-application of the 400 μm microneedle design resulted in an approximately 30% increase in skin transepidermal water loss, which was not significantly different from that seen with self-application by the more experienced researchers or application to the volunteers. Use of optical coherence tomography showed that self-application of microneedles of the same density (400 μm, 600 μm and 900 μm) led to percentage penetration depths of approximately 75%, 70% and 60%, respectively, though the diameter of the micropores created remained quite constant at approximately 200 μm. Transepidermal water loss progressively increased with increasing height of the applied microneedles and this data, like that for penetration depth, was consistent, regardless of applicant.
Conclusion: We have shown that hydrogel-forming microneedle arrays can be successfully and reproducibly applied by human volunteers given appropriate instruction. If these outcomes were able to be extrapolated to the general patient population, then use of bespoke MN applicator devices may not be necessary, thus possibly enhancing patient compliance.

Report on the 2014 UKONS Annual Conference Belfast, 14–15 November 2014: focus on living with and beyond cancer, patient information and support, and innovations in treatment and care

The UK Oncology Nursing Society’s (UKONS) annual conference focused on three major themes. These were ‘Living With and Beyond Cancer’, ‘Patient Information and Support’, and ‘Innovations in Treatment and Care’. It featured a wide range of presentations, industry satellites, exhibitions, poster discussions. and workshops. Presenters ranged from those eminent in their particular field to those gracing the speaker’s podium for the first time. The rich variety of presentations covered policy, cancer trends, clinical developments, care initiatives, personal development, and advances in practice. There was a strong emphasis on skills, knowledge, values, and attitudes, with the most junior and novice nurses mixing with experienced and highly esteemed practitioners.

The benefits of providing benefit information in a patient information leaflet

Objective: To examine the effects of providing two different types of written information about medicine benefits in a patient information leaflet (PIL). Setting: Participants were 358 adult volunteers from the general population recruited from a London railway station and central Reading. Method: The study used a controlled empirical methodology in which people were given a hypothetical, but realistic, scenario about visiting their doctor and being prescribed medication. They then read an information leaflet about the medicine that contained neither, one, or both benefit statements, and finally completed a number of Likert rating scales. Outcome measures included perceived satisfaction and helpfulness of the information, effectiveness and appropriateness of the medicine, benefit and risk to health, and intention to comply. Key findings: Both types of benefit information led to significantly higher ratings on all of the measures taken. Conclusions: Provision of a relatively short ‘benefit’ statement can significantly improve people’s judgements and intention to take a medicine. The findings are important and timely as the European Union is currently considering reviewing their regulations to allow for the inclusion of limited non-promotional benefit information in PILs.

[The deaf patient--information for a barrier-free conversation with patients in dentistry]

There are about 650,000 people with hearing problems in Switzerland, 10,000 of whom use sign language. About 100,000 people are hard of hearing. Deaf patients require special treatment in the dental office as they have specific communication needs. This community, like many other minority groups, has a sign language and a culture of its own. To prevent misunderstandings it is therefore very important to provide solutions for an enhanced communication. However, guidelines for the communication with deaf dental patients are still missing. Successful communication between deaf patients and dentist is essential for effective care. This paper is concerned with providing background information and introducing recommendations for unrestricted dentist-patient communication. The aim of this article is to improve dentists' knowledge of the appropriate communication with this patient group.

Patient information leaflets: informing or frightening? A focus group study exploring patients' emotional reactions and subsequent behavior towards package leaflets of commonly prescribed medications in family practices.

BACKGROUND The purpose of patient information leaflets (PILs) is to inform patients about the administration, precautions and potential side effects of their prescribed medication. Despite European Commission guidelines aiming at increasing readability and comprehension of PILs little is known about the potential risk information has on patients. This article explores patients' reactions and subsequent behavior towards risk information conveyed in PILs of commonly prescribed drugs by general practitioners (GPs) for the treatment of Type 2 diabetes, hypertension or hypercholesterolemia; the most frequent cause for consultations in family practices in Germany. METHODS We conducted six focus groups comprising 35 patients which were recruited in GP practices. Transcripts were read and coded for themes; categories were created by abstracting data and further refined into a coding framework. RESULTS Three interrelated categories are presented: (i) The vast amount of side effects and drug interactions commonly described in PILs provoke various emotional reactions in patients which (ii) lead to specific patient behavior of which (iii) consulting the GP for assistance is among the most common. Findings show that current description of potential risk information caused feelings of fear and anxiety in the reader resulting in undesirable behavioral reactions. CONCLUSIONS Future PILs need to convey potential risk information in a language that is less frightening while retaining the information content required to make informed decisions about the prescribed medication. Thus, during the production process greater emphasis needs to be placed on testing the degree of emotional arousal provoked in patients when reading risk information to allow them to undertake a benefit-risk-assessment of their medication that is based on rational rather than emotional (fearful) reactions.

How was patient empowerment portrayed in information leaflets describing the community pharmacy Medicines Use Review service in the UK?

Objective The Medicines Use Review (MUR) community pharmacy service was introduced in 2005 to enhance patient empowerment but the service has not been taken up as widely as expected. We investigated the depiction of the patient–pharmacist power relationship within MUR patient information leaflets. Methods We identified 11 MUR leaflets including the official Department of Health MUR booklet and through discourse analysis examined the way language and imagery had been used to symbolise and give meaning to the MUR service, especially the portrayal of the patient–pharmacist interactions and the implied power relations. Results A variety of terminology was used to describe the MUR, a service that aimed ultimately to produce more informed patients through the information imparted by knowledgeable, skilled pharmacists. Conclusion The educational role of the MUR overshadowed the intended patient empowerment that would take place with a true concordance-centred approach. Although patient empowerment was implied, this was within the boundaries of the biomedical model with the pharmacist as the expert provider of medicines information. Practice implications If patient empowerment is to be conveyed this needs to be communicated to patients through consistent use of language and imagery that portrays the inclusivity intended.

Information och undervisning vid omvårdnad av patient med hjärt- kärlsjukdomar : En Litteraturstudie

Syfte: Syftet med denna litteraturstudie var att undersöka hur information når fram till patienter med hjärt-kärlsjukdomar. Metod: Systematisk litteraturstudie. 15 artiklar, både kvalitativa och kvantitativa, granskades till resultatsdelen efter sökningar genom databaserna Academic Search Elite, CINAHL och PubMed, samt sökmotorn Elin@Dalarna. Artiklarna som använts är från 2002 och framåt. De hade en kvalitet som var antingen medel eller hög efter en granskning med hjälp av granskningsmallar för kvalitetsbedömning.Huvudresultat: Det fanns behov för patienter och deras anhöriga att få information om patientens tillstånd och kommande besvär. Riskuppfattning, riskbearbetning, känslor, personliga värderingar, social press, miljö och ekonomiska förutsättningar bidrog som barriärer för att få informationen att nå fram till patienterna. Patienterna uppgav att det behövdes förbättringar angående information och undervisning. Det fanns många områden där förbättringar kunde göras angående information och undervisning vid hjärt- och kärlsjukdomar. Ibland ges inte den informationen som patienterna tycker att de behöver.

Evaluating the effect of a patient education brochure on patients’ expectations and satisfaction with emergency department service

Introduction: The purpose of this study was to assess the capacity of a written intervention, in this case a patient information brochure, to improve patient satisfaction during an Emergency Department (ED) visit. For the purpose of measuring the effect of the intervention the ED journey was conceptualised as a series of distinct areas of service comprising waiting time, service by the triage nurse, care from doctors and nurses and information giving Background of study: Research into patient satisfaction has become a widespread activity endorsed by both governments and hospital administrations. The literature on ED patient satisfaction has consistently indicated three primary areas of patient dissatisfaction: waiting time, nursing care and communication. Recent developments in the literature on patient satisfaction studies however have highlighted the relationship between patients. expectations of a service encounter and their consequent assessment of the experience as dissatisfying or satisfying. Disconfirmation theory posits that the degree to which expectations are confirmed will affect subsequent levels of satisfaction. The conceptual framework utilised in this study is Coye.s (2004) model of disconfirmation. Coye while reiterating satisfaction is a consequence of the degree expectations are either confirmed or disconfirmed also posits that expectations can be modified by interventions. Coye.s work conceptualises these interventions as intra encounter experiences (cues) which function to adjust expectations. Coye suggests some cues are unintended and may have a negative impact which also reinforces the value of planned cues intended to meet or exceed consumer expectations. Consequently the brochure can be characterized as a potentially positive cue, encouraging the patient to understand processes and to orient them in what can be a confronting environment. Only a limited number of studies have examined the effect of written interventions within an ED. No studies could be located which have tested the effect of ED interventions using a conceptual framework which relates the effect of the degree to which expectations are confirmed or disconfirmed in terms of satisfaction with services. Method: Two studies were conducted. Study One used qualitative methods to explore patients. expectations of the ED from the perspective of both patients and health care professionals. Study One was used in part to direct the development of the intervention (brochure) in Study Two. The brochure was an intervention designed to modify patients. expectations thus increasing their satisfaction with the provision of ED service. As there was no existing tools to measure ED patients. expectations and satisfaction a new tool was also developed based on the findings and the literature of Study One. Study Two used a non-randomised, quasi-experimental approach using a non-equivalent post-test only comparison group design used to investigate the effect of the patient education brochure (Stommel and Wills, 2004). The brochure was disseminated to one of two study groups (the intervention group). The effect of the brochure was assessed by comparing the data obtained from both the intervention and control group. These two groups consisted of 150 participants each. It was expected that any differences in the relevant domains selected for examination would indicate the effect of the brochure both on expectation and potentially satisfaction. Results: Study One revealed several areas of common ground between patients and nurses in terms of relevant content for the written intervention, including the need for information on the triage system and waiting times. Areas of difference were also found with patients emphasizing communication issues, whereas focus group members expressed concern that patients were often unable to assimilate verbal information. The findings suggested the potential utility of written material to reinforce verbal communication particularly in terms of the triage process and other ED protocols. This material was synthesized within the final version of the written intervention. Overall the results of Study Two indicated no significant differences between the two groups. The intervention group did indicate a significant number of participants who viewed the brochure of having changed their expectations. The effect of the brochure may have been obscured by a lack of parity between the two groups as the control group presented with statistically significantly higher levels of acuity and experienced significantly shorter waiting times. In terms of disconfirmation theory this would suggest expectations that had been met or exceeded. The results confirmed the correlation of expectations with satisfaction. Several domains also indicated age as a significant predictor with older patients tending to score higher satisfaction results. Other significant predictors of satisfaction established were waiting time and care from nurses, reinforcing the combination of efficient service and positive interpersonal experiences as being valued by patients. Conclusions: Information presented in written form appears to benefit a significant number of ED users in terms of orientation and explaining systems and procedures. The degree to which these effects may interact with other dimensions of satisfaction however is likely to be limited. Waiting time and interpersonal behaviours from staff also provide influential cues in determining satisfaction. Written material is likely to be one element in a series of coordinated strategies to improve patient satisfaction during periods of peak demand.

Information transfer for multi-trauma patients on discharge from the emergency department : mixed-method narrative review

Aim. This paper is a report of a review conducted to identify (a) best practice in information transfer from the emergency department for multi-trauma patients; (b) conduits and barriers to information transfer in trauma care and related settings; and (c) interventions that have an impact on information communication at handover and beyond. Background. Information transfer is integral to effective trauma care, and communication breakdown results in important challenges to this. However, evidence of adequacy of structures and processes to ensure transfer of patient information through the acute phase of trauma care is limited. Data sources. Papers were sourced from a search of 12 online databases and scanning references from relevant papers for 1990–2009. Review methods. The review was conducted according to the University of York’s Centre for Reviews and Dissemination guidelines. Studies were included if they concerned issues that influenced information transfer for patients in healthcare settings. Results. Forty-five research papers, four literature reviews and one policy statement were found to be relevant to parts of the topic, but not all of it. The main issues emerging concerned the impact of communication breakdown in some form, and included communication issues within trauma team processes, lack of structure and clarity during handovers including missing, irrelevant and inaccurate information, distractions and poorly documented care. Conclusion. Many factors influence information transfer but are poorly identified in relation to trauma care. The measurement of information transfer, which is integral to patient handover, has not been the focus of research to date. Nonetheless, documented patient information is considered evidence of care and a resource that affects continuing care.

Information accountability for online healthcare social networks

Online social networking has become one of the most popular Internet applications in the modern era. They have given the Internet users, access to information that other Internet based applications are unable to. Although many of the popular online social networking web sites are focused towards entertainment purposes, sharing information can benefit the healthcare industry in terms of both efficiency and effectiveness. But the capability to share personal information; the factor which has made online social networks so popular, is itself a major obstacle when considering information security and privacy aspects. Healthcare can benefit from online social networking if they are implemented such that sensitive patient information can be safeguarded from ill exposure. But in an industry such as healthcare where the availability of information is crucial for better decision making, information must be made available to the appropriate parties when they require it. Hence the traditional mechanisms for information security and privacy protection may not be suitable for healthcare. In this paper we propose a solution to privacy enhancement in online healthcare social networks through the use of an information accountability mechanism.

The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

Quality and readability of information materials for people with brain tumours and their families

Written information is commonly used to inform patients about their disease and treatment, but must be evidence-based and understandable to be useful. This study assessed the quality of the content and the readability of information brochures for people affected by brain tumours. We randomly selected 18 publicly available brochures. Brochures were assessed by criteria to assess the quality of content using the DISCERN instrument. Readability was tested using three commonly used formulas, which yield the reading grade level required to comprehend the brochure (sixth grade level recommended). The mean overall DISCERN score was 3.17 out of a maximum of 5 (moderate quality); only one achieved a rating greater than 4 (high quality). Only one brochure met the sixth grade readability criteria. Although brochures may have accurate content, few satisfied all of the recommended criteria to evaluate their content. Existing brochures need to be critically reviewed and simplified, consumer-focused brochures produced.