Patient's need for choice and information across the interface between primary and secondary care: A survey

Objective

Hospitals in the Netherlands have recently made certain performance data public, allowing patients to choose the location of their care. The objective of this study is to assess (a) patient preferences and experiences concerning the transition between primary and secondary health care, (b) patients’ needs for choice and information and how these are influenced by personal and morbidity factors.

Methods

Two different types of questionnaires were used. The first questionnaire concerns the importance that patients attach to the care provided. The second questionnaire concerns the actual experiences of the patient with the care provided.For the selection of patients, we used the databases of the registration networks of the Departments of General Practice of the Universities of Groningen and Leiden. The questionnaires were returned by 513 patients (Importance 69%) and 1404 patients (Experience 65%).

Results

Many patients prefer the GP advising them regarding which hospital or specialist they should be referred to: a quarter of the patients preferred that the GP decided for them. Patients with a curable condition and patients aged between 25 and 65, highly educated and with stable personal characteristics as measured by a purposive scale, more often wished to use information from internet or newspapers to make a decision.The amount of information that was needed on illness or treatment varied greatly. Young people, older people, and those with less stable personal characteristics more often desired only practical information.

Conclusions

In spite of making performance data of different health care institutions public, only a limited number of patients want to use this information on a limited number of health problems.

Practice implications

Care providers should take differences into account concerning patients’ need for information on their illness.     

Human-centred methods in the design of an e-health solution for patients undergoing weight loss treatment

Background and objectivePatients undergoing weight loss treatment require follow-up as part of the treatment process. E-health solutions may be used for this purpose. We have used an iterative design approach to develop a patient-centred e-health solution for patients undergoing weight loss treatment. Our objective is to describe and report on the design process and suggest implications for human-centred design of such systems.MethodsHuman-centred design methods were assessed as part of the design process. The process involved a field study to gain domain knowledge, followed by needs assessment through a series of participatory design workshops, and system evaluation through a workshop and a number of usability tests before system implementation.ResultsBy using an iterative design approach and by involving patients and healthcare professionals throughout the process, letting them hold the roles as informants, design partners, testers and users, we could reveal important aspects throughout the design process that are crucial for system realization and user acceptance. We found that weight loss patients are vulnerable, requiring that designers take special care when involving them in the design process. Our findings imply that involving stakeholders separately during specific human-centred activities is important in order to capture subtle, but critical aspects of the users’ requirements.ConclusionApplying human-centred methods in the design of e-health solutions requires that designers must take particular considerations when patients and healthcare professionals are involved in the design process.     

Comparing the use of an online expert health network against common information sources to answer health questions

Background

Many workers have questions about occupational safety and health (OSH). It is unknown whether workers are able to find correct, evidence-based answers to OSH questions when they use common information sources, such as websites, or whether they would benefit from using an easily accessible, free-of-charge online network of OSH experts providing advice.

Objective

To assess the rate of correct, evidence-based answers to OSH questions in a group of workers who used an online network of OSH experts (intervention group) compared with a group of workers who used common information sources (control group).

Methods

In a quasi-experimental study, workers in the intervention and control groups were randomly offered 2 questions from a pool of 16 standardized OSH questions. Both questions were sent by mail to all participants, who had 3 weeks to answer them. The intervention group was instructed to use only the online network ArboAntwoord, a network of about 80 OSH experts, to solve the questions. The control group was instructed that they could use all information sources available to them. To assess answer correctness as the main study outcome, 16 standardized correct model answers were constructed with the help of reviewers who performed literature searches. Subsequently, the answers provided by all participants in the intervention (n = 94 answers) and control groups (n = 124 answers) were blinded and compared with the correct model answers on the degree of correctness.

Results

Of the 94 answers given by participants in the intervention group, 58 were correct (62%), compared with 24 of the 124 answers (19%) in the control group, who mainly used informational websites found via Google. The difference between the 2 groups was significant (rate difference = 43%, 95% confidence interval [CI] 30%–54%). Additional analysis showed that the rate of correct main conclusions of the answers was 85 of 94 answers (90%) in the intervention group and 75 of 124 answers (61%) in the control group (rate difference = 29%, 95% CI 19%–40%). Remarkably, we could not identify differences between workers who provided correct answers and workers who did not on how they experienced the credibility, completeness, and applicability of the information found (P > .05).

Conclusions

Workers are often unable to find correct answers to OSH questions when using common information sources, generally informational websites. Because workers frequently misjudge the quality of the information they find, other strategies are required to assist workers in finding correct answers. Expert advice provided through an online expert network can be effective for this purpose. As many people experience difficulties in finding correct answers to their health questions, expert networks may be an attractive new source of information for health fields in general.     

Predictors of Internet use for health information among male and female Internet users: Findings from the 2009 Taiwan National Health Interview Survey

BackgroundThe Internet is an increasingly important source of health information for the general population. Both preventive health behavior and Internet use are known to be different between men and women. However, few studies have compared predictors of Internet use for health information between the sexes.ObjectivesTo investigate the prevalence and predictors of Internet use for health information among male and female adult Internet users using data from a population-based survey in Taiwan.MethodsRespondents between the ages of 20–65 years were identified from the dataset of the 2009 Taiwan National Health Interview Survey. The outcome variable of the study, the utilization of the Internet for health information, was ascertained by asking whether the respondent had ever used the Internet to search for health information or obtain health services. Univariate and multivariate logistic regression analyses were conducted separately for men and women to evaluate factors associated with the use of Internet for health information.ResultsOf the 2741 adults aged 20–65 years who had ever used the Internet, 1766 (64.4%) of them had used it for health information or services. Multivariate logistic regression analyses showed that a higher educational level (adjusted odds ratio [AOR] = 3.60, P < 0.001), living alone (AOR = 1.77, P = 0.019), had exercised in the past two weeks (AOR = 2.41, P < 0.001), residing in city or urban district (AOR = 1.28, P = 0.049), with a perceived health status of extremely good, very good, or good (AOR = 1.34, P = 0.022), and had used Western medicine services in the past month (AOR = 1.51, P = 0.005) were significantly associated with health information use in male Internet users. On the other hand, age between 20–44.9 years (AOR = 1.87, P < 0.001), a higher educational level (AOR = 3.57, P < 0.001), being married (AOR = 1.68, P = 0.001), had exercised in the past two weeks (AOR = 1.56, P < 0.001), and had a mean monthly personal income of NT$ 20,000 and above were significant factors in female Internet users.ConclusionsThis secondary data analysis of a representative sample of Taiwan population revealed that a similar but not identical set of independent factors was associated with the use of Internet for health information between male and female Internet users.     

A purpose-based evaluation of information for patients: an approach to measuring effectiveness

OBJECTIVE: To assess the feasibility, internal reliability, and validity, of an assessment tool, purpose-based information assessment (PIA), that we had developed to evaluate how effectively information provided to patients addresses their individual purposes for the information. The study also demonstrated potential novel insight gained by the PIA assessment. METHODS: One hundred and eighty-two patients and family members were provided with a booklet on early-stage prostate cancer and its treatment options, in the context of a clinical trial comparing two booklets. Using the PIA, participants rated the importance (4-point Likert scale) of each of six previously identified common purposes for such information: to organize their thoughts, to understand their situation, to decide on treatment, to plan their future, to provide emotional support to others, and to discuss issues. Participants then rated how much their booklet helped address each of their purposes (4-point Likert scale). Evaluations were returned by mail. This report assesses the PIA evaluation of one of the booklets. RESULTS: One hundred and fifty-six (86%) participants returned evaluations. Participants wanted information for a mean of 5.8 purposes (range 2-7); 72.5% rated the booklet at different levels of helpfulness across their purposes. The assessment showed internal reliability on three constructs tested, and convergent validity on 10 of 11 tested. PIA's individualized purpose-based approach revealed how an overall assessment could be misleading: overall, the booklet was more effective at helping readers decide than at helping them plan (64.7% versus 55.8%, respectively, rated the booklet as "helpful" or better). However, among readers who rated the two purposes as "very important", the booklet had a mean helpfulness rating of 1.95 for deciding compared to a mean of 2.02 for planning. The result suggests that the booklet was not better at helping people decide than at helping them plan, for the readers who most needed the help. CONCLUSION: The PIA seems reliable and valid and adequately sensitive. The individualized purpose-based approach to assessing information appears to provide more specific feedback and more insights into its effectiveness than a single, global evaluation. PRACTICE IMPLICATIONS: Developers of information source or educational tools for patients can use an individualized purpose-based assessment, such as the PIA, to identify strengths and limitations of the tools more precisely than global assessments.     

Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data

Background

This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood.

Objective

PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues.

Methods

Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges.

Results

Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.

Conclusions

Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.     

Positive attitudes and failed queries: an exploration of the conundrums of consumer health information retrieval

Several studies have found that consumers report a high level of satisfaction with the Internet as a health information resource. Belied by this positive attitude, however, are other studies reporting that consumers were often unsuccessful in searching for health information. In this paper, we present an interview and observation study in which we asked health consumers to search for health information on the Internet after first stating their search goals. Upon the conclusion of the session they were asked to evaluate their searches. We found that many consumers were unable to find satisfactory information when performing a specific query, while in general the group viewed health information retrieval (HIR) on the Internet in a positive light. We analyzed the observed search sessions to determine what factors accounted for the failure of specific searches and positive attitudes, and also discussed potential informatics solutions.     

Examining the evidence of the impact of health information technology in primary care: An argument for participatory research with health professionals and patients

PurposeHealth information technology represents a promising avenue to improve health care delivery. How can we use lessons learnt from existing health information technologies in primary care to inform the optimal design of newer developments such as personal health records?MethodsThe results of systematic literature reviews about the impact of different information systems on health outcomes in primary care are critically discussed in a narrative synthesis, with a focus on their implications for the development of personal health records.ResultsGiven the proliferation of systematic reviews and randomized controlled trials, high quality evidence for health information technology in primary care is accumulating with mixed results. The heterogeneity of systems being compared and the quality of research can no longer account for these findings. One potential explanation may be that systems originally designed for acute care settings are being implemented in primary care. Early studies evaluating personal health records suggest that targeting patient outcomes directly and adapting systems to patients’ needs may be part of the solution.ConclusionIn order to develop personal health records for primary care, studies are needed that involve the users, namely patients and primary care health professionals, in the design and evaluation of these systems from their inception. Participatory research is a recommended methodological approach.     

Homeopathy enables rheumatoid arthritis patients to cope with their chronic ill health: A qualitative study of patient's perceptions of the homeopathic consultation

Objective

The role of the consultation in mediating improved clinical outcomes has been demonstrated in both conventional and complementary medicine but to date no depth study has explored how complementary medical consultations achieve such benefits. This study explored rheumatoid arthritis (RA) patients’ perceptions of the homeopathic consultation including any perceived benefit.

Methods

Qualitative study nested within a placebo-controlled multi-centre trial assessing adjunctive homeopathic intervention for RA. In-depth face to face interviews (with 16 participants) were analysed using interpretative phenomenological analysis.

Results

RA participants perceived homeopathic consultations helped them cope better through either enabling improved physical health, wellbeing and/or illness management. Four themes associated with improved coping were: receiving emotional support; exploring the illness; exploring self; and gaining advice. Exploring the wider narrative of their illness, enabled participants to address their individual needs and for some, this process of increased awareness changed their perception resulting in the perceived benefits.

Conclusion

Homeopathic consultations enable RA patient to cope better.

Practice implications

Homeopathic consultations may provide an additional resource for RA patients. Identifying and employing the “active ingredients” that confer benefit may be appropriate for other clinicians to maximise patient benefits from consultations.     

ASL‐MRICloud: An online tool for the processing of ASL MRI data

Arterial spin labeling (ASL) MRI is increasingly used in research and clinical settings. The purpose of this work is to develop a cloud‐based tool for ASL data processing, referred to as ASL‐MRICloud, which may be useful to the MRI community. In contrast to existing ASL toolboxes, which are based on software installation on the user's local computer, ASL‐MRICloud uses a web browser for data upload and results download, and the computation is performed on the remote server. As such, this tool is independent of the user's operating system, software version, and CPU speed. The ASL‐MRICloud tool was implemented to be compatible with data acquired by scanners from all major MRI manufacturers, is capable of processing several common forms of ASL, including pseudo‐continuous ASL and pulsed ASL, and can process single‐delay and multi‐delay ASL data. The outputs of ASL‐MRICloud include absolute and relative values of cerebral blood flow, arterial transit time, voxel‐wise masks indicating regions with potential hyper‐perfusion and hypo‐perfusion, and an image quality index. The ASL tool is also integrated with a T₁‐based brain segmentation and normalization tool in MRICloud to allow generation of parametric maps in standard brain space as well as region‐of‐interest values. The tool was tested on a large data set containing 309 ASL scans as well as on publicly available ASL data from the Alzheimer's Disease Neuroimaging Initiative (ADNI) study.     

Validation of large data sets, an essential prerequisite for data analysis: an analytical survey of the Bone Marrow Donors Worldwide

Large data sets like the Bone Marrow Donors Worldwide (BMDW) data set can be used for population genetic analyses. The qualities of such data sets are unique. To be able to use the BMDW data for analyses, several problems, like limited size and selective DR typing, of the data have to be solved and the quality of the registry data subsets has to be examined. We describe these problems and methods to overcome them. Also, we give an overview of the qualities of the different registry subsets. Sixteen of the twenty-nine examined subsets contain data that can be used for population genetic analysis. We will deal with these analyses in the future. Additionally, we present a method to calculate the minimum number of individuals required for reliable haplotype frequency estimation.     

Tested communication strategies for providing information to patients in medical consultations: A scoping review and quality assessment of the literature

ObjectivesTo systematize the scientific knowledge of empirically tested strategies for verbally providing medical information in patient-physician consultations.MethodsA scoping review searching for terms related to physician, information, oral communication, and controlled study. Four pairs of reviewers screened articles. For each selected study, we assessed the quality and summarized aspects on participants, study, intervention, and outcomes. Information provision strategies were inductively classified by types and main categories.ResultsAfter screening 9422 articles, 39 were included. The methodological quality was moderate. We identified four differently used categories of strategies for providing information: cognitive aid (n = 13), persuasive (n = 8), relationship- (n = 3), and objectivity-oriented strategies (n = 4); plus, one “mixed” category (n = 11). Strategies were rarely theoretically derived.ConclusionsCurrent research of tested strategies for verbally providing medical information is marked by great heterogeneity in methods and outcomes, and lack of theory-driven approaches. The list of strategies could be used to analyse real life communication.Practice implicationsFindings may aid the harmonization of future efforts to develop empirically-based information provision strategies to be used in clinical and teaching settings.     

Tailored information for cancer patients on the Internet: effects of visual cues and language complexity on information recall and satisfaction

Objective

This study was designed to investigate the effects of visual cues and language complexity on satisfaction and information recall using a personalised website for lung cancer patients. In addition, age effects were investigated.

Methods

An experiment using a 2 (complex vs. non-complex language) × 3 (text only vs. photograph vs. drawing) factorial design was conducted. In total, 200 respondents without cancer were exposed to one of the six conditions.

Results

Respondents were more satisfied with the comprehensibility of both websites when they were presented with a visual cue. A significant interaction effect was found between language complexity and photograph use such that satisfaction with comprehensibility improved when a photograph was added to the complex language condition. Next, an interaction effect was found between age and satisfaction, which indicates that adding a visual cue is more important for older adults than younger adults. Finally, respondents who were exposed to a website with less complex language showed higher recall scores.

Conclusion

The use of visual cues enhances satisfaction with the information presented on the website, and the use of non-complex language improves recall.

Practice implications

The results of the current study can be used to improve computer-based information systems for patients.     

Fertility patients demonstrate an unmet need for the provision of psychological information: A cross sectional study

Objectives

To examine the provision of information by health care providers (HCPs) to fertility patients about accessing psychological resources.

WWW mesothelioma information: Surfing on unreliable waters. A cross-sectional study into the content and quality of online informational resources for mesothelioma patients

Objective

Malignant Mesothelioma (MM) is a rare asbestos related disease mostly diagnosed in low-skilled patients. The decision-making process for MM treatment is complicated, making an adequate provision of information necessary. The objective of this study is to assess the content and quality of online informational resources available for Dutch MM patients.

Growth curve analyses are best suited to examine the relation between developmental pathways and selective breeding: comment on Hofer, Shair, Masmela, & Brunelli, Developmental effects of selective breeding for an infantile trait: the rat pup ultrasonic isolation call.

Hofer, Brunelli, Shair, & Masmela (2001) provide valuable information about the effects of selective breeding on rat-pup behaviors and physiology. Although the design and statistical analytic techniques employed are typical of those used to evaluate behavioral development in animals, I offer several suggestions about how to evaluate the influence of selective breeding on developmental pathways using modern statistical techniques. As Hofer et al. demonstrate, the development of rat behavior and physiology can be an excellent model for examining the relation between selection and development.