Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.

BACKGROUND: Routinely-collected mental health data could deliver novel insights for mental health research. However, patients' willingness to share their mental health data remains largely unknown. We investigated factors influencing likelihood of sharing these data for research purposes amongst people with and without experience of mental illness. METHODS: We collected responses from a diverse sample of UK National Health Service (NHS) users (n = 2187) of which about half (n = 1087) had lifetime experience of mental illness. Ordinal logistic regression was used to examine the influence of demographic factors, clinical service experience, and primary mental illness on willingness to share mental health data, contrasted against physical health data. RESULTS: There was a high level of willingness to share mental (89.7%) and physical (92.8%) health data for research purposes. Higher levels of satisfaction with the NHS were associated with greater willingness to share mental health data. Furthermore, people with personal experience of mental illness were more willing than those without to share mental health data, once the variable of NHS satisfaction had been controlled for. Of the mental illnesses recorded, people with depression, obsessive-compulsive disorder (OCD), personality disorder or bipolar disorder were significantly more likely to share their mental health data than people without mental illness. CONCLUSIONS: These findings suggest that positive experiences of health services and personal experience of mental illness are associated with greater willingness to share mental health data. NHS satisfaction is a potentially modifiable factor that could foster public support for increased use of NHS mental health data in research.

Building capacity for rigorous controlled trials in autism: the importance of measuring treatment adherence.

Research groups across Europe have been networking to share information and ideas about research on preschool children with autism. The paper describes preliminary work to develop capacity for future multi-site randomized controlled trials of early intervention, with a specific focus on the need to measure treatment adherence where parents deliver therapy. The paper includes a review of randomized and controlled studies of parent-mediated early intervention from two sources, a recent Cochrane Collaboration review and a mapping of European early intervention studies in autism published since 2002. The data extracted focused on methods for describing parent adherence, that is, how and to what extent parents carry out the strategies taught them by therapists. Less than half of the 32 studies reviewed included any measure of parent adherence. Only seven included a direct assessment method. The challenges of developing pan-European early intervention evaluation studies are discussed, including choice of intervention model and of important outcomes, the need for translation of measurement tools and achievement of joint training to reliability of assessors. Measurement of parent-child interaction style and of adherence to strategies taught need further study.

Eye-movements reveal attention to social information in autism spectrum disorder.

Autism spectrum disorder (ASD) is a neurodevelopmental condition in which children show reduced attention to social aspects of the environment. However in adults with ASD, evidence for social attentional deficits is equivocal. One problem is that many paradigms present social information in an unrealistic, isolated way. This study presented adults and adolescents, with and without ASD, with a complex social scene alongside another, non-social scene, and measured eye-movements during a 3-s viewing period. Analyses first identified viewing time to different regions and then investigated some more complex issues. These were: the location of the very first fixation in a trial (indicating attentional priority); the effect of a task instruction on scan paths; the extent to which gaze-following was evident; and the degree to which participants' scan paths were influenced by the low-level properties of a scene. Results indicate a superficially normal attentional preference for social information in adults with ASD. However, more sensitive measures show that ASD does entail social attention problems across the lifespan, supporting accounts of the disorder which emphasise lifelong neurodevelopmental atypicalities. These subtle abnormalities may be sufficient to produce serious difficulties in real-life scenarios.

The development of change blindness: children's attentional priorities whilst viewing naturalistic scenes.

Change blindness describes the surprising difficulty of detecting large changes in visual scenes when changes occur during a visual disruption. In order to study the developmental course of this phenomenon, a modified version of the flicker paradigm, based on Rensink, O'Regan & Clark (1997), was given to three groups of children aged 6-12 years and to a group of adults. This paradigm tested the ability to detect single colour, presence/absence and location changes of both high and low semantic importance in a complex scene. Semantically important changes were detected more quickly and accurately than less semantically important changes, by all age groups, indicating that children had the same attentional priorities as adults. Older children achieved more efficient and accurate detection of changes than younger children and reached almost adult level at 10-12 years old. These improvements parallel age-related developments in attention and visual perception.

Do people with autistic spectrum disorder show normal selection for attention? Evidence from change blindness.

People in the general population are typically very poor at detecting changes in pictures of complex scenes. The degree of this 'change blindness', however, varies with the content of the scene: when an object is semantically important or contextually inappropriate, people may be more effective at detecting changes. Two experiments investigated change blindness in people with autism, who are known from previous research to be efficient in detecting features yet poor at processing stimuli for meaning and context. The first experiment measured the effect of semantic information while the second investigated the role of context in directing attention. In each task, participants detected the dissimilarity between pairs of images. Both groups showed a main effect of image type in both experimental tasks, showing that their attention was directed to semantically meaningful and contextually inappropriate items. However, the autistic group also showed a greater difficulty detecting changes to semantically marginal items in the first experiment. Conclusions point to a normal selection of items for attention in people with autism spectrum disorders, although this may be combined with difficulty switching or disengaging attention.