Affective Medicine: a review of Affective Computing efforts in Medical Informatics

Background: Affective computing (AC) is concerned with emotional interactions performed with and through computers. It is defined as “computing that relates to, arises from, or deliberately influences emotions”. AC enables investigation and understanding of the relation between human emotions and health as well as application of assistive and useful technologies in the medical domain. Objectives: 1) To review the general state of the art in AC and its applications in medicine, and 2) to establish synergies between the research communities of AC and medical informatics. Methods: Aspects related to the human affective state as a determinant of the human health are discussed, coupled with an illustration of significant AC research and related literature output. Moreover, affective communication channels are described and their range of application fields is explored through illustrative examples. Results: The presented conferences, European research projects and research publications illustrate the recent increase of interest in the AC area by the medical community. Tele-home healthcare, AmI, ubiquitous monitoring, e-learning and virtual communities with emotionally expressive characters for elderly or impaired people are few areas where the potential of AC has been realized and applications have emerged. Conclusions: A number of gaps can potentially be overcome through the synergy of AC and medical informatics. The application of AC technologies parallels the advancement of the existing state of the art and the introduction of new methods. The amount of work and projects reviewed in this paper witness an ambitious and optimistic synergetic future of the affective medicine field

Pain sensitivity and observer perception of pain in individuals with autistic spectrum disorder

The peer-reviewed literature investigating the relationship between pain expression and perception of pain in individuals with ASD is sparse. The aim of the present systematic PRIMSA review was twofold: first, to see what evidence there is for the widely held belief that individuals with ASD are insensitive to pain or have a high pain threshold in the peer-reviewed literature and, second, to examine whether individuals with ASD react or express pain differently. Fifteen studies investigating pain in individuals with ASD were identified. The case studies all reported pain insensitivity in individuals with ASD. However, the majority of the ten experimental studies reviewed indicate that the idea that individuals with ASD are pain insensitive needs to be challenged. The findings also highlight the strong possibility that not all children with ASD express their physical discomfort in the same way as a neurotypical child would (i.e., cry, moan, seek comfort, etc.) which may lead caregivers and the medical profession to interpret this as pain insensitivity or incorrectly lead them to believe that the child is in no pain. These results have important implications for the assessment and management of pain in children with ASD

Evaluating Lifeworld as an emancipatory methodology

Disability research is conducted within a highly politicised ‘hotbed’ of competing paradigms and principles. New researchers, who want to work within the social model, are soon faced with complex and challenging methodological and philosophical dilemmas. The social model advocates research agendas that are focused on the emancipation and empowerment of disabled people but, in reality, these are rarely achieved. To be successful researchers need to engage with innovative and creative methodologies and to share their experiences of these within environments that welcome challenge and debate. This paper focuses on Lifeworld and assesses its value as a tool for emancipatory research. Using examples from a study with parents, whose children were in the process of being labelled as having autism, the paper illustrates how the principles that ‘underpin’ the methodology offered a supportive framework for a novice researcher

A large population-based investigation into the genetics of susceptibility to gastrointestinal infections and the link between gastrointestinal infections and mental illness.

Gastrointestinal infections can be life threatening, but not much is known about the host's genetic contribution to susceptibility to gastrointestinal infections or the latter's association with psychiatric disorders. We utilized iPSYCH, a genotyped population-based sample of individuals born between 1981 and 2005 comprising 65,534 unrelated Danish individuals (45,889 diagnosed with mental disorders and 19,645 controls from a random population sample) in which all individuals were linked utilizing nationwide population-based registers to estimate the genetic contribution to susceptibility to gastrointestinal infections, identify genetic variants associated with gastrointestinal infections, and examine the link between gastrointestinal infections and psychiatric and neurodevelopmental disorders. The SNP heritability of susceptibility to gastrointestinal infections ranged from 3.7% to 6.4% on the liability scale. Significant correlations were found between gastrointestinal infections and the combined group of mental disorders (OR = 2.09; 95% CI: 1.82-2.4, P = 1.87 × 10-25). Correlations with autism spectrum disorder, attention deficit hyperactivity disorder, and depression were also significant. We identified a genome-wide significant locus associated with susceptibility to gastrointestinal infections (OR = 1.13; 95% CI: 1.08-1.18, P = 2.9 × 10-8), where the top SNP was an eQTL for the ABO gene. The risk allele was associated with reduced ABO expression, providing, for the first time, genetic evidence to support previous studies linking the O blood group to gastrointestinal infections. This study also highlights the importance of integrative work in genetics, psychiatry, infection, and epidemiology on the road to translational medicine

The Autism Toolbox : An Autism Resource for Scottish Schools

The Autism Toolbox will draw upon a range of practice experience, literature and research to offer guidance for authorities and schools providing for children and young people with Autism Spectrum Disorders (ASD)

Towards better outcomes for autistic individuals with Eating Disorders

Evidence suggests that autistic individuals with an Eating Disorder (ED) respond to current interventions differently compared to neurotypical individuals. Furthermore, many are undiagnosed until they reach mental health services with mainly women being missed with current bias in the assessment process. Once they reach mental health services clinicians struggle to identify who might benefit from a full assessment and potential treatment adaptations. This thesis aims to firstly evaluate how autistic individuals respond to standard ED interventions utilising a systematic search to evaluate all available literature on the topic. By evaluating the current literature clinicians can make more informed clinical pathway decisions. Secondly, to evaluate an improved screening measure for use in ED services to help guide clinicians to make accurate referrals and appropriate adaptations for those that might benefit from an autism assessment. Participants were recruited as part of a larger study examining eating difficulties in autistic individuals, but the data was utilised in a novel way to develop a predictive model for screening autistic individuals with an ED. Finally, my reflections on the process of completing a thesis in this area for the benefit of fellow researchers and clinicians working in this field

A Participatory Information Management Framework for Patient Centred Care of Autism Spectrum Disorder

Patient-centred care (PCC) is grounded on the relationships formed between healthcare professionals, patients and patients’ family members. This network of stakeholders is frequently found to be disconnected due to the absence of an enabling framework. Active online participation and continuous engagement improves patients’ healthcare experience and healthcare professionals’ understanding of the illness. The community setting of PCC further generates crowd intelligence which in turn complements the knowledge of clinical experts. This body of evolving knowledge is a valuable resource with long term impact for both current and new patients as well as healthcare professionals. It is highly relevant for spectrum illnesses that usually span across the lifetime of a patient, such as Autism Spectrum Disorder (ASD). A framework provides structure to such a body of knowledge and defines functionality that delivers and sustains its use. This paper presents a participatory information management (PIM) framework for the delivery of PCC for ASD in a health, education and community service setting. The framework is founded on the updated IS participation theory. Driven by patient participation, it expands thereon to intersect community and clinician participation. As discussed in the paper, the potential outcomes are broad, ranging from improved healthcare quality to enabling translational research. An ongoing pilot project applying the framework to ASD is also reported in the paper

Cohort profile:Scotland’s record-linkage e-cohorts of people with intellectual disabilities, and autistic people (SCIDA)

Purpose: To investigate health, mortality and healthcare inequalities experienced by people with intellectual disabilities, and autistic people, and their determinants; an important step towards identifying and implementing solutions to reduce inequalities. This paper describes the cohorts, record-linkages and variables that will be used. Participants: Scotland’s Census, 2011 was used to identify Scotland’s citizens with intellectual disabilities, and autistic citizens, and representative general population samples with neither. Using Scotland’s community health index, the Census data (demography, household, employment, long-term conditions) were linked with routinely collected health, death and healthcare data: Scotland’s register of deaths, Scottish morbidity data 06 (SMR06: cancer incidence, mortality, treatments), Prescribing Information System (identifying asthma/chronic obstructive pulmonary disease; angina/congestive heart failure/hypertension; peptic ulcer/reflux; constipation; diabetes; thyroid disorder; depression; bipolar disorders; anxiety/sleep; psychosis; attention deficit hyperactivity disorder; epilepsy; glaucoma), SMR01 (general/acute hospital admissions and causes, ambulatory care sensitive admissions), SMR04 (mental health admissions and causes), Scottish Care Information–Diabetes Collaboration (diabetic care quality, diabetic outcomes), national bowel screening programme and cervical screening. Findings to date: Of the whole population, 0.5% had intellectual disabilities, and 0.6% were autistic. Linkage was successful for >92%. The resultant e-cohorts include: (1) 22 538 people with intellectual disabilities (12 837 men and 9701 women), 4509 of whom are children <16 years, (2) 27 741 autistic people (21 390 men and 6351 women), 15 387 of whom are children <16 years and (3) representative general population samples with neither condition. Very good general health was reported for only 3389 (15.0%) people with intellectual disabilities, 10 510 (38.0%) autistic people, compared with 52.4% general population. Mental health conditions were reported for 4755 (21.1%) people with intellectual disabilities, 3998 (14.4%) autistic people, compared with 4.2% general population. Future plans: Analyses will determine the extent of premature mortality, causes of death, and avoidable deaths, profile of health conditions and cancers, healthcare quality and screening and determinants of mortality and healthcare