Using collective intelligence methods to improve government data infrastructures and promote the use of complex data: The example of the Northern Ireland Longitudinal Study.

BACKGROUND: This paper discusses how collective intelligence (CI) methods can be implemented to improve government data infrastructures, not only to support understanding and primary use of complex national data but also to increase the dissemination and secondary impact of research based on these data. The case study uses the Northern Ireland Longitudinal Study (NILS), a member of the UK family of census/administrative data longitudinal studies (UKLS). METHODS: A stakeholder-engaged CI approach was applied to inform the transformation of the NILS Research Support Unit (RSU) infrastructure to support researchers in their use of government data, including collaborative decision-making and better dissemination of research outputs. RESULTS: We provide an overview of NILS RSU infrastructure design changes that have been implemented to date, focusing on a website redesign to meet user information requirements and the formation of better working partnerships between data users and providers within the Northern Ireland data landscape. We also discuss the key challenges faced by the design team during this project of transformation. CONCLUSION: Our primary objective to improve government data infrastructure and to increase dissemination and the impact of research based on data was a complex and multifaceted challenge due to the number of stakeholders involved and their often conflicting perspectives. Results from this CI approach have been pivotal in highlighting how NILS RSU can work collaboratively with users to maximize the potential of this data, in terms of forming multidisciplinary networks to ensure the research is utilized in policy and in the literature and providing academic support and resources to attract new researchers.

Interplay Between Innovation and Intersubjectivity: Therapists Perceptions of Phantom Motor Execution Therapy and Its Effect on Phantom Limb Pain.

Purpose: Interpersonal processes, including therapeutic alliance, may modulate the impact of interventions on pain experience. However, the role of interpersonal context on the effects of technology-enhanced interventions remains underexplored. This study elicited therapists' perspectives on how a novel rehabilitative process, involving Phantom Motor Execution (PME), may impact phantom limb pain. The mediating role of therapeutic alliance, and the way PME influenced its formation, was investigated. Methods: A qualitative descriptive design, using a framework method, was used to explore therapists' (n=11) experiences of delivering PME treatment. Semi-structured online-based interviews were conducted. Results: A 3-way interaction between therapist, patient, and the PME device was an overarching construct tying four themes together. It formed the context for change in phantom limb experience. The perceived therapeutic effects (theme 1) extended beyond those initially hypothesised and highlighted the mediating role of the key actors and context (theme 2). The therapeutic relationship was perceived as a transformative journey (theme 3), creating an opportunity for communication, collaboration, and bonding. It was seen as a cause and a consequence of therapeutic effects. Future directions, including the role of expertise-informed adaptations and enabling aspects of customised solutions, were indicated (theme 4). Conclusion: This study pointed to intrapersonal, interpersonal, and contextual factors that should be considered in clinical implementation of novel rehabilitative tools. The results demonstrated that therapists have unique insights and a crucial role in facilitating PME treatment. The study highlighted the need to consider the biopsychosocial model of pain in designing, evaluating, and implementing technology-supported interventions.

Facilitators and barriers to stakeholder engagement in advance care planning for older adults in community settings: a hybrid systematic review protocol.

Background: Poor stakeholder engagement in advance care planning (ACP) poses national and international challenges, preventing maximisation of its potential benefits. Conceptualisation of advance care planning as a health behaviour highlights the need to design innovative, evidence-based strategies that will facilitate meaningful end-of-life care decision-making. Aim: To review systematically and synthesise quantitative and qualitative evidence on barriers and facilitators to stakeholders` engagement in ACP for older adults (≥ 50 years old) in a community setting. Methods: A hybrid systematic review will be conducted, identifying studies for consideration in two phases. First, databases will be searched from inception to identify relevant prior systematic reviews, and assess all studies included in those reviews against eligibility criteria (Phase 1). Second, databases will be searched systematically for individual studies falling outside the timeframe of those reviews (Phase 2). A modified SPIDER framework informed eligibility criteria. A study will be considered if it (a) included relevant adult stakeholders; (b) explored engagement in ACP among older adults (≥50 years old); (c) employed any type of design; (d) identified enablers and/or barriers to events specified in the Organising Framework of ACP Outcomes; (e) used either quantitative, qualitative, or mixed methods methodology; and (f) evaluated phenomena of interest in a community setting (e.g., primary care or community healthcare centres). Screening, selection, bias assessment, and data extraction will be completed independently by two reviewers. Integrated methodologies will be employed and quantitative and qualitative data will be combined into a single mixed method synthesis. The Behaviour Change Wheel will be used as an overarching analytical framework and to facilitate interpretation of findings. The Joanna Briggs Institute (JBI) Reviewers` Manual and PRISMA-P guidelines have been used to inform this protocol development. Registration: This protocol has been submitted for registration on PROSPERO, registration number CRD42020189568 and is awaiting review.

Designing an e-learning tool to support health practitioners caring for patients taking multiple medications.

Background: Population ageing and improvements in healthcare mean the number of people living with two or more chronic conditions, or 'multimorbidity', is rapidly increasing. This presents a challenge to current disease-specific care delivery models. Adherence to prescribed medications appears particularly challenging for individuals living with multimorbidity, given the often-complex drug regimens required to treat multiple conditions. Poor adherence is associated with increased mortality, as well as wasted healthcare resources. Supporting medication adherence is a key priority for general practitioners (GPs) and practice nurses as they are responsible for much of the disease counselling and medication prescribing associated with chronic illnesses. Despite this, practical resources and training for health practitioners on how to promote adherence in practice is currently lacking. Informed by the principles of patient and public involvement (PPI), the aim of this research was to develop a patient informed e-learning resource to help GPs and nurses support medication adherence.  Method: Utilising collective intelligence (CI) and scenario-based design (SBD) methodology, input was gathered from 16 stakeholders to gain insights into barriers to supporting people with multimorbidity who are receiving polypharmacy, strategies for overcoming these barriers, and user needs and requirements to inform the design of the e-learning tool. Results: In total, 67 barriers to supporting people who are taking multiple medications were identified across 8 barrier categories. 162 options for overcoming the identified barriers were then generated. This data was used in the design of a short and flexible e-learning tool for continuous professional development, that has been integrated into general practice and clinical education programmes as a supportive tool. Conclusions: Using CI and SBD methodology was an effective way of facilitating collaboration, idea-generation, and the co-creation of design solutions amongst a diverse group of stakeholders. This approach could be usefully applied to address other complex healthcare-related challenges.

Perspective-taking influences attentional deployment towards facial expressions of pain: an eye-tracking study.

Empathetic perspective-taking (PT) may be critical in modulating attention and associated responses to another's pain. However, the differential effects of imagining oneself to be in the pain sufferer's situation ("Self-perspective") or imagining the negative impacts on the pain sufferer's experience ("Other-perspective") on attention have not been studied. The effects of observer PT (Self vs Other) and level of facial pain expressiveness (FPE) upon attention to another person's pain was investigated. Fifty-two adults were assigned to 1 of 3 PT conditions; they were instructed to view pairs of pain expressions and neutral faces and either (1) consider their own feelings (Self-perspective), (2) consider the feelings of the person in the picture (Other-perspective), or (3) received no further instructions (Control). Eye movements provided indices of early (probability and duration of first fixation) and later (total gaze duration) attentional deployment. Pain faces were more likely to be fixated upon first. A significant first fixation duration bias towards pain was observed, which increased with increasing levels of FPE, and was higher in the Self-PT than the Control condition. The proportion of total gaze duration on pain faces was higher in both experimental conditions than the Control condition. This effect was moderated by FPE in the Self-PT condition; there was a significant increase from low to high FPE. When observers attend to another's facial display of pain, top-down influences (such as PT) and bottom-up influences (such as sufferer's FPE) interact to control deployment and maintenance of attention.

Prior depressive symptoms and persistent child problem behaviours predict future depression in parents of children with developmental disabilities: The growing up in Ireland cohort study.

Predictors of depression over time were examined in parental carers of children with developmental disabilities (DD) and parents of typically developing children (controls) who participated in the Growing up in Ireland Study. Parents completed measures of depression, the Centre for Epidemiological Depression Scale (CES-D) and child problem behaviours, the Strength and Difficulties Questionnaire when the children were aged 9 (Wave 1) and 13 (Wave 2). Using CES-D cut-off scores to indicate probable depression, caregivers were more likely to be depressed at both waves compared to controls with a Wave 1 rate of depression of 14.6% vs. 7.9% (p < 0.001, Cramer`s V = 0.059) and Wave 2 (14.8% vs. 10%, p = 0.003, Cramer`s V = 0.038). While overall rates of depression were stable for caregivers, a shifting pattern emerged; 59.6% of those who were depressed at Wave 1, were not at Wave 2; similarly, 10.9% who were not depressed at Wave 1, were at Wave 2. Parents of children with DD were also more likely to report greater problem behaviours in their children compared to controls at both waves. Depression in caregivers at Wave 1 and persistent child problem behaviours were significant predictors of depression at Wave 2. In conclusion, while overall rates of depression remain stable in caregivers, there are shifting patterns evident with prior depression and persistent behaviour problems predictive of ongoing depression.

Phantom motor execution as a treatment for phantom limb pain: protocol of an international, double-blind, randomised controlled clinical trial.

INTRODUCTION: Phantom limb pain (PLP) is a chronic condition that can greatly diminish quality of life. Control over the phantom limb and exercise of such control have been hypothesised to reverse maladaptive brain changes correlated to PLP. Preliminary investigations have shown that decoding motor volition using myoelectric pattern recognition, while providing real-time feedback via virtual and augmented reality (VR-AR), facilitates phantom motor execution (PME) and reduces PLP. Here we present the study protocol for an international (seven countries), multicentre (nine clinics), double-blind, randomised controlled clinical trial to assess the effectiveness of PME in alleviating PLP. METHODS AND ANALYSIS: Sixty-seven subjects suffering from PLP in upper or lower limbs are randomly assigned to PME or phantom motor imagery (PMI) interventions. Subjects allocated to either treatment receive 15 interventions and are exposed to the same VR-AR environments using the same device. The only difference between interventions is whether phantom movements are actually performed (PME) or just imagined (PMI). Complete evaluations are conducted at baseline and at intervention completion, as well as 1, 3 and 6 months later using an intention-to-treat (ITT) approach. Changes in PLP measured using the Pain Rating Index between the first and last session are the primary measure of efficacy. Secondary outcomes include: frequency, duration, quality of pain, intrusion of pain in activities of daily living and sleep, disability associated to pain, pain self-efficacy, frequency of depressed mood, presence of catastrophising thinking, health-related quality of life and clinically significant change as patient's own impression. Follow-up interviews are conducted up to 6 months after the treatment. ETHICS AND DISSEMINATION: The study is performed in agreement with the Declaration of Helsinki and under approval by the governing ethical committees of each participating clinic. The results will be published according to the Consolidated Standards of Reporting Trials guidelines in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT03112928; Pre-results.