Background: This paper describes the impact evaluation of a large big data platform initiative that is being undertaken in order to increase the probability of its success. The initiative, MIDAS (Meaningful Integration of Data Analytics and Services), is a European health-based Horizon 2020 project comprising a consortium of members from various universities, research institutions, and government agencies. Objectives: The purpose of the paper is to present a pioneering platform that will support healthcare policymakers in their decision-making by enabling greater and more efficient use of their data. The goal is to present and evaluate the results of the MIDAS project across four countries. Methods/Approach: The literature is replete with examples of worthwhile technology projects that have failed due to user resistance. In order to avoid such failure, and ensure the success of the final MIDAS platform, a detailed impact evaluation is being undertaken at timed periods of development. Results: This paper describes the impact evaluation process, outlining the use of Q-methodology and the development of a 36-item concourse using the HTMLQ system for that purpose. Conclusions: This research contributes to the overall understanding of how impact evaluation can be undertaken at timed periods during the development of an innovative technology for organisational purposes.
Despite advances in technology and medical science, modern health-based projects are open to systemic failure due to many factors. These include I.T. developer's lack of awareness with regard to end-user needs, poor communication amongst all parties concerned and inappropriate or inadequate tests of the emerging system. Other issues may be external (e.g. political and legal) such as sharing of patient data and issues surrounding consent. The goal of this paper is to take a major health-based European model in current development and explore how it addresses the needs of four institutions in four different countries, and how it will meet their respective needs. The evaluation was designed within a Logic Model, and uses the Framework approach, and Q-Methodology to assess both impact and evaluation. Data will be collected through longitudinal semi-structured interviews and Q-scoring with principal stakeholders and developers at each stage of the project. This approach, recurring interviews with the same key players in the project, will help ensure that there is mutual understanding between I.T. developers and endusers of the system. The final system is meant to provide effective health-based decision support systems for policy makers.
Despite advances in technology and medical science, modern health-based projects are open to systemic failure due to many factors. These include I.T. developer's lack of awareness with regard to end-user needs, poor communication amongst all parties concerned and inappropriate or inadequate tests of the emerging system. Other issues may be external (e.g. political and legal) such as sharing of patient data and issues surrounding consent. The goal of this paper is to take a major health-based European model in current development and explore how it addresses the needs of four institutions in four different countries, and how it will meet their respective needs. The evaluation was designed within a Logic Model, and uses the Framework approach, and Q-Methodology to assess both impact and evaluation. Data will be collected through longitudinal semi-structured interviews and Q-scoring with principal stakeholders and developers at each stage of the project. This approach, recurring interviews with the same key players in the project, will help ensure that there is mutual understanding between I.T. developers and end-users of the system. The final system is meant to provide effective health-based decision support systems for policy makers. This work is licensed under aCreative Commons Attribution-NonCommercial 4.0 International License.
International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
International audience The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults. ; This study was funded by the European Parliament and managed by the European Union, DGSANCO, [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects "Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico" (Fasc. 1S49) and 'I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016′ (Fasc. 2S57) granted the contribution of the Italian data. ; Sí
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services. ; This study was funded by the European Parliament and managed by the European Union, DGSANTE [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico (Fasc. 1S49) and I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016 (Fasc. 2S57) granted the contribution of the Italian data. ; info:eu-repo/semantics/publishedVersion
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services. ; This study was funded by the European Parliament and managed by the European Union, DGSANTE [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects Osservatorio Italiano per il monitoraggio ...
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and postdiagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals. ; g This study was funded by the European Parliament and managed by the European Union, DGSANCO, [Ref.: SANCO/2014/ C2/035]. The Italian Ministry of Health projects 'Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico' (Fasc. 1S49) and 'I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016' (Fasc. 2S57) granted the contribution of the Italian data. ; info:eu-repo/semantics/publishedVersion
In: Micai , M , Ciaramella , A , Salvitti , T , Fulceri , F , Fatta , L M , Poustka , L , Diehm , R , Iskrov , G , Stefanov , R , Guillon , Q , Rogé , B , Staines , A , Sweeney , M R , Boilson , A M , Leósdóttir , T , Saemundsen , E , Moilanen , I , Ebeling , H , Yliherva , A , Gissler , M , Parviainen , T , Tani , P , Kawa , R , Vicente , A , Rasga , C , Budişteanu , M , Dale , I , Povey , C , Flores , N , Jenaro , C , Monroy , M L , Primo , P G , Charman , T , Cramer , S , Warberg , C K , Canal-Bedia , R , Posada , M , Scattoni , M L & Schendel , D 2022 , ' Intervention Services for Autistic Adults : An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences ' , Journal of Autism and Developmental Disorders , vol. 52 , no. 4 , pp. 1623-1639 . https://doi.org/10.1007/s10803-021-05038-0
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
International audience ; Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and postdiagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
In: Micai , M , Ciaramella , A , Salvitti , T , Fulceri , F , Fatta , L M , Poustka , L , Diehm , R , Iskrov , G , Stefanov , R , Guillon , Q , Rogé , B , Staines , A , Sweeney , M R , Boilson , A M , Leósdóttir , T , Saemundsen , E , Moilanen , I , Ebeling , H , Yliherva , A , Gissler , M , Parviainen , T , Tani , P , Kawa , R , Vicente , A , Rasga , C , Budişteanu , M , Dale , I , Povey , C , Flores , N , Jenaro , C , Monroy , M L , Primo , P G , Charman , T , Cramer , S , Warberg , C K , Canal-Bedia , R , Posada , M , Scattoni , M L & Schendel , D 2021 , ' Autistic Adult Health and Professional Perceptions of It : Evidence From the ASDEU Project ' , Frontiers in Psychiatry , vol. 12 , 614102 . https://doi.org/10.3389/fpsyt.2021.614102
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.
