Transatlantic collection of health informatics competencies

The electronic collection, processing and management of information is becoming increasingly important in healthcare. Because of the nature of the healthcare provision and delivery process, where the health, safety and quality of human lives are impacted on a daily basis, it is critical that those who work in the field are competent and able to perform all clinical, administrative, research and technology-impacted facets of their roles.The United States and the European Union have been working to encourage broader and more effective use of Information and Communications Technology (ICT) within healthcare. The development, use and governance of ICT within healthcare, often called health informatics, requires a number of competences which need to be identified and integrated into relevant skills assessment, education and training. Ultimately, this will help produce a more proficient and a more confident mobile health informatics-empowered workforce.A structured set of health information technology and eHealth implementation competences was collected in a co-operation project by voluntary experts in USA and European Union. The project took a deliberately broad starting point, seeking and reviewing an extensive range of related competencies. The skills cover the following domains of professions working with health information technology: direct patient care; administrative; engineering/information, communication, and technology (ICT); informatics; and research and biomedicine. The aggregation of over one thousand competencies was classified to a baseline set of skills and four levels of expertise in 33 focus areas according to Bloom’s taxonomy. The data set also contains definitions of 268 ‘typical’ professional roles. The use of the collection of competencies is supported by an open access web tool through which all the competencies can be searched through a query mechanism.The limitation of this work is that only the Acute Care segment of roles and competencies impacted by ICT was evaluated within the scope of this project, however, this subset of other care settings such as ambulatory, rehabilitative care, surgery, and others serves as a representative set of roles and competencies within the health care field as well as a being an important proof of concept for future usefulness of the work if extended beyond its current span. This project has made a contribution to the potential improvement of workforce mobility internationally

Design, implementation and usability analysis of patient empowerment in ADLIFE project via patient reported outcome measures and shared decision making

Introduction: This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. Background: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. Methods: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients’ clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach’ for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. Results: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. Conclusions: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel

Design, implementation and usability analysis of patient empowerment in ADLIFE project via patient reported outcome measures and shared decision making

Introduction: This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. Background: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. Methods: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients’ clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach’ for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. Results: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. Conclusions: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel

Enabling patient adherence via personalised, just-in time adaptive interventions in ADLIFE architecture

Chronic diseases introduce challenges for the patients to continuously be involved in their care activities and manage the changing requirements of their disease. Patient empowerment activities are a critical component to assist patients in their long-term care journey. In the ADLIFE project (H2020, SC1-DTH-11-2019, 875209), an integrated care planning approach is used where patients are assigned various care plan activities by multidisciplinary care teams. To increase patients’ adherence to the care plan, a continuous behavioral monitoring architecture is developed for delivering digital personalised, just-in time adaptive interventions

Evaluation of integrated care services in Catalonia:population-based and service-based real-life deployment protocols

BackgroundComprehensive assessment of integrated care deployment constitutes a major challenge to ensure quality, sustainability and transferability of both healthcare policies and services in the transition toward a coordinated service delivery scenario. To this end, the manuscript articulates four different protocols aiming at assessing large-scale implementation of integrated care, which are being developed within the umbrella of the regional project Nextcare (2016-2019), undertaken to foster innovation in technologically-supported services for chronic multimorbid patients in Catalonia (ES) (7.5M inhabitants).Whereas one of the assessment protocols is designed to evaluate population-based deployment of care coordination at regional level during the period 2011-2017, the other three are service-based protocols addressing: i) Home hospitalization; ii) Prehabilitation for major surgery; and, iii) Community-based interventions for frail elderly chronic patients. All three services have demonstrated efficacy and potential for health value generation. They reflect different implementation maturity levels. While full coverage of the entire urban health district of Barcelona-Esquerra (520k inhabitants) is the main aim of home hospitalization, demonstration of sustainability at Hospital Clinic of Barcelona constitutes the core goal of the prehabilitation service. Likewise, full coverage of integrated care services addressed to frail chronic patients is aimed at the city of Badalona (216k inhabitants).MethodsThe population-based analysis, as well as the three service-based protocols, follow observational and experimental study designs using a non-randomized intervention group (integrated care) compared with a control group (usual care) with a propensity score matching method. Evaluation of cost-effectiveness of the interventions using a Quadruple aim approach is a central outcome in all protocols. Moreover, multi-criteria decision analysis is explored as an innovative method for health delivery assessment. The following additional dimensions will also be addressed: i) Determinants of sustainability and scalability of the services; ii) Assessment of the technological support; iii) Enhanced health risk assessment; and, iv) Factors modulating service transferability.DiscussionThe current study offers a unique opportunity to undertake a comprehensive assessment of integrated care fostering deployment of services at regional level. The study outcomes will contribute refining service workflows, improving health risk assessment and generating recommendations for service selection.Trials registrationNCT03130283 (date released 04/06/2018), NCT03768050 (date released 12/05/2018), NCT03767387 (date released 12/05/2018).</p

Evaluation of integrated care services in Catalonia: population-based and service- based real-life deployment protocols

Background: Comprehensive assessment of integrated care deployment constitutes a major challenge to ensure quality, sustainability and transferability of both healthcare policies and services in the transition toward a coordinated service delivery scenario. To this end, the manuscript articulates four different protocols aiming at assessing large-scale implementation of integrated care, which are being developed within the umbrella of the regional project Nextcare (2016-2019), undertaken to foster innovation in technologically-supported services for chronic multimorbid patients in Catalonia (ES) (7.5 M inhabitants). Whereas one of the assessment protocols is designed to evaluate population-based deployment of care coordination at regional level during the period 2011-2017, the other three are service-based protocols addressing: i) Home hospitalization; ii) Prehabilitation for major surgery; and, iii) Community-based interventions for frail elderly chronic patients. All three services have demonstrated efficacy and potential for health value generation. They reflect different implementation maturity levels. While full coverage of the entire urban health district of Barcelona-Esquerra (520 k inhabitants) is the main aim of home hospitalization, demonstration of sustainability at Hospital Clinic of Barcelona constitutes the core goal of the prehabilitation service. Likewise, full coverage of integrated care services addressed to frail chronic patients is aimed at the city of Badalona (216 k inhabitants). Methods: The population-based analysis, as well as the three service-based protocols, follow observational and experimental study designs using a non-randomized intervention group (integrated care) compared with a control group (usual care) with a propensity score matching method. Evaluation of cost-effectiveness of the interventions using a Quadruple aim approach is a central outcome in all protocols. Moreover, multi-criteria decision analysis is explored as an innovative method for health delivery assessment. The following additional dimensions will also be addressed: i) Determinants of sustainability and scalability of the services; ii) Assessment of the technological support; iii) Enhanced health risk assessment; and, iv) Factors modulating service transferability. Discussion: The current study offers a unique opportunity to undertake a comprehensive assessment of integrated care fostering deployment of services at regional level. The study outcomes will contribute refining service workflows, improving health risk assessment and generating recommendations for service selection. Trials registration: NCT03130283 (date released 04/06/2018), NCT03768050 (date released 12/05/2018), NCT03767387 (date released 12/05/2018)

integrated care for complex chronic patients

Background: In 2006, 35% - 40% of the population in the EU aged > 65 years reported a longstanding health problem and one in four currently receives medical long-term treatment. In Catalonia, data from the 2011-2015 health plan reported that about 30% of the general population has at least one chronic disorder. It is widely accepted that this increasingly important group of the population may suffer frequent unexpected hospital admissions or emergency room visits because of clinical or social circumstances triggering adverse outcomes. Accordingly, the Complex Chronic Patient (CCP) is defined as a patient with at least one+ chronic diseases, comorbidities, frail (due to social, economic and/or clinical factors), usually elderly, and who consumes a very high level of health resources. Although CCPs comprise about 5% of the general population, their health care needs consume an estimated 40% plus of all hospital admissions. Methods: CONNECARE (H2020-PHC-2015-689802) aims to develop and evaluate a new organizational model to enable integrated care of CCPs, supported by technological solutions following an adaptive case management approach. From the CCP's perspective, different healthcare professionals are central to patients' care: the general practitioners, specialist doctors, other hospital staff, and social workers. Moreover, the carers, unpaid relatives or friends, who typically deliver the majority of care that CCPs require, are indispensable. The CONNECARE integrated care organizational model will facilitate collaboration and communication among healthcare professionals, patients and their carers through integrated technological solutions in which the patients play a central role. CONNECARE will also support and empower patients for self-management, by providing them recommendations and suggestions according to continuous monitoring of their activities. CONNECARE will be deployed in three regions: Catalonia (Spain), Israel, and Groningen (the Netherlands). Results: The CONNECARE integrated care solution is built upon the experience of on-going large-scale deployment programs in each of the participating sites and the inclusion of the main stakeholders in the process (healthcare professionals, patients, carers, insurance companies, and policy makers). Therefore, a co-design methodology has been established to capture the feed-back of all actors in the integrated care process. Three clinical studies have been defined for field-testing the CONNECARE solution that will then be performed and evaluated (October 2016 to March 2019) in the three regions: community-based management of CCP, and integrated management of patients undergoing surgical procedures with a specific use case for pre-habilitation of high risk candidates for complex abdominal surgical procedures –which will only be performed and evaluated in Barcelona. The purposes of the clinical studies are: (i) assessing health value generation of the CONNECARE solution; (ii) enabling its refinement and fine tuning during the last six-month period; and (iii) generating guidelines for transferability of CONNECARE achievements to other sites. Conclusions: The ambition of CONNECARE is to co-design, develop, deploy, and evaluate a novel integrated care services model supported by a smart and adaptive case management system for better care coordination and self-management of CCPs. Pragmatic clinical trials will be held in the three sites to assess the health value generation of the CONNECARE solution. Guidelines for the transferability of CONNECARE achievements to other sites will be developed. This will save European healthcare organizations huge sums whilst improving patient outcomes

Assessment of the effectiveness, socio-economic impact and implementation of a digital solution for patients with advanced chronic diseases : the ADLIFE study protocol

Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach

Evaluation of integrated care services in Catalonia: Population-based and service-based real-life deployment protocols

Background: Comprehensive assessment of integrated care deployment constitutes a major challenge to ensure quality, sustainability and transferability of both healthcare policies and services in the transition toward a coordinated service delivery scenario. To this end, the manuscript articulates four different protocols aiming at assessing large-scale implementation of integrated care, which are being developed within the umbrella of the regional project Nextcare (2016-2019), undertaken to foster innovation in technologically-supported services for chronic multimorbid patients in Catalonia (ES) (7.5 M inhabitants). Whereas one of the assessment protocols is designed to evaluate population-based deployment of care coordination at regional level during the period 2011-2017, the other three are service-based protocols addressing: i) Home hospitalization; ii) Prehabilitation for major surgery; and, iii) Community-based interventions for frail elderly chronic patients. All three services have demonstrated efficacy and potential for health value generation. They reflect different implementation maturity levels. While full coverage of the entire urban health district of Barcelona-Esquerra (52

Rare coding variants in PLCG2, ABI3, and TREM2 implicate microglial-mediated innate immunity in Alzheimer's disease

We identified rare coding variants associated with Alzheimer’s disease (AD) in a 3-stage case-control study of 85,133 subjects. In stage 1, 34,174 samples were genotyped using a whole-exome microarray. In stage 2, we tested associated variants (P<1×10-4) in 35,962 independent samples using de novo genotyping and imputed genotypes. In stage 3, an additional 14,997 samples were used to test the most significant stage 2 associations (P<5×10-8) using imputed genotypes. We observed 3 novel genome-wide significant (GWS) AD associated non-synonymous variants; a protective variant in PLCG2 (rs72824905/p.P522R, P=5.38×10-10, OR=0.68, MAFcases=0.0059, MAFcontrols=0.0093), a risk variant in ABI3 (rs616338/p.S209F, P=4.56×10-10, OR=1.43, MAFcases=0.011, MAFcontrols=0.008), and a novel GWS variant in TREM2 (rs143332484/p.R62H, P=1.55×10-14, OR=1.67, MAFcases=0.0143, MAFcontrols=0.0089), a known AD susceptibility gene. These protein-coding changes are in genes highly expressed in microglia and highlight an immune-related protein-protein interaction network enriched for previously identified AD risk genes. These genetic findings provide additional evidence that the microglia-mediated innate immune response contributes directly to AD development