23 research outputs found

    Functions of GDNF/Ret signaling in models of autosomal recessive Parkinson’s disease

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    Functions of GDNF/Ret signaling in models of autosomal recessive Parkinson’s disease

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    Management of personalised guideline-driven care plans addressing the needs of multi-morbidity via clinical decision support services

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    Introduction: The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. C3-Cloud project aims to build an integrated care platform for addressing the growing demand for improved health outcomes of multimorbid and long-term care patients. Theory/Methods: C3-Cloud has established an ICT infrastructure enabling continuous coordination of patient-centred care activities by a multidisciplinary care team MDT and patients/informal care givers. The Coordinated Care and Cure Delivery Platform C3DP allows, collaborative creation and execution of personalised care plans for multi-morbid patients through systematic and semi-automatic reconciliation of clinical guidelines. Clinical decision support CDS systems implementing flowcharts from evidence based clinical guidelines are integrated to present suggestions for treatment goal and activities e.g. medications, follow-up appointments, diet, exercise, lab tests. Pilot site local care systems are integrated with the C3DP via the technical and semantic interoperability platform to facilitate informed decision making. Active patient involvement is realized through a Patient Empowerment Platform presenting personalized care plan to the patient and establishing a continuous bi-way communication with the patient to collect patient observations, questionnaire responses, symptoms and feedback about care plan goals and activities. Results: The following research results have been achieved to enable guideline enabled personalised care plan management for addressing the needs of multi-morbidity: 43 logical flowcharts were designed out of 4 disease guidelines Type 2 Diabetes, Heart Failure, Renal Failure and Depression. 181 CDS rules assessing 166 patient criteria and recommending 154 goal/activity suggestions were implemented as CDS services in GDL covering T2D and RF. 52 reconciliation rules were designed for eliminating contradicting guideline recommendations due to multi-morbidity. 23 HL7 FHIR profiles were defined for representing care plan and patient data. C3DP has been integrated with these CDS services via CDS-Hooks specification to recommend personalised care plan goals and activities. Discussions: In this research, we have successfully implemented an ICT infrastructure enabling guideline-driven integrated care for multi-morbid patients. Although our ICT solution covers all the technical requirements identified by clinical partners, effective implementation of integrated care in real-life care setting requires major changes in organisational responsibilities and care pathways. Conclusions: User-centred design and usability testing have successfully been completed. C3-Cloud pilot application will now be operated in 3 European pilot sites with the participation of 62 MDT members and 1200 multi-morbid patients for 15 months. Lessons learned: There are two main research lines for reconciliation of contradicting guideline recommendations: 1 fully-automated reconciliation via ontology reasoning, 2 manually-crafted reconciliation rules by clinical expert groups. Although first approach is more dynamic, research results are still for very primitive cases and not clinically validated. As we are targeting an industry-ready solution after piloting in real-life settings, we have opted for the second option. Limitations: When a new chronic disease is to be addressed within our platform, reconciliation rules covering all disease combinations have to be re-assessed by the clinical expert group. Suggestions for future research: Fully-automated reconciliation approaches need to be further studied and validated in real-life settings

    A collaborative platform for management of chronic diseases via guideline-driven individualized care plans

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    Older age is associated with an increased accumulation of multiple chronic conditions. The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. Integrated care is a means to address the growing demand for improved patient experience and health outcomes of multimorbid and long-term care patients. Care planning is a prevalent approach of integrated care, where the aim is to deliver more personalized and targeted care creating shared care plans by clearly articulating the role of each provider and patient in the care process. In this paper, we present a method and corresponding implementation of a semi-automatic care plan management tool, integrated with clinical decision support services which can seamlessly access and assess the electronic health records (EHRs) of the patient in comparison with evidence based clinical guidelines to suggest personalized recommendations for goals and interventions to be added to the individualized care plans. We also report the results of usability studies carried out in four pilot sites by patients and clinicians

    Localisation, personalisation and delivery of best practice guidelines on an integrated care and cure cloud architecture : the C3-cloud approach to managing multimorbidity

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    Background: C3-Cloud is an integrated care ICT infrastructure offering seamless patient-centered approach to managing multimorbidity, deployed in three European pilot sites. Challenge: The digital delivery of best practice guidelines unified for multimorbidity, customized to local practice, offering the capability to improve patient personalization and benefit. Method: C3-Cloud has adopted a co-production approach to developing unified multimorbidity guidelines, by collating and reconciling best practice guidelines for each condition. Clinical and technical teams at pilot sites and the C3-Cloud consortium worked in tandem to create the specification and technical implementation. Results: C3-Cloud offers CDSS for diabetes, renal failure, depression and congenital heart failure, with over 300 rules and checks that deliver four best practice guidelines in parallel, customized for each pilot site. Conclusions: The process provided a traceable, maintainable and audited digitally delivered collated and reconciled guidelines

    Reimagining Heliophysics: A bold new vision for the next decade and beyond

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    The field of Heliophysics has a branding problem. We need an answer to the question: ``What is Heliophysics\?'', the answer to which should clearly and succinctly defines our science in a compelling way that simultaneously introduces a sense of wonder and exploration into our science and our missions. Unfortunately, recent over-reliance on space weather to define our field, as opposed to simply using it as a practical and relatable example of applied Heliophysics science, narrows the scope of what solar and space physics is and diminishes its fundamental importance. Moving forward, our community needs to be bold and unabashed in our definition of Heliophysics and its big questions. We should emphasize the general and fundamental importance and excitement of our science with a new mindset that generalizes and expands the definition of Heliophysics to include new ``frontiers'' of increasing interest to the community. Heliophysics should be unbound from its current confinement to the Sun-Earth connection and expanded to studies of the fundamental nature of space plasma physics across the solar system and greater cosmos. Finally, we need to come together as a community to advance our science by envisioning, prioritizing, and supporting -- with a unified voice -- a set of bold new missions that target compelling science questions - even if they do not explore the traditional Sun- and Earth-centric aspects of Heliophysics science. Such new, large missions to expand the frontiers and scope of Heliophysics science large missions can be the key to galvanizing the public and policymakers to support the overall Heliophysics program
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