DEDICATE: proposal for a conceptual framework to develop dementia-friendly Integrated eCare support

Background: Evidence shows that the implementation of Information and Communication Technologies (ICT) enabled services supporting integrated dementia care represents an opportunity that faces multi-pronged challenges. First, the provision of dementia support is fragmented and often inappropriate. Second, available ICT solutions in this field do not address the full spectrum of support needs arising across an individual’s whole dementia journey. Current solutions fail to harness the potential of available validated e-health services, such as telehealth and telecare, for the purposes of dementia care. Third, there is a lack of understanding of how viable business models in this field can operate. The field comprises both professional and non-professional players that interact and have roles to play in ensuring that useful technologies are developed, implemented and used. Methods: Starting from a literature review, including relevant pilot projects for ICT-based dementia care, we define the major requirements of a system able to overcome the limitations evidenced in the literature, and how this system should be integrated in the socio-technical ecosystem characterizing this disease. From here, we define the DEDICATE architecture of such a system, and the conceptual framework mapping the architecture over the requirements. Results: We identified three macro-requirements, namely the need to overcome: deficient technology innovation, deficient service process innovation, and deficient business models innovation. The proposed architecture is a three level architecture in which the center (data layer) includes patients’ and informal caregivers’ preferences, memories, and other personal data relevant to sustain the dementia journey, is connected through a middleware (service layer), which guarantees core IT services and integration, to dedicated applications (application layer) to sustain dementia care (Formal Support Services, FSS), and to existing formal care infrastructures, in order to guarantee care coordination (Care Coordination Services, CCS). Conclusions: The proposed DEDICATE architecture and framework envisages a feasible means to overcome the present barriers by: (1) developing and integrating technologies that can follow the patient and the caregivers throughout the development of the condition, since the early stages in which the patient is able to build up preferences and memories will be used in the later stages to maximise personalization and thereby improve efficacy and usability (technology innovation); (2) guaranteeing the care coordination between formal and informal caregivers, and giving an active yet supported role to the latter (service innovation); and (3) integrating existing infrastructures and care models to decrease the cost of the overall care pathway, by improving system interoperability (business model innovation)

A torque-based method demonstrates increased rigidity in Parkinson’s disease during low-frequency stimulation

Low-frequency oscillations in the basal ganglia are prominent in patients with Parkinson’s disease off medication. Correlative and more recent interventional studies potentially implicate these rhythms in the pathophysiology of Parkinson’s disease. However, effect sizes have generally been small and limited to bradykinesia. In this study, we investigate whether these effects extend to rigidity and are maintained in the on-medication state. We studied 24 sides in 12 patients on levodopa during bilateral stimulation of the STN at 5, 10, 20, 50, 130 Hz and in the off-stimulation state. Passive rigidity at the wrist was assessed clinically and with a torque-based mechanical device. Low-frequency stimulation at ≤20 Hz increased rigidity by 24 % overall (p = 0.035), whereas high-frequency stimulation (130 Hz) reduced rigidity by 18 % (p = 0.033). The effects of low-frequency stimulation (5, 10 and 20 Hz) were well correlated with each other for both flexion and extension (r = 0.725 ± SEM 0.016 and 0.568 ± 0.009, respectively). Clinical assessments were unable to show an effect of low-frequency stimulation but did show a significant effect at 130 Hz (p = 0.002). This study provides evidence consistent with a mechanistic link between oscillatory activity at low frequency and Parkinsonian rigidity and, in addition, validates a new method for rigidity quantification at the wrist

Proceedings of the 11th Annual Deep Brain Stimulation Think Tank: pushing the forefront of neuromodulation with functional network mapping, biomarkers for adaptive DBS, bioethical dilemmas, AI-guided neuromodulation, and translational advancements

The Deep Brain Stimulation (DBS) Think Tank XI was held on August 9–11, 2023 in Gainesville, Florida with the theme of “Pushing the Forefront of Neuromodulation”. The keynote speaker was Dr. Nico Dosenbach from Washington University in St. Louis, Missouri. He presented his research recently published in Nature inn a collaboration with Dr. Evan Gordon to identify and characterize the somato-cognitive action network (SCAN), which has redefined the motor homunculus and has led to new hypotheses about the integrative networks underpinning therapeutic DBS. The DBS Think Tank was founded in 2012 and provides an open platform where clinicians, engineers, and researchers (from industry and academia) can freely discuss current and emerging DBS technologies, as well as logistical and ethical issues facing the field. The group estimated that globally more than 263,000 DBS devices have been implanted for neurological and neuropsychiatric disorders. This year's meeting was focused on advances in the following areas: cutting-edge translational neuromodulation, cutting-edge physiology, advances in neuromodulation from Europe and Asia, neuroethical dilemmas, artificial intelligence and computational modeling, time scales in DBS for mood disorders, and advances in future neuromodulation devices

aDBS: adaptive neuromodulation for Parkinson's disease

aDBS represents the necessary advance in DBS therapy for Parkinson’s disease. The idea is innovative because it changes completely the philosophy of neurostimulation, starting to use neurological signals for optimizing therapies. The adaptive approach is completely new in the field of neuromodulation where neurological signal were only used to understand brain functions. Conversely, the use of neuronal signals in aDBS goes beyond the pure research providing the link between neuronal functions and patient’s clinical condition. Another innovative point resides in the use of the neuronal signals directly recorded through the electrodes implanted for DBS. This implies that no adjunctive hardware is required to apply aDBS instead of normal DBS. Finally, the algorithms that control the adaptation of DBS parameters in aDBS are designed patient by patient in a view of personalized healthcare. Each patient experience different symptoms and different timing of the symptoms. aDBS is not standardized, but it is designed on the patient

Methodology and workflow to perform the Data Protection Impact Assessment in healthcare information systems

Background: The General Regulation on Data Protection (GDPR) modernizes and harmonizes personal data protection laws across the European Union, affecting all economic sectors including the healthcare industry. The new regulation introduces two specific duties: the Record of Processing Activities (ROPA) and, for each high-risk processing, the Data Protection Impact Assessment (DPIA). Currently, there are no specific DPIA methodologies for the healthcare environment, but only broad methodologies applicable in all economic sectors. Objectives: This work aims to propose a methodology to perform DPIA for healthcare information systems, considering the specific constraints and criticisms posed by the heterogenous and highly sensitive nature of data and software use in hospitals. Methods: We first performed a GDPR analysis and an examination of other sources regarding DPIA. This analysis led to the identification of issues related to GDPR application in the healthcare environment. We then developed a workflow for DPIA execution, and implemented a software to apply it in a real environment. The methodology was applied on 11 softwares and devices already in use in the Trieste area, Italy. Results: The most important issue identified in the analysis is the definition of \u201cprocessing activity\u201d, which was overcome by focusing the methodology on the information system processing the data instead of the processing activity per se. We therefore designed a workflow for the risk assessment of an information system establishing that the DPIA shall be performed after the purchase, usually a bid with strict IT security requirements of the information system, but before its deployment in the real environment. The validation of the developed software to implement the workflow on the 11 softwares showed the ability of the proposed workflow to perform the DPIA, and to uncover some important issues in the examined systems. Conclusions: The proposed methodology can be applied to perform DPIA in the healthcare environment by supporting risk evaluation and management, focusing on each software component added to the healthcare information system