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mhealth platform for Parkinson’s disease management

Periodic Reporting for period 2 - PD_manager (mhealth platform for Parkinson’s disease management)

Reporting period: 2016-07-01 to 2018-03-31

Parkinson’s disease (PD) is a complex chronic disease, individual disorder that most people live with for many years/decades. More than one million people live with PD in Europe today and this number is forecast to double by 2030. It is the second most common neurodegenerative disease (after Alzheimer) and its prevalence will continue to grow as the population ages. Due to the disease complexity a multidisciplinary management involving several professions working together (neurologists, physiotherapists, speech and language therapists, occupational therapists, dieticians), is important to ensure that the patient retains his/her independence and continues to have the best quality of life possible. In the same context the role of the caregiver is of paramount importance.
The main objective of the PD_manager project is to build and evaluate an innovative mHealth ecosystem for PD management. PD_manager is a research project funded by the European Commission under the Horizon 2020 programme aimed at “Empowering citizens to manage their own health and disease will result in more cost-effective healthcare systems by improving utilisation of healthcare, enabling the management of chronic diseases outside institutions, improving health outcomes, and by encouraging healthy citizens to remain so.”
We have implemented all specified goals. We have disseminated our work widely, through academic talks and publications, and also through public-facing activities and working with journalists. Our efforts have led to:
• more than 40 papers and conference abstracts published describing our contributions and presented in various venues,
• update of the project web site with all the relevant information about the project, including papers and other dissemination materials (http://www.parkinson-manager.eu/)
• constant twitter activities (https://twitter.com/pd_manager_proj)
• mentions of the project in various public-facing outlets, and at various keynote talks.
The project ran fluently, with smooth collaboration among partners, and we were able to implement and experiment with more sophisticated app development. Prototype apps for data collection and management of PD have been implemented and evaluated.
The rest of this section describes in more detail the project results.
WP1 organized communication within consortium, efficiently administered project budget, monitored partners activities, released deliverables respecting project constraints and ensuring results quality, handled periodic reports, reviews, amendments and risk monitoring.
WP2 established communication channels and increased the awareness for the project (website, twitter, articles), disseminated the project through various events, conferences, etc., published the project outcomes in prominent (Plos One) and in open access journals (Healthcare Tech. Letters, BMC-Trials, Nutrients), made Data management plan (based on FAIR), Exploitation plan (modular exploitation paths) and IPR definition.
WP3 defined and analysed user (prescribing clinicians, patients, caregivers) needs, decomposed current PD-related users’ tasks, studied expert diagnostic behavior, policy & ethics issues to assess implementation potential of the system. Computational models were developed and validated to help clinicians and caregivers to search and evaluate information and state of the art analysis of methods, approaches etc. used for WP4 studies was done. Open Architecture design was based on FI-WARE.
In WP4 we performed the first clinical study with PD patients. Based on this data, motor and non-motor symptoms analysis has been performed. Cognitive and speech mobile apps were developed. Moreover, a mobile app was developed to track the nutrition habits and medication therapy of the patients. Also we have developed a gamification package for physiotherapy including the “Fruit Picking” game (for improvement of patient’s reach) and the “10 cubes” game (for improvement of fine motoric). The Educational gallery has been developed with 11 recorded videos reflecting the most common situations/symptoms of the patient suffering from PD. Finally, WP4 resulted in the Knowledge Management Platform based on the principles of open architecture approaches and the Internet of Things concept.
In WP5 the patients’ data were mined get better insight in the disease and new knowledge about it was extracted. Decision support task resulted in medication change models based on a combination of data mining results and expert modelling. These models, built in accordance with medical guidelines, are complete, robust, consistent and transparent. Mobile apps were developed and tested, which are interfaces through which all users interact with the PD_manager system and were used in the Big Pilot study in WP6.
WP6 organized and implemented a large Pilot activity with 133 PD patients, evaluated the PD_manager intervention and economically evaluated the resource implications and costs of using PD_manager from the perspective of the health service provider.
WP7 documented all the ethical procedures and documents that were used in the studies with human participants.
PD_manager went beyond the state of the art, since:
• we used light and unobtrusive sensors for data capturing, especially the pressure insole sensors haven’t been use in that context in the past,
• we progressed well towards developing more accurate, specific and sensitive data analysis and decision support models based on past experience and background knowledge with the aim 1) to decide when medication change is needed (mainly based on the assessment of fluctuations and in the overall worsening of the patients) and 2) to automatically suggest an optimal medication plan that clinicians will approve,
• we progressed in all parts of PD_manager’s holistic mhealth approach by combining several aspects for PD management: motor and non-motor symptoms detection, monitoring and evaluation, nutrition and gamification apps, educational gallery, decision support to manage the change of treatment, etc.
The impacts of the PD_manager project to the management of Parkinson's disease are listed below:
• new knowledge about the disease (factors affecting rapid progression and medication decisions) through data mining studies
• increased confidence in decision support systems for disease management by providing reliable medication suggestions, based on data collected during daily activities
• strengthened evidence and improved knowledge about PD patients’ and caregivers’ behaviour related to disease management with the support of wearable devices facilitating the creation of new personalised behavioural interventions
• improving the PD management by providing to the clinicians evaluation of patients’ symptoms and adherence to prescribed management plans between visits
• improved interaction between patients, their relatives and caregivers and the care providers facilitating more active participation of patients and relatives in PD care
• promotion of the multidisciplinary team approach for PD management which is constantly gaining interest and is recommended for all chronic diseases
• high levels of compliance in connected health
• increased level of education by involving PD patients and their caregivers in personalised care mhealth solutions
The outputs of the PD_manager project are organized within the modules. For each module PD_manager has come up with an innovation (see Figure 1 for details).