Two online surveys aimed at gathering quantifiable data from Parkinson’s, Alzheimer’s and dementia patients launched
The Association Parkinson Madrid and the PROCare4Life Consortium have created 2 new online surveys. These are aimed at gathering quantifiable data from Parkinson’s, Alzheimer’s and dementia patients and their formal or informal caregivers, regarding the dynamic interplay between their daily life habits, needs and/or behaviours and issues that could influence their health, well-being and quality of life to inform ICT systems.
The anonymous surveys, will collect information from at least 150 existing end users’ from a variety of social and health European systems with different cultural backgrounds and will be available in the following languages: English; German; Italian; Portuguese; Romanian and Spanish.
To achieve these figures, different channels will be used to access the sample users: project partner’s data bases; national patients’ associations; PROCare4Life partners’ networks and social media channels (i.e. Twitter; Facebook; LinkedIn; Google+); face to face interactions with patients admitted to hospitals and clinics and their caregivers.
Through a series of questions written in accessible language, participants will be asked about their existing symptoms, activities or situations as patients or caregivers, in addition to their experience(s) and acceptance of technologic devices as object sensors, tablets, cameras, wearable devices and/or applications for activity and/or behaviour tracking. It is hoped that patients will have a better understanding of their health status and caregivers will gain insights into their own wellbeing and workload.
The knowledge gained from this survey will help the research team understand which devices may be used in the PROCare4Life project and how wearable devices can be effectively used in health care.
The study will also give participants a chance to reflect about their more frequent symptoms (or those of the person they care for), daily tasks and their experience of using various wearable devices and/or behaviour tracking apps.
In the coming months, the project will continue to work and conduct qualitative research (workshops, interviews) with patients, caregivers, health professionals and other key stakeholders from the ecosystem and across Europe. Through these techniques, they will express their experiences related to the care process; desired characteristics of the proposed platform for checking health status, received notifications and suggestions, communicating and knowledge acquisition. They will also provide us with opinions on the most appropriate content to be delivered along with strategies to overcome barriers to the acceptability of the proposed solution.
In this participative co-creation process, interviewees will be balanced in terms of chronic conditions, mental abilities, frailty, age, gender and socio-economic status. In particular, gender differences will be taken into account.
This is part of the larger scale research in project PROCare4Life, which investigates how data from wearable devices can be used by patients, caregivers and socio health professionals.
PROCare4Life’s innovative approach to self-care and integrated care is based on its social eHealth ecosystem that promotes autonomy, security and time-efficiency. This work is being carried out within Work Package 2 of the project – User, System and Ethical Considerations, which main objectives are to investigate potential end users’ key personal, social, health-related and psychological factors that influence their daily life in order to define requirements for robust, meaningful, substantiated scenario and use cases.
View surveysThis post was written by Mayca Marín at Asociación Parkinson Madrid (Spain), who is part of the PROCare4Life project. Asociación Parkinson Madrid (APM) leads Work Package 2 on user requirements and scenarios. APM also contributes to the development of the pilots providing users and deciding on the assessment protocols to be used to collect feedback and impact of the project.