If you followed our posts New online surveys launched and Carrying out qualitative research under lockdown: PROCare4Life telematics Interviews and Workshops you will know that during the months of May to August 2020 the PROCare4Life project team brought older people, caregivers, health and care professionals and different European stakeholders together to identify different needs and opinions to co-design PROCare4Life services with our designers and developers.
In order to gather this information, the PROCare4Life consortium adopted a strategy of joint research and a study with a mixed qualitative/quantitative design was applied, including online surveys, interviews and workshops. In total 90 patients, 77 caregivers, 20 health and care professionals (1 neurologist, 5 physiotherapists; 3 psychologists; 3 speech therapists; 3 nurses; 2 social workers; 2 educational trainers; 1 music therapist) and 30 stakeholders (8 market specialists; 8 decision makers; 8 academic persons; 6 media actors) took part.
Thanks to this study we have identified:
• Opinions and needs of users during their healthcare process:
“My vital objective right now is to be able to maintain my autonomy. Memory difficulties to perform or complete tasks and communication problems, those are my main barriers” – Patient interview
“I just do not feel like doing those activities I used to; I need encouragement to make them” – Patient interview
“It is complicated, emotionally and logistically. Many hours of care. Since diagnosis, I only leave house for important things, so, any support is more than welcome” – Caregiver interview
“To have a multidisciplinary team connected; sharing information would facilitate our daily work and intervention. It would save time, money and effort” – Health and care professionals workshop
• How PROCare4life can fit people’s needs and meet demands:
“You can’t go against this disease, so you have to learn to live with it.. even if it is with some assistance in your activities”- Patient interview
“I would use a system like this one for health reasons … a device that would help me to take better care of myself” – Patient interview
“I would use anything that would facilitate my tasks as a carer.. and that would be accessible and easy to use for both of us” – Caregiver interview
“A systems that gives us information about patient’s physical, emotional or cognitive state.. and alerts us about any vulnerability and it allows to introduce changes in the habits of people, would improve our interventions and personalized care” – Health and care professionals workshop
• Aspects to be considered to achieve success:
“Define your users’ needs, ideate innovative solutions, prototype and test them from the beginning”; – Academic member interview
“Get everyone, not just health related, to work collaboratively to improve patients’ care through monitoring, considering their complex needs” – Decision maker interview
“Needs to be appealing and affordable, otherwise it will not work. Also simplicity, to educate in the form of training and ensure no additional work is involved. The aim is to generate demand instead of offer” – Market specialist interview
“To measure this system’s real impact check for the changes that happened to the people that used it” – Media actor interview
Main results from this fieldwork have already been analyzed, shared among consortium members in order to study their implications and have appeared summarized in the contents of D2.2 ‘User requirements and PROCare4Life scenarios’.
Stay tuned to our News section as the full results of the study will be published later this year!
This has been one of the deliverables already approved by the European Commission in the 1st review meeting held online on 10 December last year.
In 2020 we were very active. For the coming year we will continue the work we started throughout the implementation of our pilots. Some of the users in this study will remain with us in next phases and we will put into practice some lessons learnt from conducting research under this pandemic caused by COVID-19 but work goes on!
For more details of this study protocol you can consult our paper at JMIR Publications.
This 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.