Co-creation in Daycare: Developing MedGUIDE together with the primary end-users.

[By Bas Steunenberg from HogeSchool Utrect – March 2019 ]

In the beginning of March we had a so called ‘’co-creation session’’ with the primary end-users  that are involved in the MedGUIDE project. These were persons with mild to moderate cognitive problems, still living at independently at home and still self-managing their own medication intake. We visited a daycare center in Amersfoort, a medium-sized city in the middle of the Netherlands. This daycare center was opened 5 days a week and provided visitors daily activities, such as reading together, playing games, theme discussions on different topics, drinking coffee. They also receive a hot meal in the afternoon. Older people who joined this daycare are there, because of mild to severe mental and cognitive problems. Some of them are on a waiting-list to be admitted to nursing home care. This because, living at home is no longer acceptable for them or for their next of kin. Therefore, to relieve the burden for the next of kin or informal carers they are allowed to visit this daycare center.

That Friday morning the large number of people present outnumbered our expectations. After a short introduction about MedGUIDE, the purpose of our visit was explained. In addition, we asked who would like to join our session on MedGUIDE. The aim of the session was, that via co-creation, older adults could experience the MedGUIDE concept by testing it by themselves. They were asked to reflect on technical issues, so their findings can be used to fine-tuned the prototype. We asked the end-users some questions about the perceived added value, usability and usefulness. We also asked them about their opinions on specific functionalities. The participants could freely explore the system, while thinking aloud. Furthermore, participants were we asked to perform some specific tasks.

Prior to the testing-phase, we first had an interesting discussion on privacy issues and willingness of the older adults about sharing the data regarding their activities. This  discussion started, because some attendants of the daycare asked us what we do with the gathered data. They were wandering how secure the MedGUIDE data-system is. We assured the older adults that everything in our system is safe and secure, according to European standards and legislations.

Other issues related to the number of sensors used by MedGUIDE. “’why’’ all these sensors”. It wasn’t  clear why there should be sensors in the toilet and in the bedroom?  An older lady stated firmly: ‘’I do not take my pills while sitting on the toilet’’. We explained the purpose of this sensors and the necessity that these sensors can also detect and send alerts when something’s deviates from the normal daily pattern. There were some questions about the bed sensor and what it measures. Some elderly had worries about the privacy in the bedroom. We explained that these sensors only measured ‘’time-in-bed’’ and not ‘’activities in bed’’. From the discussion with the elders in this meeting, we experienced that it is highly relevant to give good explanations about the activities measured, how and why this is measured.

Furthermore, the participants wanted to know  whether all sensors in MedGUIDE were needed or that it is possible to leave out, for example the toilet-sensor from the sensor-network. Being a researcher with a medical background, could not answer this technical question. Therefore, we have taken it as a requirement from this session to our meeting with the IT-developers in the MedGUIDE project. Finally, we had the question ‘’who is in charge of the MedGUIDE-system?’’ Or in other words, is it possible to start with the MedGUIDE system without the permission or consent of the older adult? In this case, children or formal care will purchase and install the MedGUIDE system without acknowledgement of the older adult. We stated that  in principle  this is possible, but that this is not the purpose from MedGUIDE. It will also depend on the cognitive deterioration and how aware the older adults still are of their situation. Additionally, there were some concerns that data could be given to people who do not have a legal right to read it. We stated that the older adults should be able to recognize who has access to their MedGUIDE system.

We concluded that based on their concerns, we shall put a privacy-disclaimer, in the MedGUIDE protocol and on the website. This to provide some statements or guidelines about the MedGUIDE system security. Also to open the debate about the privacy of the older adult. Next to this, the privacy and security issues will be addressed in the installation phase or protocol of MedGUIDE as well in the training for all the end-users. Successful application of monitoring technologies depends on receptivity of potential users and taking notice of their wishes, needs and of course their privacy!