Use Cases for Informal Care

Health care systems in the developed world face challenges because of rising expenditures and aging population. The UseCare AAL project aims in contributing with a solution to these challenges. The solution attempts to enable patients to participate actively in their own care, with the support of informal caregivers. The project had partners in Israel, Norway and Switzerland (2015-2017) and aimed at implementing and testing self-management tools for people with chronic diseases. The UseCare AAL solution consists of two elements: 1) self-monitoring devices, and 2) a web platform. The users are equipped with various self-monitoring devices, based on their diagnoses, and the data is transferred to the web platform via Bluetooth. They can access the data via the web platform and register data manually. The solution aims at behavioral change based on continuously updated information about nutritional advice, exercise, blood pressure, medication adherence etc., with the support of an informal caregiver. In Norway, a physiotherapist recruited 12 patients at the Neuro-Orthopedic and Rehabilitation clinic, University Hospital of North Norway. The informal caregivers of the participating users were also invited to be part of the project. All recruited patients had been diagnosed with hearth failure. During a two-hour information and training session, the patients, together with their informal caregivers, learned about the web-platform and the self-monitoring devices (a scale, an activity tracker and a blood pressure device). We recommended to the users to use the devices every day, and access their data via the platform. Through the web-platform users had also access to advice about nutrition, exercise videos, a knowledge database, target values for the health related parameters, and a medication list. The aim of the project was to study the use of the self-management system. We collected data regarding the user experience (usability, user-friendliness, and satisfaction), quality of life, and other health-related parameters. The users used the SENACA system for 100 days. Even though the introduction session only lasted for two hours, it was adequate and most of the users were able to use the services after this. Users were satisfied with the platform, but some found the platform too slow or too complicated. They used the self-monitoring devices every day, except for shorter periods. Most users found the self-monitoring devices easy to use. The self-monitoring devices gave the users continuously updated data about activity, blood pressure and weight. All three devices were quite easy to use; however, users were sceptical about the activity tracker, because they found it to be not precise, and without advanced functions. During the 100 day of follow-up, the users reported that sometimes they had trouble transferring data from the devices to the servers. Normally they would just do a new measurement or fill in data manually. The users liked the graphical presentation of measurement in the SENACA web program. The users activated the services at the web platform. They had mixed feelings about the usability and usefulness of the services. Even though they see the point of eating healthy, some found the service to be too time consuming, while some other users were satisfied with it. They rarely used the knowledge base, but some appreciated reading about the diseases. In general, they found the medication list function to be time consuming, but users who were changing medicine and doses often believed it was useful. The users evaluated the SENACA system positively, and said it inspired them to make changes in their lifestyle. Many reported that the activity tracker, nutrition services and scale motivated them to live a healthier life. Overall, we see that the users were managing to keep their weight steady during the pilot period. Some level of day-to-day variation on individual level might be related to fluid accumulation due to the Heart Failure, but the study was not designed for identifying these type of incidents. Blood pressure, both systolic and diastolic has also remained stable. The same was observed for physical activity, where we found a steady number of steps over the period of the study. Especially the stability regarding the level of physical activity can be both positive and negative. It can be very positive to maintain a certain level of physical activity over 100 days, but at the same time, this is of little use if the level is low to begin with.

USECARE focuses on persons with chronic or non-communicable diseases (NCD) and morbidity compression by primary and secondary prevention by behavior change (self-management). The project targets both patients as primary end-user and informal caregivers (family, neighbors, friends) as secondary end-user. The target groups are people with the following conditions: Heart Failure NYHA ½, early diagnosed Diabetes type2, COPD Gold 1, Sleep Apnea, Osteoporosis, Depression. Informal Caregivers (Carers) as secondary endusers, currently spending on average > 20h/week on Health Home Care (HHC) and thus mostly had to reduce a previously regular job employment.This target group has been quantified as on average >3% of the European population (est. 2011), in the case of the participants joint populations (Participating countries are Poland, Norway, Spain, and Switzerland) 3.6% or > 3000000 citizens. USECARE intends to show how current ICT can add to connectivity of Informal Caregivers, sensitize the public as ultimate stakeholder for adequate remuneration, and add a stress reduction solution for both patients and carers. The current SENACA solution is technically based on the 2net Platform, a robust cloud-based system designed to be universally-interoperable with different medical devices and applications, enabling end to-end wireless connectivity while allowing medical device users and their physicians or caregivers to easily access biometric data. In cooperation with participating SMEs we will in addition to senaca.ch set up a pilot network with further 4 localized sites senaca.no, senaca.es, senaca.pl. In each of the four participating countries a user group of 15 patients (primary end-users) and 15 respective proxy-patients or carers (secondary end-users) will be recruited, provided and trained with the prototype self-management system, preconfigured according to initial assessment of end-user.