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Taking the user perspective seriously

The SmartCare Users’ Advisory Board

The Users’ Advisory Board (UAB) was set up to act as advisor by focusing on the user perspective and liaising at European and national level through its organisations and networks. The objectives of the UAB are:

  • to gather information and reflect on all user-related aspects in SmartCare
  • to ensure that integrated eCare services are developed with users and not only for users
  • to support exchange and sharing of practices among deployment sites from a user perspective
  • to disseminate project results.

Six organisations representing the interests of older people, informal or professional carers, nurses, patients and insurers are engaged in the UAB:

  • AGE Platform Europe (AGE)
  • European Federation of Nurses Associations (EFN)
  • European Association Working for Carers (Eurocarers)
  • European Patients Forum (EPF)
  • AOK Rheinland/Hamburg
  • International Federation for Integrated Care (IFIC)

 

Visits to SmartCare deployment sites

One of the most important UAB activities in SmartCare are the visits to the nine deployment sites that aim to bring to the project the views and perceptions of SmartCare target groups (older people, patients, health professionals, social workers and informal carers) on the systems of integrated care deployed. Constructive feedback from the UAB will allow deployment site leaders to even better take on board the feedback from the users and facilitate the exchange of practices and experiences between them.

  • South Denmark: A delegation of the project's User Advisory Board, which AGE was part of, had the opportunity to visit a concrete example of what integrated care in Odense, South Denmark, is. The process is supported by the online SharedCare platform aimed to gather health and social care data across specific disease pathways (here for cardiac patients), accessible by both the professionals and by the end users. The platform includes a wealth of information needed to deliver adequate care and keep the patient's history. It showed its great potential to improve the lives of older citizens, and is supported by highly committed professionals. The participants were introduced by the Danish pilot site team to the national health system and the long-standing history interoperability, as well as the SmartCare and the user involvement processes. Then, the visitors had the possibility to visit a rehabilitation center involved in testing the platform. The rehabilitation center uses new technologies also to link with users who live far or who cannot or do not wish to move to the rehabilitation center. The visitors were finally able to meet with professionals in the hospital, another key actor in the process, and exchanged their experiences from using the new system. While implementing fully integrated care in practice requires time and to overcome several challenges (separate budgets, levels of responsibility, multiplicity of stakeholders to involve and commit to the initiative), we could see the huge potential of what integrated care means for both professionals and end users, for better quality of care (source: AGE Platform Europe website).
  • Kraljevo, Serbia: On 17th September 2015 AGE organised the visit of the UAB to Kraljevo, in Serbia. We could meet both social care professionals at the Centre for Social Work and doctors and nurses at the Health Centre. The day included visits to the homes of older people, where measurements of their vital signs were taken - often with the help of their carers -and sent through smartphone. This data helps health and social care centres to monitor the situation of the person and take decisions on the care plan established between both services. This improves the quality of the care delivered and allows the older person to live more independently. AGE highlighted the importance of adopting a wide policy approach that places integrated care in larger age-friendly policy strategies to make independent living possible in the urban environment (source: AGE Platform Europe website).
  • Attika, Greece: On 29th October, a new visit took place in in the Attica region, in Greece. This day-long visit, which was led by the European Federation of Nurses, allowed AGE and other visitors to meet health and social care professionals and visit older people's homes. The discussions with older users – most of them suffering from diabetes – and also with their informal carers – members of the family – proved to be very useful to understand to what extent the systematic measurement of vital signs, transmitted to the shared social and healthcare platform through tablet, is improving their quality of life. The visit included a discussion with other older people currently involved in SmartCare at the municipality of Palaio Faliro (source: AGE Platform Europe website).

These visits revealed the very positive impact that integrated care has on the quality of life of older people with a chronic health condition. They showed how integrating health and social care can contribute to independent living and to decrease unnecessary hospital admissions. The Board highlighted the need not to underestimate the importance and convenience of personal contact; however, the technologies used to allow older people to monitor their health at home proved to be valuable means to allow independent living and reduce unnecessary care, especially in rural or remote areas where healthcare is not readily available. With all the materials gathered, the Board will be delivering under AGE's leadership a comprehensive document summing up the main observations made, the lessons learnt and the recommendations addressing both the pilots and the policymakers around the delivery of quality user-centred integrated health and social care.

For more information you can contact Borja Arrue from AGE: borja.arrue(at)age-platform(dot)eu.

 

 

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