Putting users at the heart of care: engaging the “cared-for” in integrated innovation

  • Sinigaglia A
  • Neary D
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Abstract summary: Demographic change creates opportunities for social innovations promoting active and healthy ageing. Given the growing demands being placed on care systems, it is essential that healthy life years are extended. The INNOVAGE project is committed to developing, testing and cataloguing social innovations based on a high degree of user involvement and coproduction principles and contributing to older people's wellbeing and quality of life. Through this abstract, INNOVAGE wants to highlight how social innovations in the field of integrated care and healthy ageing need direct user involvement and co-production in order to successfully develop into viable solutions. It also presents for example one particular method - research circles - tested in four EU countries that can be used by researchers to co-produce innovative integrated health and social care solutions. Introduction: Context: Eurostat population projections (1) estimate those aged over 60 will increase by two million people per annum in the coming decades. While the number of persons in need of care will increase, the number of persons available to provide informal and formal support and care will decrease. This means there is a need for innovation in health and wellbeing across the life course. Problem statement: Involving users in the innovation process contributes to successful design and implementation of solutions supporting ageing. There is a growing need to develop common practice allowing researchers to genuinely involve older people in the co-production of innovations in practice, especially in the care system and in social/health care services delivery. Aim: The FP7 project INNOVAGE aims to contribute to the European goal of extending healthy life years (2). Its mission builds on the expertise of researchers, older people and other stakeholders to identify major social innovation approaches to supporting improved quality of life and well-being as people age. Short description of practice change implemented: INNOVAGE reviewed and tested methods of involving older people in innovative service design and delivery, including questionnaires, focus groups, stakeholder fora, advisory boards and pilot tests. These methods are described in the INNOVAGE guidelines on involving users in social innovation development (3). With this abstract, INNOVAGE wants to highlight one particular method - research circles - tested and implemented successfully in four EU countries. Although tested in the housing sector this has strong application in integrated care settings as it engages with practitioners and volunteers who are embedded in the relevant context. INNOVAGE research circles engaged volunteer practitioners/researchers in a joint effort to develop/collect new knowledge to inform changes in a specific situation. The aim was to nurture engagement and communication among people with different perspectives but with core interests in common, generating joint agreement for practical actions to influence and change their own situation. The research circles were led by research assistants, and involved participants with different backgrounds. Aim and theory of change used: Adopted model of social innovation: INNOVAGE adopts the Young Foundation model of social innovation (4) that underpins much of the work in this area. The model tracks the possible stages of innovation from prompts to systemic change. Adopted concept of active and healthy ageing: Building on the World Health Organisation framework (5), INNOVAGE has adopted a multi-layered approach that conceptualises active ageing as a comprehensive strategy to maximise participation and well-being as people age at individual, organisational and societal level. Targeted population and stakeholders: INNOVAGE allots significant space for discussion with and input from older people, carers, NGOs, academics/researchers, policy makers and business from the EU throughout the whole project. Timeline: INNOVAGE runs for 36 months and finishes in December 2015. Highlights: Innovation: An integral part of innovation is to: engage users in the development of innovations from the start; to continually reflect users' feedback, and; to encourage and support them. Research outcomes, evaluation and folow-up should be shared with users as well. Impact: Co-production with older people and relevant stakeholders ensures user-friendly care initiatives and environments which are more likely to be accepted and implemented. Users can help address a wide range of supplementary issues, such as acceptability, affordability, ethical issues, and implementation. Involving users in the design of integrated care services helps identify service provision's priorities, as well as challenge existing assumptions on users' needs and preferences. Outcomes: User involvement from the start of the innovation process empowers users and increases their wellbeing through better innovation. The multi-stakeholder approach adopted by INNOVAGE also influences other sectors which support active and healthy ageing and minimising care requirements. Conclusions: Key findings: User involvement requires sufficient resources in funding, staffing and compliance with ethical requirements. Effectively done, it contributes to users' quality of life, following a multi/inter -disciplinary approach. The heterogeneity of users must be reflected, especially their varying cognitive/physical abilities and education/literacy. Careful targeting of innovation in care is also needed to avoid increasing health inequalities among disadvantaged groups. It has particular value to discussions about care needs, which take place at the conjunction of health/social provision and individual/familial/medical requirement. Discussions: Sustainability issues: To ensure the sustainability of co-production methodologies to innovate care systems, it is important to provide user organisations - such as patient groups, older person's representatives - with the necessary support. Transferability issues: There is not a unique model to engage users. The area of interest, the required outcomes, the available resources and other issues impact the methodology to be adopted. The research circles described here offer one possible model. For effective implementation diversity must be reflected in the research. Lessons learned: Meaningful user engagement requires planning and adequate resources and commitment from both health and social care organisations. Preparation should include identifying legal, ethical and practical risks, defining roles and responsibilities for all parties, deciding on methodologies as well as timing and budgets. Early user involvement is the best option; if left until late in the process it is perceived as tokenistic. ABSTRACT FROM AUTHOR]; Copyright of International Journal of Integrated Care (IJIC) is the property of Ubiquity Press and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)




Sinigaglia, A., & Neary, D. (2016). Putting users at the heart of care: engaging the “cared-for” in integrated innovation. International Journal of Integrated Care, 15(5). https://doi.org/10.5334/ijic.2158

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