Ethical legal and regulatory frameworks and its impact

Ethical, legal and regulatory frameworks and its impact in transferability of digital solutions Analysis based on the perception of professionals involved in Integrated Care (social and health care) MAITE FERRANDO, PHD (AAATE) BARCELONA, 5 th OCTOBER 2018 Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

Transferability of digital platforms enhancing integrated care_Pro. Act Eu Project This research aims to provide an explanatory model of the factors (positive and negative) and the mechanisms that contribute to the transferability of digital platforms enhancing integrated care, from one European region/country to other. The knowledge provided by the model will allow to elaborate clear guidelines (policy makers, developers, end users, etc. ) to optimise the transferability potential of a digital platform supporting care, in general and integrated care, in particular. Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

Main insights from the State of Art Models & Theories: “what works where and why across multiple contexts”- The role of Ethical, legal and regulatory frameworks Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

INTEGRATE project framework The framework aims to provide a conceptual basis for reflecting on the design and implementation of integrated health and social care programs/projects Organisational integration: regulation, and coordination among health and social organizations Systemic Integration: context and policy background (governance and financing alignment) Functional integration: the capacity to communicate data and information across partners of an integrated delivery system (information standards) Normative integration: shared vision, norms and values. Personcentered care Normative integration Functional integration Clinical integration INTEGRATE PROJECT FRAMEWORK Systemic Integration Professional integration Organisational integration Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

Analysis based on the perception of professionals involved in Integrated Care (social and health care) Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

INTERVIEW INSIGHTS- Perceptions of professionals involved in Integrated Care (social and health care) Pool of experts on the field (N=18), representing different Eu countries (Austria, Belgium, Check Republic, Estonia, Finland, The Netherland, Portugal, Spain, Sweden, Uk) have been engaged in analysing different elements the Model definition by using semi-structured interviews. Some findings so far: Legal, ethical and regulatory frameworks are overall considered as key factors for integrated care from user centric perspective (positive or negative) “There is a lack of regional laws to coordinate social and health collaboration” “Legislation and regulation strongly affect social and health colaboration, therefore influencing user centric care” “Ethical barriers, such as data confidentiality, limit collaborative work. There are important dilemmas confronting ethics and privacy versus data sharing among professionals, always prioritazing the protection of data. This results in an excessive protectionisms which makes unavailable key information which would enhance decision making processes”. Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

INTERVIEW INSIGHTS- Perceptions of professionals involved in Integrated Care (social and health care) Legal and regulatory frameworks are frequently seen as top-down approaches preventing of user centric care “[Regulatory] Top-down approaches make difficult [to] understand the needs. “The biggest barriers are the social and health care systems being structurally separated, with funding at the top [of this separation] ” “co-creation [of regulatory and legal frameworks in the health and social care sector integration ] should involve key stakeholders including the end-users Service providers perceive regulations as a limitation for transferring practices and innovation to integrated care: “As I said everything is very rigid (. . . ) there is no room to experiment (. . . ) even if it comes from a successful (European) project […]. Service providers are tided by their partnerships with the regional authorities and they don't have autonomy and authority; The government is pushing to make it typical, which means (. . . ) the same funding, the same measures, the same services. “[The transferability] is not happening (. . )” Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

INTERVIEW INSIGHTS- Perceptions of professionals involved in Integrated Care (social and health care) Norms and standards are perceived as needed for practical and coordination purposes, while care should never loose the human perspective “There is a lack of standardised practices in social care which prevents from transferability of digital solutions in the field” “The lack of a international codification of social issues is limiting the transfer of knowledge and collaboration for social service” “The stratification of vulnerability in integrated care is mainly based on healht data, since there is no standardised data on social characteristics of the patients/users”. “Social care has standards, but there is no agreement on the use of them, limiting collaboration and transferability” “Standards are a more mechanistic approach to things. Social services goes for a more "human touch" [perspective]” “Digital solutions are always seen with a sort of hesitation because of a fear or humanisation of the support they provide. ” Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996

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Keep updated & participate! Transferability of digital solutions for Integrated Care contact: mferrando@kveloce. com Web: www. proact 2020. eu @proact 2020 facebook. com/proact Pro. ACT has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 689996