MAITE FERRANDO, PhD (AAATE) BARCELONA, 5 th OCTOBER 2018

1. 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, 5th OCTOBER 2018

2. Transferability of digital platforms enhancing integrated care_ProAct Eu Project • This research aims to provide an explanatory modelof the factors (positive and negative) and the mechanismsthat 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 clearguidelines (policy makers, developers, end users, etc.) to optimise the transferability potential of a digital platform supporting care, in general and integrated care, in particular.

3. Main insights from the State of ArtModels & Theories: “what works where and why across multiple contexts”- The role of Ethical, legal and regulatory frameworks

4. 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.

5. Analysis based on the perception of professionals involved in Integrated Care (social and health care)

6. 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 regulatoryframeworks are overallconsidered as keyfactorsforintegratedcarefromusercentricperspective (positive ornegative) • “Thereis a lackof regional lawstocoordinate social and healthcollaboration” • “Legislation and regulationstronglyaffect social and healthcolaboration, thereforeinfluencingusercentriccare” • “Ethicalbarriers, such as data confidentiality, limitcollaborativework. There are importantdilemmasconfrontingethics and privacy versus data sharingamongprofessionals, alwaysprioritazingtheprotectionof data. Thisresults in anexcessiveprotectionismswhichmakesunavailablekeyinformationwhichwouldenhancedecisionmakingprocesses”.

7. 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 (..)”

8. 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” • “Thelackof a internationalcodificationof social issuesislimitingthe transfer ofknowledge and collaborationfor social service” • “Thestratificationofvulnerability in integratedcareismainlybasedonhealht data, sincethereis no standardised data on social characteristicsofthepatients/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.”

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10. Keep updated & participate!Transferability of digital solutions for Integrated Care contact: mferrando@kveloce.com Web: www.proact2020.eu @proact2020 facebook.com/proact