ABSTRACT
Background Many countries are experimenting with novel ways of organising and delivering more integrated health and social care. Governance is relatively neglected as a focus of attention in this context but addressing governance challenges is key for successful collaboration. Methods Cross-country case analysis involving document review and semi-structured interviews with 27 local, regional and national level stakeholders in Italy, the Netherlands and Scotland. We used the Transparency, Accountability, Participation, Integrity and Capability (TAPIC) framework to structure our analytical enquiry to explore factors that influence the governance arrangements in each system. Results Governance arrangements ranged from informal agreements in the Netherlands to mandated integration in Scotland. Novel service models were generally participative involving a wide range of stakeholders, including the public, although integration was seen to be driven, largely, from a health perspective. In Italy and Scotland some reversion to ‘command & control’ was reported in response to the imperatives of the Covid-19 pandemic. Policies, budgets, auditing and reporting systems that are clearly aligned at all levels were seen to help with implementing innovations in service organisation. Where alignment was lacking, cooperation and integration was suboptimal, regardless of whether governance arrangements were statutory or not. There was wide recognition of the importance of buy-in. Enablers of greater engagement included visible leadership, time and long-standing working relationships. Lack of suitable indicators and openness to data sharing to measure integration hindered working relationships and thus the successful delivery of integrated services. Conclusions Our study provides important insights into how to more effectively and efficiently govern service delivery structures within care systems. We will discuss approaches to governance that help support more resilient integrated care systems. Key messages • Different governance arrangements face common challenges to greater integration of care. Enablers include strong leadership, inclusivity and openness to work across traditional boundaries. • Meeting the governance challenges of integrated health and social care requires clear lines of accountability, aligned policies, budgets and reporting systems.
ABSTRACT
Inroduction: Persons with MS (PwMS) need regular access to healthcare and social inclusion services to maintain their wellbeing and quality of life. The Covid-19 pandemic caused discontinuities to a broad range of services, because much of the health system's efforts were diverted towards the response to Covid patients, and because social distancing reduced the capacity of care providers overall. Some providers implemented various forms of telemedicine and remote monitoring to minimize discontinuities. Aim: To investigate on the reported impact of the pandemic on availability of services, on the perceived health status and psychological wellbeing of PwMS. Methods: 1,797 PwMS living in Italy participated to an online survey carried out by the Italian MS Society (AISM) between March 18, 2020 and April 8, 2021. Participants were recruited through AISM's website and social network pages, and via email to PwMS who had provided their address and agreed to be invited to regular surveys. Results: The sample is consistent with the known characteristics of the Italian population with MS, based on age, gender and area of residence (albeit with a slight underrepresentation of those living in the southern and insular regions). 64% of PwMS needed health care during the year of the pandemic, but 42% of them could not receive all the care they needed, 27% needed psychological support and 50% could not receive all of it. 32% needed rehabilitation, and 65% of them could not receive all of it. 26% needed personal care and support, and 68% of them could not receive all of it. 22% felt that their MS got worse because of the pandemic, especially those with self-reported EDSS >=6 (37%). 62% reported feeling isolated, 51% felt anxious, 40% felt depressed and 28% felt abandoned because of the pandemic. 45% reported that they could receive some form of remote monitoring, while 10% could receive some remote therapy. Conclusions: Despite the availability of some remote services, the pandemic had a negative impact on the accessibility of a broad range of services needed by PwMS in Italy. Many Italian PwMS attribute to the pandemic the negative evolution of their MS and their current psychological discomfort.