How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK.

Background: The advent of new chronic conditions such as long COVID-19 raises the question of whether and, if so, how best to establish new disease registries for such conditions. Prompted by the potential need for a long COVID-19 registry, we examined experiences of existing UK disease registries to understand barriers and enablers to establishing and sustaining a register, and how these have changed over time.

Methods: We undertook semi-structured interviews between November 2022 and April 2023 with individuals representing six disease registries that collect individual-level longitudinal data on people diagnosed with a chronic condition.

Governing Integrated Health and Social Care: An Analysis of Experiences in Three European Countries.

Purpose: Achieving greater health and social care integration is a policy priority in many countries, but challenges remain. We focused on governance and accountability for integrated care and explored arrangements that shape more integrated delivery models or systems in Italy, the Netherlands and Scotland. We also examined how the COVID-19 pandemic affected existing governance arrangements.