Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research.

ABSTRACT:

Introduction

International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research.

Methods and analysis

This multidisciplinary project draw

SUBMITTER: de Freitas C 

PROVIDER: S-EPMC7959217 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature