Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives.

ABSTRACT:

Introduction

Data linkage for health research purposes enables the answering of countless new research questions, is said to be cost effective and less intrusive than other means of data collection. Nevertheless, health researchers are currently dealing with a complicated, fragmented, and inconsistent regulatory landscape with regard to the processing of data, and progress in health research is hindered.

Aim

We designed a qualitative study to assess what different stakeholders perceive as ethical and legal obstacles to data linkage for health research purposes, and how these obstacles could be overcome.

Methods

Two focus groups and eighteen semi-structured in-depth interviews were held to collect opinions and insights of various stakeholders. An inductive thematic ana

SUBMITTER: Smit JR 

PROVIDER: S-EPMC10898216 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature