The making of a cohort participant: challenges and achievements in a long-term journey
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Interview with Henrique Barros, MD, PhD, ISPUP, Project Leader
1. Digital tools for data collection
Ana Cristina Santos, MPH, PhD
A remarkable decline of participation in epidemiological studies, like cohort studies, has been documented over the past few decades. Several strategies to improve participation and data collection have been employed, including the development of digital tools for data collection, such as mobile apps or web surveys.
The availability of new technology offers new possibilities for research, leading to the development of “e-epidemiology”. These new resources open the door to large-scale epidemiological studies, facilitating participants’ recruitment, cost-efficient data collection and dissemination of results.
In this presentation two digital tools for data collection in epidemiological studies are outlined, the RECAP_MyLife mobile app and the e-cohort HAPP-e. Both tools were designed with the aim to improve data collection, follow-up, and participant involvement in cohorts of very preterm/very low birth weight individuals. In this presentation we will present issues related to the design, the development process, but also the major challenges in the implementation of such tools.
- Identification of two digital tools for data collection in epidemiological studies
- Development process of a mobile application for data collection
- Design and implementation of an e-cohort study
- Major challenges in establishing an e-cohort study
2. Record Linkage for epidemiological research
Julia Nadine Doetsch, Msc
In the context of COVID-19, record linkage could potentially serve as a prominent tool for epidemiological research and as a facilitator for local policymaking. Record linkage falls under the overall scope of data processing where data protection and privacy rights of data subjects are a prominent asset as established in the European General Data Protection Regulation (GDPR). We analyse the challenges and opportunities for a researcher to lawfully link routinely collected health and education data with cohort data of children as a tool for epidemiological research in Portugal, and discuss the implications of record linkage for epidemiological research across the European Economic Area.
- Outline the relation between Social Determinants of Health and the importance of record linkage in the context of COVID-19
- Identify the importance of the interplay between International, European Union and national Portuguese law for record linkage.
- Understand the impact of the General Data Protection Regulation (GDPR) on data protection and privacy rights in Portugal
- Discuss challenges and opportunities of record linkage
- Critically interpret GDPR‘s implications for epidemiological research
3. Testing Digital Health Intervention
Raquel Teixeira, MPH
In this talk, we provide an overview of digital health interventions and their development lifecycle. A special emphasis is given to the multifaceted content of the evaluation process and its methodological approaches. As a practical example of the evaluation process, we report a study to evaluate an M-health intervention. This pragmatic multicentre randomized controlled was designed to assess the ability of a mobile application to improve participation at follow-ups of very preterm/very low birth weight cohorts. The RCT includes three population-based cohorts across three European countries, with an estimated sample size of 230 participants.
- To define Digital Health Interventions and their applicability
- To interpret the Development lifecycle
- To characterize the Designing/developing steps and their implication in the evaluation stage
- To examine the evaluation criteria and their interdependency
- To compare methodological approaches to evaluate digital health interventions
- To critically analyse a practical example