25 documents found, page 1 of 3
A community-centric model for conference co-creation: the world conference on C...
Francisco, R; Pascoal, C; Granjo, P; de Freitas, C; Videira, PA; Dos Reis Ferreira, V"Background: Patient and public co-creation and involvement in health initiatives have been witnessing great expansion in recent years. From healthcare to research settings, collaborative approaches are becoming increasingly prevalent and diverse, especially in the field of rare diseases which faces complex challenges. Conference development and implementation, however, have been primarily guided by passive, in...
Nationwide consensus on quality indicators to assess glaucoma care: A modified ...
Iorio-Aranha, F; de Freitas, C; Rocha-Sousa, A; Azevedo, A; Barbosa-Breda, JPurpose Performance assessments are essential to tracking and improving quality in health care systems. Key aspects of the care process that act as indicators must be measured in order to gain an in-depth understanding of a care unit's operation. Without standardized quality indicators (QIs), it is difficult to characterize and compare the abilities of institutions to achieve excellence. The aim of this study i...
Performing publics of science in the COVID-19 pandemic: A qualitative study in ...
Machado, H; de Freitas, C; Fiske, A; Radhuber, I; Silva, S; Grimaldo-Rodríguez, CO; Botrugno, C; Kinner, R; Marelli, LResearch about science and publics in the COVID-19 pandemic often focuses on public trust and on identifying and correcting public attitudes. Drawing on qualitative interviews with 209 residents in six countries-Austria, Bolivia, Germany, Italy, Mexico, and Portugal-this article uses the concept of performativity to explore how participants understand, and relate to science, in the COVID-19 context. By performa...
Concerns and coping mechanisms during the first national COVID-19 lockdown: an ...
Silva, S; Machado, H; de Freitas, C; Lucas, RObjectives: The aim of this study was to explore concerns and coping mechanisms during the first national COVID-19 lockdown in Portugal. The general population provided statements via an open comment box as part of an online prospective study. Study design: This was an Internet-based open cohort study. Methods: Individuals aged ≥16 years were eligible to participate in this study. Inductive content analysis was...
Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of...
Amorim, M; Silva, S; Machado, H; Teles, EL; Baptista, MJ; Maia, T; Nwebonyi, N; de Freitas, CAssessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associ...
The Influence of Human-Milk Substitutes Marketing on Breastfeeding Intention an...
Lisi, C; Barros, H; Faisal-Cury, A; Matijasevich, A; de Freitas, CBackground: The International Code of Marketing of Breast-Milk Substitutes is a global public health policy aiming to protect breastfeeding from the influence of human-milk substitutes marketing. Brazil is one of the few countries substantially implementing it. Most countries adopted selected provisions, including Portugal. Research Aim: To explore whether Brazilians’ perspectives about breastfeeding intention ...
Public Views About Involvement in Decision-Making on Health Data Sharing, Acces...
Nwebonyi, N; Silva, S; de Freitas, CBackground: Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Involving the public in health data governance can help to address ...
Gamete and embryo donation for research: what might shape the willingness to do...
Pinto da Silva, S; de Freitas, C; Severo, M; Silva, SPURPOSE: Research using gametes and embryos donated by reproductive and third-party donors contributed to substantial, albeit contentious achievements. The views of gamete donors and recipients on donation for research and the underpinning role of attitudes towards research have been seldom explored and are yet to be incorporated into ethical, legal, and regulatory landscapes. From a cultural standpoint, this s...
Return of genomic results does not motivate intent to participate in research f...
Milne, R; Morley, KI; Almarri, MA; Atutornu, J; Baranova, EE; Bevan, P; Cerezo, M; Cong, Y; Costa, A; Feijao, C; de Freitas, C; Fernow, J; Goodhand, PPurpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded w...
Public and patient involvement in health data governance (DATAGov): protocol of...
de Freitas, C; Amorim, M; Machado, H; Leão Teles, E; Baptista, MJ; Renedo, A; Provoost, V; Silva, SIntroduction 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...