Corrective Actions Taxonomy for Healthcare Incidents (CATHI): Insights From Real-world Data on Hospital-reported Incidents.

Objectives: This study aimed to develop a taxonomy for classifying corrective actions following health care incidents in a Portuguese tertiary hospital.

Methods: The study utilized a multimethods design, combining qualitative and quantitative analyses of real-world data. Thematic analysis was performed, drawing on inductive and deductive approaches.

A community-centric model for conference co-creation: the world conference on CDG for patients, families and professionals.

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, information-sharing models.

Performing publics of science in the COVID-19 pandemic: A qualitative study in Austria, Bolivia, Germany, Italy, Mexico, and Portugal.

Research 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 performativity, we mean the ways by which participants understand themselves as particular sorts of publics through identification with, and differentiation from, various other actors in matters that are perceived as controversies surrounding science: COVID-19 vaccination, media communication of science, and the interactions between governments and scientists.

Nationwide consensus on quality indicators to assess glaucoma care: A modified Delphi approach.

Purpose: 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.

A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases.

At least 50% of chronic disease patients don't follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases.

Gamete and embryo donation for research: what might shape the willingness to donate among gamete donors and recipients?

Purpose: 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 study adapts and explores psychometric properties of the Portuguese version of the Research Attitudes Questionnaire (RAQ), and analyzes the willingness of gamete donors and recipients to donate gametes and embryos for research and its association with sociodemographic, reproductive characteristics, and attitudes towards research.

Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals.

Assessing 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 associated factors. The three participant groups expressed significantly different views.

The Influence of Human-Milk Substitutes Marketing on Breastfeeding Intention and Practice among Native and Immigrant Brazilians.

Background: 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.

A Community-Led Approach as a Guide to Overcome Challenges for Therapy Research in Congenital Disorders of Glycosylation.

Congenital Disorders of Glycosylation (CDG) are a large family of rare genetic diseases for which effective therapies are almost nonexistent. To better understand the reasons behind this, to analyze ongoing therapy research and development (R&D) for CDG, and to provide future guidance, a community-led mixed methods approach was organized during the 4th World Conference on CDG for Families and Professionals. In the quantitative phase, electronic surveys pointed to the prioritization of six therapeutic R&D tools, namely biobanks, registries, biomarkers, disease models, natural history studies, and clinical trials.

Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.

Background: 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.

Concerns and coping mechanisms during the first national COVID-19 lockdown: an online prospective study in Portugal.

Objectives: 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.

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.

Purpose: 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 when asked whether return of results (RoR) would motivate their decision to donate DNA or health data.

Donor-centred care: the facilitating and constraining factors experienced by gamete donors in a public bank.

The provision of care that is responsive to the preferences, needs and values of gamete donors is key to improving their recruitment and ensuring the functioning of gamete banks. This qualitative study aimed to explore gamete donors' experiences about the facilitating and constraining human and system factors to donor-centred healthcare delivery in gamete banks. It is based on 20 semi-structured interviews with oocyte and sperm donors, recruited at the Portuguese Public Bank of Gametes, conducted from November 2017 to February 2019.

Medical ethics when moving towards non-anonymous gamete donation: the views of donors and recipients.

Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2017 and April 2018, 69 donors and 147 recipients, recruited at the Portuguese Public Bank of Gametes, participated in this cross-sectional study. Position towards anonymity was assessed through an open-ended question in a self-report questionnaire, which was subject to content analysis.

Migrants' involvement in health policy, service development and research in the WHO European Region: A narrative review of policy and practice.

Objectives: The involvement of individuals and communities in health decision-making is enshrined in WHO policies. However, migrant groups are under-represented in health decision-making processes. Our aim was to explore migrants' involvement in health policy, service development and research in the WHO European Region to identify levers for inclusive and meaningful practice.

The Impact of Formula Industry Marketing on Breastfeeding Rates in Native and Migrant Mothers.

Lifelong benefits of breastfeeding are far-reaching. However, optimal breastfeeding practices may be negatively affected by the marketing of different forms of breast milk substitutes. In addition, whether market factors have a different impact on migrants' breastfeeding practices when compared to natives has been poorly investigated.

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.

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.

Maternal Country of Birth and Exclusive Breastfeeding During the First In-Hospital Day in Portugal: The Influence of the Baby-Friendly Hospital Initiative.

Background: Early breastfeeding practices are important determinants of later breastfeeding behaviors and can be influenced by multiple factors. Despite the reported positive influence on breastfeeding initiation, its influence on the association between maternal country of birth and first day in-hospital breastfeeding has not been examined.

Research Aims: To determine (1) if association between maternal country of birth and first day in-hospital exclusive breastfeeding exists in Portugal and (2) if any association is affected by giving birth in a Baby-Friendly Hospital.

Involvement in maternal care by migrants and ethnic minorities: a narrative review.

Background: Guidelines for improving the quality of maternal health services emphasise women's involvement in care. However, evidence about migrant and ethnic minorities' preferences for participation in maternal care remains unsystematised. Understanding these populations' experiences with and preferred forms of involvement in care provision is crucial for imbuing policies and guidelines with sensitivity to diversity and for implementing people-centred care.

[Gamete donation: (un)answered social and ethical issues in Portugal].

Awareness of the discussion surrounding the social and ethical challenges regarding gamete donation is crucial for good governance of assisted reproduction techniques. In this article, we analyze the topics that guided the debate in the Portuguese ethics organizations, discussing their connections with themes addressed internationally. To that end, in March 2018, we systematically searched the websites of the National Council of Medically Assisted Procreation and of the National Ethics Council for Life Sciences.

Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

Background: Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking.