scholarly journals Residual newborn screening samples for research: Parental information needs for decision-making

2013 ◽  
Vol 18 (2) ◽  
pp. 115-122 ◽  
Author(s):  
Erin Rothwell ◽  
Lauren Clark ◽  
Rebecca Anderson ◽  
Jeffrey R. Botkin
Keyword(s):  
Decision Making ◽  
Newborn Screening ◽  
Information Needs ◽  
Parental Information

scholarly journals Informing Parents about Newborn Screening: A European Comparison Study

2021 ◽  
Vol 7 (1) ◽  
pp. 13
Author(s):  
Amber IJzebrink ◽  
Tessa van Dijk ◽  
Věra Franková ◽  
J. Gerard Loeber ◽  
Viktor Kožich ◽  
...  
Keyword(s):  
Newborn Screening ◽  
Information Needs ◽  
Scientific Literature ◽  
Comparison Study ◽  
Alternative Communication ◽  
European Comparison ◽  
Information Products ◽  
The Impact ◽  
Communication Methods ◽  
Parental Information

Knowledge about newborn screening (NBS) is an important factor for parents to make an informed decision about participation. In Europe, countries inform parents differently about their NBS program, potentially including different knowledge aspects in their information. The aim of this study was to assess twenty-six European parental information products and to analyze their knowledge aspects through a content analysis. The analyzed aspects were compared to a list of eight knowledge aspects from scientific literature. The list includes aspects important for parents’ decision-making, such as the purpose of screening. The study showed that most of the eight knowledge aspects are included in NBS information products of the majority of countries. However, there were differences between countries, for example in the amount of detail and phrasing of the information. Additional relevant knowledge aspects have also been identified and are recommended to optimize information products, such as the handling of residual bloodspot samples. This study only assessed knowledge aspects in information products meant for printing, but many countries also use other communication methods, and the impact on knowledge of the delivery of the information needs further study. Preferences of parents on alternative communication methods need to be considered and evaluated on their effectiveness.

Parents' Decision-Making in Newborn Screening: Opinions, Choices, and Information Needs

PEDIATRICS ◽  
2010 ◽  
Vol 126 (4) ◽  
pp. 696-704 ◽  
Author(s):  
E. A. Lipstein ◽  
E. Nabi ◽  
J. M. Perrin ◽  
D. Luff ◽  
M. F. Browning ◽  
...  
Keyword(s):  
Decision Making ◽  
Newborn Screening ◽  
Information Needs

scholarly journals Chemical Exposure: European Citizens’ Perspectives, Trust, and Concerns on Human Biomonitoring Initiatives, Information Needs, and Scientific Results

2021 ◽  
Vol 18 (4) ◽  
pp. 1532
Author(s):  
Maria Uhl ◽  
Ricardo R. Santos ◽  
Joana Costa ◽  
Osvaldo Santos ◽  
Ana Virgolino ◽  
...  
Keyword(s):  
Decision Making ◽  
Policy Development ◽  
Information Needs ◽  
Policy Decision ◽  
Human Biomonitoring ◽  
Chemical Exposure ◽  
The European Union ◽  
Cross Sectional ◽  
The United Kingdom ◽  
Scientific Results

Over the last few decades, citizen awareness and perception of chemical products has been a topic of interest, particularly concerning national and international policy decision makers, expert/scientific platforms, and the European Union itself. To date, few qualitative studies on human biomonitoring have analysed communication materials, made recommendations in terms of biomonitoring surveillance, or asked for feedback in terms of specific biomonitoring methods. This paper provides in-depth insight on citizens’ perceptions of knowledge of biomonitoring, impact of chemical exposure on daily life, and claims on how results of research should be used. Four semi-structured focus groups were held in Austria, Portugal, Ireland, and the United Kingdom (UK). The cross-sectional observational qualitative design of this study allows for better understanding of public concern regarding chemicals, application, and use of human biomonitoring. The main findings of this study include citizens’ clear articulation on pathways of exposure, the demand on stakeholders for transparent decision-making, and sensitivity in communication of results to the public. Validated and trustful communication is perceived as key to empowering citizens to take action. The results can be used to facilitate decision-making and policy development, and feeds into the awareness needs of similar and future projects in human biomonitoring. Furthermore, it also brings to light ideas and concepts of citizens’ in shaping collaborative knowledge between citizens’, experts, scientists, and policy makers on equal terms.

PP58 The Alliance Between Health Technology Assessment And Public Health In National Screening Policies

2019 ◽  
Vol 35 (S1) ◽  
pp. 48-48
Author(s):  
Leonor Varela-Lema ◽  
Janet Puñal-Riobóo ◽  
Paula Cantero-Muñoz ◽  
Maria José Faraldo-Vallés
Keyword(s):  
Public Health ◽  
Decision Making ◽  
Newborn Screening ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
National Health System ◽  
Health Technology ◽  
Screening Tests ◽  
Special Focus ◽  
Screening Programs

IntroductionDecision making regarding national population-based prenatal and newborn screening policies is recognized to be highly challenging. This paper aims to describe the formalized collaboration that has been established between the Spanish National Public Health Screening Advisory Committee (PHSAC) and the Spanish Network of Health Technology Assessment (HTA) agencies to support the development of evidence- and consensus-based recommendations to support this process.MethodsIn-depth description and analysis of the strategic and methodological processes that have been implemented within the Spanish National Health System prenatal and newborn screening frameworks, with special emphasis on the role, actions, and responsibilities of HTA agencies.ResultsThe role of HTA agencies is threefold: (i) support the PHSAC by providing evidence on safety, effectiveness and cost/effectiveness of the screening tests/strategies, as well as contextualized information regarding costs, organizational, social, legal and ethical issues; (ii) collaborate with the PHSAC in the development of formal evidence- and consensus-based recommendations for defining population screening programs, when required; (iii) analyze real-world data that is generated by piloted programs. This paper will provide real-life examples of how these processes were implemented in practice, with a special focus on the development of the non-invasive prenatal testing (NIPT) policy. Recommendations for NIPT were developed by a multidisciplinary group based on the European network for Health Technology Assessment (EUnetHTA) rapid assessment report and the predictive models that were built using national statistics and other contextualized data.ConclusionsThe current work represents an innovative approach for prenatal and newborn screening policymaking, which are commonly difficult to evaluate due to the low quality of evidence and the confounding public health issues. The paper raises awareness regarding the importance of joint collaborations in areas where evidence is commonly insufficient for decision making.

scholarly journals Information needs and decision-making preferences of older women offered a choice between surgery and primary endocrine therapy for early breast cancer

2017 ◽  
Vol 26 (12) ◽  
pp. 2094-2100 ◽  
Author(s):  
Maria Burton ◽  
Karen Kilner ◽  
Lynda Wyld ◽  
Kate Joanna Lifford ◽  
Frances Gordon ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Older Women ◽  
Endocrine Therapy ◽  
Early Breast Cancer ◽  
Information Needs ◽  
Primary Endocrine Therapy

scholarly journals A consumer perspective of advertising by attorneys

1991 ◽  
Vol 17 (1) ◽  
Author(s):  
C. Boshoff
Keyword(s):  
South Africa ◽  
Decision Making ◽  
Information Needs ◽  
Communication Strategies ◽  
Legal Services ◽  
Marketing Communication ◽  
Advertising Agencies ◽  
The Public ◽  
Consumer Perspective ◽  
First Time

Attorneys in South Africa may soon be permitted to advertise their services for the first time. This recommendation put forward by the Association of Law Societies, though still to be ratified by the four provincial law societies, has come amid increasing competition between attorneys and non- professionals. The marketing fraternity is, however, uncertain as to how members of the public are likely to react to legal services advertising. This study attempts to provide some tentative guidelines for decision-making on advertising by attorneys. Interested parties like attorneys, marketing consultants, and advertising agencies could use the researched information to structure marketing communication strategies which will not transgress the ethical code of the attorneys' profession, but which will satisfy the information needs of consumers. The study reports the findings of a survey conducted among 1 000 members of the public. Indications are that consumers not only think that advertising should be permitted, but also that it will benefit both themselves and the legal profession. Opsomming Prokureurs mag moontlik binnekort toegelaat word om hul dienste te adverteer. Die aanbeveling van die Vereniging van Prokureursordes, wat nog deur die vier provinsiale wetsgenootskappe bekragtig moet word, is geneem as gevolg van toenemende mededinging tussen prokureurs en nie-professionele praktisyns. Bemarkingsdeskundiges is egter onseker oor wat die publiek se reaksie sal wees. Die studie poog om enkele tentatiewe riglyne voor te stel vir bemarkingskommunikasiestrategieë wat nie die regsprofessie se etiese kode sal oortree nie, maar tog voldoende inligting aan verbruikers sal beskikbaar stel. Die bevindinge van 'n opname onder 1 000 lede van die publiek dui daarop dat reklame nie alleen verwelkom sal word nie, maar dat dit moontlik tot voordeel van sowel die publiek as die regsprofessie sal strek.

Central Information Flows and Decision-Making Requirements

2013 ◽  
pp. 7-32
Author(s):  
Robin J.A. Sharp ◽  
Julie A. Ewald ◽  
Robert Kenward
Keyword(s):  
Decision Making ◽  
Land Use ◽  
European Union ◽  
Land Use Planning ◽  
Agricultural Policy ◽  
Information Needs ◽  
State Level ◽  
Lessons Learned ◽  
Information Flows ◽  
Project Partner

Information needs of government for SEA, EIA, and other aspects of biodiversity conservation and sustainable development are studied and reported in this chapter. This includes needs related to biodiversity for land use planning, for operation of the EU Common Agricultural Policy, for agricultural policy more generally, and for Biodiversity Action Plans. Legislation and its implementation are considered at European Union and member state level by direct enquiries and a preliminary questionnaire survey in project partner countries. Preliminary conclusions are drawn and lessons learned for a Pan-European survey.

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