Jos M. van den Broek

Citizen science on a smartphone: Participants’ motivations and learning

Citizen science provides researchers means to gather or analyse large datasets. At the same time, citizen science projects offer an opportunity for non-scientists to be part of and learn from the scientific process. In the Dutch iSPEX project, a large number of citizens turned their smartphones into actual measurement devices to measure aerosols. This study examined participants’ motivation and perceived learning impacts of this unique project. Most respondents joined iSPEX because they wanted to contribute to the scientific goals of the project or because they were interested in the project topics (health and environmental impact of aerosols). In terms of learning impact, respondents reported a gain in knowledge about citizen science and the topics of the project. However, many respondents had an incomplete understanding of the science behind the project, possibly caused by the complexity of the measurements.

Medical decision-making in children and adolescents: developmental and neuroscientific aspects

BackgroundVarious international laws and guidelines stress the importance of respecting the developing autonomy of children and involving minors in decision-making regarding treatment and research participation. However, no universal agreement exists as to at what age minors should be deemed decision-making competent. Minors of the same age may show different levels of maturity. In addition, patients deemed rational conversation-partners as a child can suddenly become noncompliant as an adolescent. Age, context and development all play a role in decision-making competence. In this article we adopt a perspective on competence that specifically focuses on the impact of brain development on the child’s decision-making process.Main bodyWe believe that the discussion on decision-making competence of minors can greatly benefit from a multidisciplinary approach. We adopted such an approach in order to contribute to the understanding on how to deal with children in decision-making situations. Evidence emerging from neuroscience research concerning the developing brain structures in minors is combined with insights from various other fields, such as psychology, decision-making science and ethics. Four capacities have been described that are required for (medical) decision-making: (1) communicating a choice; (2) understanding; (3) reasoning; and (4) appreciation. Each capacity is related to a number of specific skills and abilities that need to be sufficiently developed to support the capacity. Based on this approach it can be concluded that at the age of 12 children can have the capacity to be decision-making competent. However, this age coincides with the onset of adolescence. Early development of the brain’s reward system combined with late development of the control system diminishes decision-making competence in adolescents in specific contexts. We conclude that even adolescents possessing capacities required for decision-making, may need support of facilitating environmental factors.ConclusionThis paper intends to offer insight in neuroscientific mechanisms underlying the medical decision-making capacities in minors and to stimulate practices for optimal involvement of minors. Developing minors become increasingly capable of decision-making, but the neurobiological development in adolescence affects competence in specific contexts. Adequate support should be offered in order to create a context in which minors can make competently make decisions.

Readability and Visuals in Medical Research Information Forms for Children and Adolescents

Children are often-overlooked receivers of medical information, and little research addresses their information needs. However, young children are capable of understanding medical concepts, and they express the desire to be informed. This study addresses the quality of medical research information forms for children in the Netherlands, by assessing text readability and the role of visuals. Children’s reading books, nonfiction books, and textbooks were used as comparison. Seven focus groups were conducted to identify children’s preferences and needs for text and supporting visuals. We argue that the use of visuals is a powerful, but neglected, tool to improve medical information for minors.

Research information for minors: Suitable formats and readability. A systematic review

As children age, their capacity to consent or dissent to research participation increases. Numerous regulations and guidelines require that children should receive information ‘according to their capacity of understanding’. In order to gain more insight in the quality of patient information forms for minors, a systematic literature search was performed. Two aspects of quality will be analysed in this paper: the effect of format on understanding and the readability of text in the documents. A systematic search was executed in PubMed, Embase and PsycINFO. Seventeen papers on format were included. Interventions testing information formats indicate that improvement is possible, but outcome measurement varied per study and no apparently successful intervention was repeated. Only three readability papers were found, all indicating a readability gap between patient information forms and childrens actual reading level. The results indicate an urgent need for further research on how to adequately inform minors about clinical trials.

Motivation and learning impact of Dutch flu-trackers

Many citizen science projects deal with high attrition rates. The Dutch Great Influenza Survey is an exception to this rule. In the current study, we conducted an online questionnaire (N=1610) to investigate the motivation and learning impact of this loyal, active participant base. Results show that the desire to contribute to a larger (scientific) goal is the most important motivator for all types of participants and that availability of scientific information and data are important for learning. We suggest similar projects seek (social) media attention regularly, linking project findings to current events and including the importance of participants’ contribution. Abstract

Perspectives of adolescents on decision making about participation in a biobank study: a pilot study

Objectives To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool. Methods The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing. Results All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material. Conclusions Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents’ perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices. Implications Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.

From research to evidence-informed decision making: a systematic approach

Abstract Background Knowledge creation forms an integral part of the knowledge-to-action framework aimed at bridging the gap between research and evidence-informed decision making. Although principles of science communication, data visualisation and user-centred design largely impact the effectiveness of communication, their role in knowledge creation is still limited. Hence, this article aims to provide researchers a systematic approach on how knowledge creation can be put into practice. Methods A systematic two-phased approach towards knowledge creation was formulated and executed. First, during a preparation phase the purpose and audience of the knowledge were defined. Subsequently, a developmental phase facilitated how the content is ‘said’ (language) and communicated (channel). This developmental phase proceeded via two pathways: a translational cycle and design cycle, during which core translational and design components were incorporated. The entire approach was demonstrated by a case study. Results The case study demonstrated how the phases in this systematic approach can be operationalised. It furthermore illustrated how created knowledge can be delivered. Conclusion The proposed approach offers researchers a systematic, practical and easy-to-implement tool to facilitate effective knowledge creation towards decision-makers in healthcare. Through the integration of core components of knowledge creation evidence-informed decision making will ultimately be optimized.

The extent and effects of patient involvement in pictogram design for written drug information: a short systematic review

This short review provides insight into the extent and effectiveness of patient involvement in the design and evaluation of pictograms to support patient drug information. Pubmed, CINAHL, Cochrane Library, Embase, PsycINFO, Academic Search Premier and Web of Science were searched systematically; the 73 included articles were evaluated with the MMAT. We see that, usually, non-patient end-users are involved in the design of pharmaceutical pictograms - patients are more commonly involved in the final evaluation of pictogram success. Repeated involvement of (non-)patients aids the design of effective pharmaceutical pictograms, although there is limited evidence for such effects on patient perception of drug information or health behaviour.