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.

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.

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

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.

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

Background: Various 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.

Pharmaceutical pictograms for low-literate patients: Understanding, risk of false confidence, and evidence-based design strategies.

Objective: This study aims to (1) evaluate ten pharmaceutical pictograms for low-literate patients on understandability, (2) assess the risk of false confidence in understanding, and (3) identify how the design can be improved to increase understandability.

Methods: Interviews were conducted with n=197 pharmacy visitors in the Netherlands. Additional qualitative discussions were held with n=30 adequately and n=25 low-literate participants (assessed with REALM-D).

Low literacy and written drug information: information-seeking, leaflet evaluation and preferences, and roles for images.

Background Low-literate patients are at risk to misinterpret written drug information. For the (co-) design of targeted patient information, it is key to involve this group in determining their communication barriers and information needs. Objective To gain insight into how people with low literacy use and evaluate written drug information, and to identify ways in which they feel the patient leaflet can be improved, and in particular how images could be used.

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.

Comic strips help children understand medical research: targeting the informed consent procedure to children's needs.

Objective: Children involved in medical research often fail to comprehend essential research aspects. In order to improve information provision, a participatory approach was used to develop new information material explaining essential concepts of medical research.

Methods: A draft of a comic strip was developed by a science communicator in collaboration with pediatricians.

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.