IntroductionWorldwide, people experience the effects of infectious disease outbreaks on a regular basis. These effects vary from direct impact of the virus on health, to indirect impact of control measures on day-to-day life. Yet, incorporating the experiences, views and ideas of patients and the public in decision-making in managing outbreaks does not take place on a structural basis. However, this might be beneficial. We examined the current incorporation of patient and public engagement (PPE) in decision-making regarding outbreak management (OM).MethodsA systematic search was executed in PubMed, Embase, APA PsycInfo, Web of Science, Scopus and other literature sources. Papers describing PPE in decision-making regarding OM on a collective level (group-level) were included. Relevant information about study characteristics, methods, impact and embedment of PPE in decision-making in OM was collected.ResultsThe search yielded 4186 papers of which 13 were included. The papers varied in study context and design. Remarkably, no substantial patient engagement was identified. Overall, public engagement (PE) in decision-making regarding OM was mostly executed by a mix of methods, for example, workshops, interviews and surveys. Knowledge and idea sharing between the public and experts was deemed beneficial for establishing well-informed discussions. The efforts resulted in either direct implications for practice or recommendations in policy papers. Most papers described their efforts as a first step. No structural embedment of collective PE in decision-making regarding OM was identified. Furthermore, the quality of most papers was low to moderate due to insufficient description.ConclusionOverall, various practices for PE can be potentially valuable, but structural embedment in OM decision-making on a collective level was low. Before PPE can be permanently embedded in OM, more evidence on its impact needs to be collected. Furthermore, reporting on the engagement process and used terminology needs to be harmonised to ensure reproducibility and transparency.

Background Effective and safe vaccines are available outside national immunization programs (NIP). Increased awareness and vaccine uptake can improve public health. Before the inclusion of maternal pertussis vaccination (MPV) in the Dutch NIP in December 2019, extra communication efforts were undertaken. Here we examine the success of these efforts, investigating women’s awareness of and their decision-making process regarding MPV. Methods Between December 2018 and January 2019, one year before the introduction of MPV in the NIP, and about three years after MPV was recommended by the Dutch Health Council, pregnant and non-pregnant women (i.e. child younger than two years) were invited to fill out an online questionnaire. Participant’s decision-making processes regarding MPV were assessed with an adapted Precaution Adoption Process Model (PAPM), including stages of awareness, engagement, information-seeking, and vaccination behaviour. Furthermore, factors related to the decision-making process were examined. Results In total, 942 women were included, of whom 62% were non-pregnant. Most of the pregnant and nonpregnant women were aware of MPV during pregnancy (respectively 69 and 56%). Most aware women had heard about MPV through their midwife and the Public Health Institute (PHI) website. Women unaware of MPV reported a need for information, preferably from their midwives. Most aware women felt MPV was important to them (88%) and were classified as “engaged”. Of the eligible and “engaged” pregnant women, 58% were vaccinated, versus 38% of “engaged” non-pregnant women. Conclusions As the most preferred and trusted source of information, midwives are essential to increasing awareness of MPV. The PHI website is considered to be a reliable information source and is often consulted. To increase awareness, appropriate healthcare workers should be encouraged to actively inform target groups about available, additional vaccinations.

Introduction During an epidemic, like COVID-19, trade-offs have to be made between measures to reduce mortality and morbidity and associated social, economic and political consequences. Traditionally, epidemic management (EM) has been guided by experts and policymakers, and is executed most attentively. It can however still be controversial in the public sphere. The question arises if public engagement (PE) could be a means to improve the quality and effectiveness of EM, as it has proven to be for other domains of healthcare policy. Methods From June to October 2020, seven Deliberative Discussion Focus Groups were executed with 35 Dutch citizens between 19 and 84 years old, to discuss their views on PE in COVID-19 management. Timeline Interviews were conducted to elucidate meaningful experiences during the epidemic. Next, benefits, barriers, timing and possible forms of PE in EM were discussed. Results Almost all participants supported PE in EM, as the integration of experiences and ideas of the public would benefit the quality of EM, and PE would increase awareness and acceptance of measures. Also, participants emphasized the importance of receiving information on the process of EM, to overcome the perceived lack of transparency herein. Consultation was seen as a fitting form for PE since the public could share ideas and feedback on EM, particularly on communication campaigns and control measures, however final authority stayed with experts. PE could be executed after the first acute phase of the epidemic, but also during evaluations. Moreover, barriers for PE were identified such as time constraints and the lack of knowledge of the public. Conclusions A foundation of values and conditions for PE in EM from the perspective of the public was laid. Support for PE was identified and considered valuable for quality and effectiveness of EM. Next, the results should be confirmed within a broader audience and the views of experts and policymakers on PE in EM should be elucidated. Key messages According to participants, public engagement can increase quality and effectiveness of outbreak management, by sharing knowledge, experiences and ideas between the public, experts and policymakers. The focus groups in this study were executed whilst the COVID-19 pandemic unfolded, which yielded very relevant outcomes of current interest.