Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands : a case study on tick-borne encephalitis and lyme borreliosis.
Date: 2018-08-28
Institutions: European Centre for Disease Prevention and Control
Subjects: Netherlands, case study, disease vector, epidemiology, health control, infectious disease, public health, research report

TECHNICAL REPORT

 Synergies in community and 
institutional public health 
emergency preparedness for tick-
borne diseases in the Netherlands

A case study on tick-borne encephalitis 
and lyme borreliosis

www.ecdc.europa.eu

ECDC TECHNICAL REPORT 

Synergies in community and institutional 
public health emergency preparedness for 
tick-borne diseases in the Netherlands 

A case study on tick-borne encephalitis and lyme borreliosis 

 
 
This report was commissioned by the European Centre for Disease Prevention and Control (ECDC), coordinated by 
Judit Takács and produced by PREPARE (Public Health Emergency Preparedness Activities for Europe, Umeå 
University, Sweden. 

Authors 
Daniel de Vries, Lianne Cremers, John Kinsman 

Acknowledgements 
We would like to thank the ECDC national focal point for preparedness and response in the Netherlands, and also 
the ECDC colleagues who contributed to this work. We are very grateful for their help and support.  

Netherlands: Fedor Gassner, Corien Swaan, Dorothee Rosskamp, Aura Timen. 

ECDC: Massimo Ciotti, Ines Reulet, Judit Takács, Svetla Tsolova, Henriette de Valk (Medical epidemiologist from 
the French National Public Health Agency, representing the ECDC-coordinated EU Network for Emerging and 
Vector-borne diseases), Emma Wiltshire and Hervé Zeller. 

Suggested citation: European Centre for Disease Prevention and Control. Synergies in community and institutional 
public health emergency preparedness for tick-borne diseases in the Netherlands. A case study on tick-borne 
encephalitis and lyme borreliosis. Stockholm: ECDC; 2018. 

Stockholm, August 2018 

ISBN 978-92-9498-259-9 
doi: 10.2900/80366 
Catalogue number TQ-09-18-011-EN-N 

© European Centre for Disease Prevention and Control, 2018 

Reproduction is authorised, provided the source is acknowledged 

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TECHNICAL REPORT 

Tick-borne encephalitis and lyme borreliosis in the Netherlands – country visit report 

Contents 

Abbreviations ................................................................................................................................................ 1 
Executive summary ........................................................................................................................................ 1 
Background .............................................................................................................................................. 1 
Aim ......................................................................................................................................................... 1 
Methods ................................................................................................................................................... 1 
Findings ................................................................................................................................................... 1 
Good practices ......................................................................................................................................... 2 
Background and context ................................................................................................................................. 4 
1.1 Tick-borne Encephalitis (TBE) ............................................................................................................... 4 
1.2 Lyme borreliosis .................................................................................................................................. 5 
1.3 Dutch health care and outbreak response system ................................................................................... 6 
Zoonotic risk-analysis and response structure .............................................................................................. 7 
1.5 Definitions .......................................................................................................................................... 8 
2. Aims and objectives ................................................................................................................................... 9 
3. Methods .................................................................................................................................................. 10 
3.1 Study design and participants ............................................................................................................. 10 
3.2 Data Collection .................................................................................................................................. 10 
4. Findings .................................................................................................................................................. 13 
4.1 The total LB/TBE community .............................................................................................................. 13 
4.2 Tick-borne encephalitis in the three preparedness cycle phases ............................................................. 15 
4.3 Vulnerable and hard-to-reach populations ........................................................................................... 22 
4.4 Additional LB related community-engagement findings ......................................................................... 22 
5. Good practices ......................................................................................................................................... 26 
Promoting collaborations and synergies between the authorities and the community .................................... 26 
Communication....................................................................................................................................... 26 
Promoting inter-sectoral collaborations and synergies between the authorities ............................................. 27 
Other important lessons learned that do not directly relate to synergies....................................................... 27 
References .................................................................................................................................................. 28 
Annexes ...................................................................................................................................................... 30 

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Tick-borne encephalitis and lyme borreliosis in the Netherlands – country visit report 

Abbreviations 

In this report, names of many Dutch institutes and organisations are translated into English. The following is a list 
of abbreviations used in the body of the text, including English translations. Appendix 8 shows a complete list of all 
translated English and Dutch names of the organisations identified in the stakeholder mapping exercise.  

Abbreviation 
ECDC 

GGD 
GLWG 
KNJ 
LB 
NVLP 
RIVM 

RIVM-LCI 

RIVM-Z&O 
SBB 
STIGAS 
TBE 
TBEV 
VBNE 
VWS 
ZonMw 

English translation 
European Centre for Disease Prevention and 
Control 
Municipal health service 
National Green Lyme Working Group  
Dutch Hunting Association 
Lyme borreliosis 
Dutch Association of Lyme Patients 
Dutch National Institute for Public Health and the 
Environment 
National Coordination Communicable Disease 
Control 
Centre Zoonoses and Environmental Microbiology 
Forestry Service 
Agrarian Personnel Health Service 
Tick-borne encephalitis 
Tick-borne encephalitis virus 
Association of Forest and Nature Reserve Owners  
Ministry of Health, Wellbeing, Sport 
Dutch Organisation for Health Research and 
Innovation in Care 

Dutch name 
Europees Centrum voor ziektepreventie en -bestrijding 

Gemeentelijke Gezondheidsdienst 
Landelijke Groene Lyme Werkgroep  
Koninklijke Nederlandse Jagersvereniging 
Ziekte van Lyme 
Nederlandse Vereniging van Lyme Patienten 
Rijksinstituut voor Volksgezondheid en Milieu 

Landelijke Coordinatiecentrum Infectieziektebestrijding 

Centrum Zoönosen en Omgevingsmicrobiologie 
Staatsbosbeheer 
Stichting Gezondheidszorg Agrarische Sectoren (STIGAS) 
Tekenencefalitis 
Tekenencefalitisvirus 
Vereniging van Bos- en Natuurterreineigenaren 
Ministerie van Volksgezondheid, Welzijn en Sport 
Nederlandse organisatie voor gezondheidsonderzoek en 
zorginnovatie 

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Tick-borne encephalitis and lyme borreliosis in the Netherlands – country visit report 

Executive summary 

Background 

Within the context of EU Decision 1082/2013/EU on serious cross-border threats to health, the European Centre for 
Disease Prevention and Control (ECDC) has initiated a case study project to investigate the synergies between 
communities affected by serious public health threats and the institutions (both health- and non-health-related) 
mandated to prepare for and respond to them. The premise of the project is that affected communities are 
increasingly recognised as key resources that can be used during public health emergencies, and that the concerns, 
understanding and experiences of the public should be harnessed as an important part of the response. 

Aim 

The aim of this case study project is to identify enablers and barriers for community and institutional synergies 
related to preparedness and control of tick-borne diseases. The report focuses on an emerging tick-borne 
encephalitis (TBE) infection in the Netherlands— where the two first endemic cases occurred in July 2016 — in the 
context of the widespread and increasing incidence of lyme borreliosis. Specifically, the study aims to: 

• 

• 

• 

identify good practices and patterns of cooperation between affected communities and the official 
institutions mandated to address tick-borne diseases such as TBE and lyme borreliosis;  
identify inter-sectoral collaboration between health and non-health-related sectors with regard to tick-borne 
diseases, such as TBE; 
identify model community engagement action for other EU countries.  

Methods 

A case study research design included the following methodologies: 

• 
• 
• 
• 
• 

Official documents and media reports; 
Interviews with a range of experts working at national and community level (n=26); 
Two focus group discussions with community representatives (n=9); 
Participant observation at the Dutch National Green Lyme Working Groups; 
Stakeholder mapping.  

Fieldwork was conducted during a visit to the Netherlands between 17 November and 5 December 2017. The data 
were subjected to thematic analysis in Atlas.ti qualitative software and UCINET social network software. The 
analytical framework of the preparedness cycle (pre-incident, incident and post-incident phases) was used to 
organise the findings. Other topical issues that emerged during analysis were then reviewed.  

Findings 

TBE during the three preparedness phases 

Pre-incident 
In the first months of 2017, surveillance collaboration with community-based actors, particularly hunters and 
herders, facilitated detection of TBE virus in deer and ticks in the Sallantse Heuvelrug National Park. RIVM-LCI 
subsequently organised a consultation meeting with experts from zoonotic organisations to discuss implications. In 
order to establish whether transmission to humans was occurring, it was decided to raise awareness among 
physicians about cases of TBE. Engagement with ‘green’ (agrarian, estate management, nature conservation, etc.) 
stakeholders regarding tick-borne diseases continued to focus on LB prevention. 

Incident 
After physicians were informed, two TBE cases were identified in July 2017. The first known TBE patient had 
already been part of a LB-oriented citizen science initiative known as ‘Tick-radar’. This motivated him to keep and 
share the tick that had bitten him, which facilitated isolation of the virus. The RIVM-LCI then scaled up to a 
response team that included zoonotic experts to decide on further measures and investigations, including media 
communication. In addition, a stakeholder analysis was performed by RIVM-LCI to create an overview of all 
relevant stakeholders.  

During the interviews for this study, there were discussions concerning the pros and cons of inviting other, non-
medical stakeholders at the early stage of risk assessment. Although the added value of their participation was 
recognised, there was also concern that it could dilute the main aim: to objectively assess the medical risk of the 
threat. However, non-medical stakeholders were included in response implementation and communication. Early 

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TECHNICAL REPORT 

involvement during the implementation phase is valuable, because it ensures understanding of how and why 
decisions are made, and strengthens understanding of subsequent actions taken. 

The decision was made to align TBE response with lyme borreliosis prevention, because TBE preventive measures 
are very much in line with educational materials developed for lyme borreliosis. This alignment further engaged the 
Dutch National Green Lyme Working Group (GLWG), a network of green occupational health stakeholders who 
monitor lyme borreliosis impact and collaboratively host an annual lyme borreliosis prevention week. As case 
numbers were limited, additional measures such as TBE vaccination were not considered. The issue received hardly 
any media or public attention in either of the regions, or the affected municipalities. 

Post-incident 
One new case was identified during the period between August 2016 and the fieldwork activity (in November 2017). 
There were no comprehensive post-event evaluations because the event was not seen as closed. RIVM has 
responded to the event in three ways: (1) increasing alertness among medical partners for detection and 
communication, (2) reviewing public awareness information on tick bites to include more TBE-related information 
and (3) initiating a number of studies to further examine the extent of TBE emergence.  

Vulnerable and hard-to-reach populations 
Vulnerable and hard-to-reach populations include hikers, foreign tourists, asylum seekers, pet owners, scout groups, 
school children, day-care children, garden owners and various volunteers often supporting public institutions. Many 
of these communities are reachable through the existing lyme borreliosis social networks, particularly by 
stakeholders who connect with multiple groups (‘brokers’). Volunteers who work in green areas often have limited 
occupational health services and require extra attention.  

Community-authority synergies 

The Dutch lyme borreliosis social network is large, with many active occupational health-oriented green 
stakeholders, including patient organisations. Synergies exist between these stakeholders and authorities which 
facilitate success in public prevention programmes. Close relationships between zoonosis researchers, hunters and 
foresters involved in this green network led to the detection of TBE virus in deer populations during early 2016. A 
small section of this network received information about emerging TBE in humans. Furthermore, the detection of 
the first TBE patient was facilitated through synergy with the citizen science initiative ‘Tick-radar’. Despite these 
synergies, there was little formal guidance on community engagement. Collaboration with patient organisations has 
required long-term investment in trust building, seen as typical within the Dutch consensus-building culture. The 
development of synergies with private sector organisations or companies was generally approached with caution. 

Communication 

RIVM immediately communicated the occurrence of TBE in humans to the medical community, as well as to high-
risk groups, key stakeholders in the affected areas, the media, and the Green Lyme Working Group. However, a 
few stakeholders managing green areas, who had been notified directly of the TBE virus in deer and ticks by RIVM, 
did not find out about the human TBE incidence through the same channel. Instead, they learned about it through 
the media. This somewhat compromised their ability to prepare their network for public engagement on the issue. 
Nevertheless, the timing of the event meant that there was little media and public interest even though the 
municipal health services were concerned about the unpredictability of media attention. Some respondents pointed 
out that RIVM has a unique role to play in responding to the public need for evidence-based health information and 
they felt that the agency should claim this public position.  

Inter-sectoral coordination 

After health decisions were taken, TBE coordination and response included community-based inter-sectoral 
stakeholders (e.g. the Forest Service). Some respondents argued in favour of earlier inclusion of inter-sectoral 
partners, because they could judge the appropriateness of health actions, facilitate timely communication in other 
networks, increase understanding of the emergency health response and avoid counterproductive measures across 
sectors. Coordination between the Ministry of Health, Wellbeing and Sport and the Ministry of Economic Affairs is 
hindered by the differential framing of green/rural space as either ‘a risk’ or a ‘healthy’ phenomenon (the ‘Green 
Cloud’). Overall, the ‘One Health’ approach is seen by many as promising for inter-sectoral coordination because it 
provides insight into the linkages between processes across governance sectors.  

Good practices 

As a result of this study, a number of good practices have been identified for promoting collaboration and synergies 
between the potentially affected communities and institutional preparedness authorities. They include points that 
have already been implemented to a greater or lesser extent, as well as areas where improvements could still be 
made. Each of these points, as given below, was suggested by one or more informants of the study.  

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Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Promote collaboration and synergies between the authorities and the 
community 

• 

• 

• 
• 
• 

• 

Use brokers to disseminate preparedness information and engage the whole community network as a 
resource for early detection, coordination and research.  
Cultivate relationships between zoonosis researchers and community-based monitoring networks, such as 
hunters and foresters, and promote citizen science in order to increase sensitivity of surveillance. 
Engage other networks of closely-related diseases but clarify differences in risk. 
Integrate community engagement advice in preparedness planning, including disease outbreak guidelines.  
Invest in trust building with community partners who are mistrustful by focusing on win-win solutions and 
sincerity and being patient.  
Use commercial initiatives as opportunities for public engagement while ensuring that communications are 
accurate, both to the public and among the parties involved. 

Communication 

• 
• 

• 
• 

• 

Continue to support and invest in the maintenance of cross-sectoral, community-based platforms.  
Continue to engage stakeholders who were involved in early detection during all subsequent phases of the 
response. 
Monitor human resource capacity with respect to local media outreach. 
Support transparency and communication of ongoing processes (e.g. research or decision-making) even if 
final conclusions or decisions have not or cannot be made. 
Invest in communications capacity in central and regional health authorities to provide an evidence-based 
voice in public discourse, in close collaboration with community-based partners. 

Promote inter-sectoral collaborations and synergies between the 
authorities  

• 
• 

• 

• 

Conduct a preliminary, comprehensive stakeholder analysis of relevant inter-sectoral partners. 
Provide a careful and timely explanation of the public health decision-making process to all stakeholders 
involved in the implementation phase. 
Continuously invest in ministerial coordination and consultation by building collaborative capacity, creating 
win-win scenarios and employing positive experience from previous responses.  
Develop inter-sectoral workflow charts and support ‘One Health’ platform development.  

Other important lessons learned that do not directly relate to 
synergies 

• 
• 

Need for particular effort to reach vulnerable populations.  
Conduct post-incident evaluations.  

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Background and context 

EU Decision 1082/2013/EU (October 2013) on serious cross-border health threats provides a legal basis for 
collaboration and information exchange between EU Member States, and between European and international 
institutions on preparedness planning, prevention, and mitigation in the event of a public health emergency. The 
Decision pays specific attention to arrangements for ensuring interoperability between the health sector and other 
sectors identified as critical in the event of a public health emergency [1].  

As part of the process of increasing inter-sectoral preparedness for serious cross-border public health threats, the 
European Centre for Disease Prevention and Control (ECDC) has initiated a case study project to investigate the 
synergies between communities affected by serious public health threats and the institutions (both health- and 
non-health-related) mandated to prepare for and respond to them. The premise for the project is that affected 
communities are increasingly recognised as key resources that can be utilised during public health emergencies 
(this was one of the major lessons learned from the West African Ebola outbreak of 2014–16), and that the 
concerns and experiences of ordinary people should be harnessed as an important part of the response [31]. 
Similarly, it is important to understand how and the extent to which institutions in the health and relevant non-
health sectors can collaborate in such community-oriented work. 

Two EU countries, Spain and the Netherlands, were selected for inclusion in the case study project1, in agreement 
with ECDC and the authorities in the countries concerned. Emerging tick-borne diseases in humans have been 
reported in both countries in recent years, possibly due to environmental changes. These diseases were the focus 
of the work, which has sought to document the perspectives and experiences of key actors in the health sector; 
the relevant non-health sectors and the affected communities.  

Work in Spain was focused around two cases of infection with Crimean-Congo Haemorrhagic Fever (CCHF) virus 
that emerged in the Autonomous Community of Castilla y León in August 2016, and is the subject of a separate 
report. The present report is concerned with the emerging infection of tick-borne encephalitis in the Netherlands —
the two first endemic cases occurring in July 2016 — in the larger context of a widespread and increasing incidence 
of lyme borreliosis.  

1.1 Tick-borne encephalitis 

Tick-borne encephalitis, or TBE, is a human viral infectious disease involving the central nervous system. In 
approximately two-thirds of patients infected with the European TBE virus symptoms are non-specific (European 
Centre for Disease Prevention and Control, 2018), while in 20–30% of patients the second phase of disease involves 
the central nervous system with symptoms of meningitis, encephalitis or meningoencephalitis. The proportion of 
patients developing encephalitis increases with age and is highest among the elderly [2]. A third of encephalitis 
patients experience substantial impairment in quality of life, but mortality is rare (1–2%). There is no specific drug 
therapy for TBE; however, effective vaccination is available in TBE endemic areas [3]. TBE is caused by the tick-borne 
encephalitis virus. Three virus sub-types described are European (Western), Siberian and Far-eastern tick-borne 
encephalitis virus. Ticks, specifically hard ticks of the family Ixodidae, act as both vector and reservoir for TBE virus. 
The main hosts are small rodents, with humans being accidental hosts. Large animals serve as feeding hosts for the 
ticks, but do not play a role in maintenance of the virus. European TBE has a patchy spatial distribution of endemic 
regions across Europe, where climatic and ecological conditions are suitable for circulation of the virus. Global 
warming may cause dramatic range expansion of Ixodes ticks [4], along with changes in leisure habits, landscape 
management practices and socio-economic influences [5,6]. 

In 2005, there was no real evidence for a TBE virus reservoir in ticks or wildlife in the Netherlands [7]. Despite 
incidence in almost all countries across central and eastern Europe since 1980, in 2006 Dutch experts did not 
anticipate TBE virus movement towards the Netherlands [8]. TBE was only found among people who had travelled 
outside the country [9]. Using samples collected in 2011, a 2016 study identified TBE virus antibodies in deer as well 
as TBE-infected ticks in the Dutch Sallandse Heuvelrug National Park, located in the eastern region [10]. Shortly 
afterwards, in 2016, the first autochthonous case was diagnosed in another national park, the Utrechtse Heuvelrug, in 
the centre of the country [11]. A person in his 60s with no recent travel history suffered from neurological symptoms  
confirmed as TBE on 6 July 2016. During clinical observation, the patient gradually improved with no focal 
neurological deficits present at discharge (day 37), but fatigue and mild subjective cognitive complaints remained. A 
second autochthonous Dutch TBE case was discovered in the Sallandse Heuvelrug region on 14 July 2016 in a 44-
year-old male patient and confirmed on 21 July [12]. By day nine the patient had gradually improved, although 
tinnitus persisted. Shortly afterwards, a suspected third case was found from the same region. However, this patient 
had also been in Germany during the incubation period. 

1 Previous ECDC case studies on institutional preparedness focussed on Ebola [46], MERS [47] and polio [48]. 

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Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

1.2 Lyme borreliosis 

Lyme borreliosis is a bacterial disease transmitted to humans through the bite of infected ticks. While infection can be 
asymptomatic, early skin rash of localised infection, called erythema migrans, occurs in about 60–90% of cases, possibly 
accompanied by flu-like symptoms. If left untreated, the bacteria may disseminate; neuroborreliosis is the main 
complication, seen in about 10% of infected individuals [13]. All persons exposed to infected tick bites are at risk of 
becoming infected. No licensed vaccine is currently available, so the main methods for preventing infection are avoidance 
of tick bites and early removal of attached ticks. Patients with symptomatic infection can be treated with appropriate 
antibiotics. Early treatment can prevent the risk of developing late stage complications, but even patients with late stage 
lyme borreliosis can benefit from antibiotics. The pathogenic genospecies are found in Ixodes ricinus ticks and vertebrate 
hosts, including many species of small mammals and ground-feeding birds, which are the principal feeding hosts for larva 
and nymphs. Adult ticks usually feed on larger animals, such as deer and other larger ungulates. Lyme borreliosis is the 
most prevalent tick-transmitted infection in temperate areas of Europe, North America and Asia. While overall prevalence 
of lyme borreliosis may be stabilising, researchers expect its geographical distribution to continue to rise due to economic 
development, changes in land use and global warming [14].  

The Netherlands is among the countries with the highest reported incidence of lyme borreliosis worldwide [15], with an 
average incidence of approximately 134 cases per 100 000 inhabitants per year2. Borrelia-infected ticks are present in 
many forest and dune areas [16]. In the Netherlands there has been a strong increase in the number of medical 
consultations regarding tick bites and erythema migrans: from 73 000 consultations for tick bites in 2006 to 93 000 in 
2009 and an increase in erythema migrans patients from 17 000 in 2006 to 22 000 in 2009. A 2011 study has shown that 
12% of lyme borreliosis patients suffer from severe infections and 10% show persistent complaints which they attribute 
to lyme borreliosis [17]. Costs to Dutch healthcare have been estimated at EUR 19.3 million annually [18]. In the 
Netherlands, 43% of bites occur in forests and 31% in gardens [19]. The number of bites is particularly high among 
professionals working in the green sector, such as national parks and forestry (36%) or landscaping (15%) [20]. Other 
risk groups are those spending leisure time in outdoors in parks and forests and schoolchildren [21]. Figure 1 shows the 
distribution of reported erythema migrans in the Netherlands 1994–2014.  

Figure 1. Distribution of general practitioner consultations for erythema migrans per municipality in 
the Netherlands 1994–2014. Number of diagnoses per 100 000 inhabitants 

Source: Rijksinstituut voor Volksgezondheid en Milieu [22] 

If bitten, the tick should quickly be removed to prevent transmission. However, although 90% of the Dutch population 
has heard of lyme borreliosis, the majority of people are unaware of the consequences. Data from 2007 suggests that 
only 26% know what to do in the event of a tick bite [23]. In the last decade this figure has most probably increased as 
a result of efforts to educate the public. Dutch children do seem to know about ticks and lyme borreliosis, and most of 
them know that checking for ticks is important [24]. Yet only 20% are checked by their parents after having been in 
green areas. A study of elementary schools in Brabant showed that only half reported taking tick prevention precautions 
during nature camps [25]. In the green sector, about one-third of all organisations facilitated internal registration of tick 
bites among their employees, and about half of the employees notify their employers [20].  

Finally, because of the difficulty in diagnosing lyme borreliosis, there is ongoing debate in the Netherlands (as in other 
countries) between lyme patient associations and academic biomedical experts concerning the serological existence of 
a chronic version of lyme borreliosis. Patients perceive the biomedical conclusion of ‘unconfirmed’ chronic lyme 
borreliosis as a denial of their reality, which includes persistent complaints that have a major impact on their day-to-
day life. Nevertheless, a lack of laboratory confirmation and the idea that clinicians may perceive the complaints 
attributed by patients to chronic lyme borreliosis as psychosomatic have led many patients to turn to alternative 
healthcare, where commercial partners tend to operate on less evidence-based methods. Some have even resorted to 
healthcare in foreign countries where different regulations allow for long-term antibiotic treatment. 

2 An estimated 23.6% of ticks are infected in the Netherlands, compared to 10.1% European-wide 

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1.3 Dutch healthcare and outbreak response system 
Dutch primary care, with gatekeeping general practitioners at its core, provides a strong foundation of the 
healthcare system and prevents unnecessary use of more expensive secondary care, while promoting consistency 
and coordination of individual care. In the Netherlands, the rights of the patient are stipulated in several laws 
which also cover their relation to providers and insurers, access to information and possibilities for filing an official 
complaint in the event of maltreatment [26]. Communicable disease control in the Netherlands is managed via a 
multi-layer hierarchy, flowing from local to national and public to individual (private care), as shown in Figure 2.  

Figure 2. Communicable disease control in the Netherlands 

Source: RIVM 

In the event of a national public health emergency, the National Institute for Public Health and the Environment 
(RIVM)’s Centre for Infectious Disease Control (CIb) coordinates the response. Central to the response is one of its 
five sub-centres 3, the National Coordination Centre for Communicable Diseases Control (RIVM-LCI), which was also 
the ECDC focal point for this study. RIVM is an independent institute advising on health and environmental issues, 
with its work primarily commissioned by Dutch ministries and inspectorates. RIVM also undertakes projects within 
international frameworks. The institute coordinates the control of infectious diseases and is responsible for rapid 
and efficient communication on outbreaks both at national and regional level throughout the Netherlands. In the 
event of an outbreak, RIVM is responsible for providing scientific advice on outbreak control measures to the 
government and arranging for measures to be implemented by health professionals.  

According to the Dutch Public Health Act, infectious disease control is the responsibility of the 422 municipalities 
(gemeenten) (see Figure 3). Serving these municipalities are 25 Municipal Health Service regions (Gemeentelijke 
Gezondheidsdienst, or GGD), which are aligned with disaster/crisis medical safety regions responsible for disaster 
medicine and pandemic preparedness: the Medical Emergency Management Regio (Geneeskundige 
Hulpverleningsorganisatie in de Regio, or GHOR) (see Figure 3).  

Figure 3. Dutch municipalities [left] and municipal health service regions (GGD) [right] 

Source: RIVM 

3 The other specialist sub-centres are the Centre for Infectious Diseases Epidemiology and Surveillance, the Centre for Research Infectious Diseases 
Diagnostics and Screening, the Centre for Zoonoses and Environmental Biology and the Centre for Immunology of Infectious Diseases and Vaccines. 

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Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

1.4 Zoonotic risk analysis and response structure 

During the past decade, the Netherlands has been affected by severe zoonotic outbreaks among poultry (avian 
influenza in 2003), goats and humans (Q-fever 2007–2010), but also by other slowly emerging wildlife-borne 
zoonoses such as tularemia (rabbit fever) and lyme borreliosis4. In response to these events the Dutch Ministry of 
Health, Wellbeing and Sport and the Ministry of Economic Affairs developed a collaborative protocol, zoonotic risk-
analysis and response structure in 2011 [27,28]. Figure 4 shows the organisational structure5.  

Figure 4. Zoonosis structure, from detection to decision making  

CIb: RIVM-Centre Infection Control 
Directeur CIb: Director of CIb 
SO-Z: Signal Coordination Zoonosis 
RT-Z: Response Team Zoonosis  OMT-Z: Outbreak management team Zoonosis 
DB-Z: Expert Consultation Zoonosis 
BAO-Z: Governance Coordination Zoonosis 
Bewindspersoon: Policy-maker(s). 

Source: De Jong & Wiessenhaan [28] 

Regular medical or veterinary zoonotic signals are discussed at the Signal Coordination Zoonosis (SO-Z), which 
meets monthly (urgent alerts are sent straight to the Director of the RIVM Centre of Infection Control). The SO-Z 
evaluates the necessity for setting up a Zoonosis Response Team (RT-Z). In case of urgency, a RT-Z can be called 
upon any time by its chair (head of centre RIVM-LCI). The RT-Z evaluates the alert and advises the director on 
measures, including interventions, diagnostics, treatment and communication. If the situation is considered to be a 
serious threat, the Outbreak Management Team Zoonosis (OMT-Z) advises the ministries on risk, management 
options and communication. In addition, the Expert Consultation Zoonosis (DB-Z) provides scientific advice ahead 
of time for non-urgent, complex issues. Finally, the Governance Coordination Zoonosis (BAO-Z) assesses measures 
provided by the OMT-Z regarding governmental feasibility and desirability. In this process, the OMT-Z invites 
representatives from patient organisations and animal sectors to provide input.  

Within RIVM, the Centre for Infectious Diseases (CIb) uses four scaling-up phases in its emergency response, as 
shown in Figure 5. Phase 1 is detection and alerting (yellow), phase 2 is coordination (orange), phase 3 is response 
(red) and phase 4 is crisis (purple).  

4 For zoonotic examples, including more common food-borne infections, see: 
https://www.rivm.nl/Documenten_en_publicaties/Wetenschappelijk/Rapporten/2017/november/Staat_van_Zo_nosen_2016 
5 For a more detailed version (in Dutch), see: 
https://www.rivm.nl/Documenten_en_publicaties/Algemeen_Actueel/Uitgaven/Infectieziekten_Bulletin/Jaargang_27_2016/Septe
mber_2016/Tabellen_en_figuren_september_2016/Figuur_SOZ_artikel.org 

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TECHNICAL REPORT 

Figure 5. Graphical communication of four CIb scale-up phases of emergency response: 1 Alert 
(Signalering), 2 Coordination (Afstemming), 3 Response (Respons) and 4 Crisis

Source: RIVM 

1.5 Definitions 

A few key terms are used regularly during the course of this case study project.  

‘Community’ – refers to a population directly affected by, or at risk of the disease in question. In this report, we 
define a community as dynamic since it can change and adapt with variations in environmental, social and political 
factors. In this study, we distinguish between community and institutional authorities, the latter referring to 
governmental decision-making bodies, such as the Dutch Ministry of Health, Wellbeing and Sport (VWS), RIVM and 
the Municipal Health Service (GGD). In this study, there were several communities involved, some of them 
institutional networks, such as patient organisations, estate owners and managers, veterinary networks, 
occupational health organisations, and lyme borreliosis patient organisations. In addition to these complex 
networks, two geographical communities were central foci: the Province of Utrecht hosting the Utrechtse Heuvelrug 
National Park, which was also the location of the first TBE case, and two community representatives of the 
Sallandse Heuvelrug National Park, where the second TBE case was detected and where TBE virus was first 
detected in deer. 

‘Synergy’ refers in this report to the added-value that derives from the process and outcome of two or more 
stakeholders working together towards a common goal. The stakeholders could be either from the community 
and/or institutional. Any synergy that arises through their collaboration can be seen as something that is greater 
than the sum of its parts. In other words, the benefits gained through working together are greater than that 
which stakeholders can achieve alone, and these benefits are, most likely, also mutually shared.  

‘Public health emergency preparedness’ is defined as the ‘capability of the public health and healthcare systems, 
communities, and individuals, to prevent, protect against, quickly respond to, and recover from health emergencies, 
particularly those whose scale, timing, or unpredictability threatens to overwhelm routine capabilities. Preparedness 
involves a coordinated and continuous process of planning and implementation that relies on measuring 
performance and taking corrective action’ [29]. 

‘Community engagement’ describes the ‘direct or indirect process of involving communities in decision-making 
and/or in the planning, design, governance and delivery of services, using methods of consultation, collaboration 
and/or community control’ [30]. 

‘Green partners’ in this report mostly relates to nature-oriented stakeholders, such as owners of estates, landscape 
management organisations, hunters, forestry managers, etc. It could also include agricultural stakeholders such as 
farmers and livestock holders. 

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2. Aims and objectives 

This case study project was conducted as part of Lot 2 of an ECDC-funded Public Health Emergency Preparedness 
Framework Contract (Number ECDC/2014/005). The objective is to identify the elements that should be considered 
for interoperability and resilience in public health emergency planning, and to support the implementation of EU 
Decision 1082/2013/EU (October 2013) on serious cross-border health threats. 

The aim of this particular case study (Specific Contract No 5 ECD.7247) in both Spain and the Netherlands, was to 
collect evidence and identify good practices related to community preparedness for public health emergencies in 
the EU, with a focus on tick-borne diseases. Specifically, the study aims to: 

• 

• 

• 

Identify what has worked well and what may not have worked, with particular attention paid to practices 
and patterns of cooperation between affected communities and the official institutions mandated to address 
the threat of tick-borne diseases.  
Where relevant, to identify and analyse inter-sectoral collaboration with respect to community-institutional 
synergies, and to provide examples of collaborative efforts between health and non-health-related sectors. 
Identify actions that could be taken by other EU countries in the short and longer term.  

Case studies were selected through a collaborative process between senior experts at ECDC and country focal 
points.  

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3. Methods 
3.1 Study design and participants 

A case study approach was taken for this project, which was based on several sources of evidence: (a) documents 
(Annex 2 and 8); (b) 16 national and regional key informant interviews with 21 respondents, and two community-
level focus discussion groups with 10 respondents; (c) half a day of participant observation at a National Green 
Lyme Working Group meeting; and (d) stakeholder mappings, individually obtained during interviews and focus 
groups. Focus groups included mostly community representatives at risk of tick bites, such as hunters, herders, 
farmers, camp-site owners, and land/estate owners. Often interviews involved two respondents at the same time. 
The research team collected all data in the Netherlands between 17 November and 5 December 2017. Annex 1 lists 
all respondents.  

The interview and focus group discussion participant categories, which were discussed and agreed upon in close 
collaboration with ECDC and the Dutch counterparts (based at RIVM-LCI), were as follows: 

National level 

• 
• 
• 
• 

Ministry of Health  
RIVM Centre for Infectious Disease Control (CIb).  
State epidemiologists  
Entomologist or laboratories & diagnostics (RIVM) 

Regional level 

• 
• 
• 
• 

Municipal Health Services (GGD Utrecht/Twente) 
Agriculture (livestock) & veterinarians (Wageningen University) 
Regional landscape management  
Forestry Service (Utrechtse Heuvelrug & Sallandse Heuvelrug) 

Community level 

• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 

Health worker 
Lyme patient organisation representative 
Scout groups 
School representatives 
Private property owners  
Children’s farm 
Campground manager 
Municipality employee 
Community green maintenance worker 
Local forestry worker 
Gardener 
Hunter 
Herder. 

3.2 Data collection 

3.2.1 Research team 

The core research team consisted of a Dutch senior medical anthropologist affiliated to Umeå University’s PREPARE 
team who led the interviews, supported by a medical anthropologist, who took notes and asked follow-up 
questions. A Dutch biologist and Lyme expert deployed by RIVM-LCI attended all interviews and focus group 
discussions and participated fully by asking questions, and providing advice where appropriate (particularly to local 
community partners). The RIVM-LCI focal point did not participate in the interviews and discussions, as this was 
not feasible due to scheduling obligations. Two ECDC public health preparedness experts, a sociologist and a 
medical scientist (also the team leader) and a medical epidemiologist from the French National Public Health 
Agency, representing the ECDC-coordinated EU Network for Emerging and Vector-borne diseases, joined the core 
team for the first two days (27-28 November). The structure of the core team, including anthropologists and a 
local biologist, proved very effective in reaching out across sectors. In addition, the availability and openness of the 
Dutch leadership team at RIVM-LCI was a great help in contributing to this report. Finally, the support of the ECDC 
experts in-country over the first few days was very helpful for guiding the study.  

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3.2.2 Documents 

Prior to the country visit, RIVM directed us to their online resources, and press cuttings collected about TBE and 
lyme borreliosis were downloaded and analysed. These provided an invaluable overview of the course of events, as 
well as how people and the media responded. Additional documentary materials were collected from our 
interviewees during the country visit. In addition, background materials on TBE and LB were identified from online 
searches and summarized. These included peer-reviewed articles in the published scientific literature as well as 
formal reports and informal documents. A list of all documents identified for this study can be found in Appendix 2, 
and media documents in Annex 8.  

3.2.3 Interviews and focus group discussions 

After discussion and agreement between the study team and the Dutch counterparts (based at RIVM-LCI) on the 
general categories of respondents, a preliminary list of participants for interviews and focus groups was developed 
by the RIVM-LCI. A RIVM-LCI employee and Dutch biologist and Lyme expert further coordinated recruitment of all 
listed participants. After a formal invitation letter explaining the study and informed consent procedures, 
participants were contacted and if willing to participate scheduled. During the course of the study, a few additional 
stakeholders were added per request of the study team. Interviews were conducted at RIVM or at the offices of 
respondents. Community-level interviews and focus groups were held at community-based organisations, such as a 
care facility for the elderly and the office of a nature conservation organisation. Two interviews (with a patient and 
a scouting organisation) were held via Skype and two over the phone (Sallandse Heuvelrug forester and Municipal 
Health Service worker, Twente) for logistical reasons.  

An initial set of questions for the interviews and focus group discussions was derived from a literature review 
previously conducted for ECDC [31]. The questions were structured in a format similar to a theoretical 
preparedness cycle, based on pre-incident, incident, and post-incident phases [32], and then adapted according to 
comments received from ECDC and the Dutch counterparts. In this framework, the pre-incident phase involves 
preparation; the incident phase involves management, monitoring, investigation, and intervention and the post-
incident phase involves recovery and identification of lessons learned. The final version of the questionnaire is 
presented in Annex 3. In order to facilitate the interview and focus group discussion process, the questions were 
translated into Dutch and sent in advance to the participants. Questions were designed to be broadly relevant to all 
interviewee categories, but the focus of the questioning varied, depending on the position and particular expertise 
and experience of each individual interviewee or focus group discussion respondent.  

3.2.4 Participant observation 

Participants were observed at a half-day meeting of the national Green Lyme Working Group held at a landscape 
conservation office in Gravenland (Natuurmonumenten) on 30 November, which coincidentally took place during 
the study visit. During the meeting, stakeholders presented research on TBE and lyme borreliosis, and the group 
reviewed other ongoing research projects. In addition, a private-sector partner gave a presentation on protective 
measures and equipment for people working outdoors. The group also discussed coordination of an annual public 
relations campaign (Week van de Teek; ‘Tick awareness week’). Observing the meeting enabled us to obtain 
information about the manner in which partners discussed ideas and issues.  

3.2.5 Participatory stakeholder mapping 

With the exception of one focus group discussion and two respondent interviews, interview and focus group 
respondents were consistently asked to start the conversation by drawing a stakeholder map from their point of 
view. Each respondent was asked if they could map on a blank piece of paper the different stakeholder/interest 
groups or groups that have previously been involved in preparation for tick-borne diseases, or a hypothetical case 
with a higher incidence. We also asked which stakeholders were considered community-based or governmental. 
Respondents who had experience with the actual TBE event were also asked which stakeholder they thought was 
missing during the response. While this exercise was mainly a means of engaging with stakeholders and facilitating 
communication, it did provide an overview of how each stakeholder saw themselves in relation to other partners in 
the community. Analysis was conducted by the study team (see Section 3.3). 

3.2.6 Ethical considerations 

Written informed consent was obtained from all interviewees and focus group participants, who were assured that 
nothing they said would be ascribed to them within any reports and/or subsequent publications. They were also 
asked to agree to the listing of their name and title as respondent in the report. The consent form is included in 
Annex 4.  

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3.2.7 Data analysis 

During qualitative analysis, notes from the interviews and focus group discussions were subjected to thematic 
analysis, using Atlas.ti qualitative data software. A set of pre-defined codes was used as a starting point, based on 
the questions from the interviews, with additional codes included as they emerged. A list of the codes and their 
thematic classification is shown in Annex 5. Since the organisation of the questions in terms of the emergency 
preparedness cycle was challenging due to the limited emergency response situation of only two TBE cases, data 
analysis strategy shifted towards the underlying infrastructure of lyme borreliosis as an enabling context for a real 
or hypothetical upscale of TBE. In the end, the analysis focused on the synergies, barriers and enablers of 
community engagement, with some emphasis on the theoretical preparedness cycle mentioned above.  

Stakeholder maps were collected and their data compiled into UCINET software, with symmetry forced into the 
matrix. The resulting social network was complemented by an attribute file listing detailing whether each actor was 
a government authority or a community-based organisation, as well as their medical, educational, environmental, 
or animal health identities.  

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4. Findings 

4.1 The lyme borreliosis/TBE community 

During community engagement, what does the ‘community’ actually look like? Respondents were asked to visually 
map stakeholders they would turn to in the event of a major TBE event (see Methods). Most perceived that the 
general lyme borreliosis network was the same as that used for any work on TBE, and consequently did not make 
a distinction. Figure 6 shows the combined result of the stakeholder mapping exercise. The size of the nodes 
indicates the extent to which an actor is a broker 6 or the amount of influence an actor has on others based on their 
unique connectedness. Removal of brokers from the network will be the most disruptive for communication 
between other nodes.  

The results show an extensive network that indicates a key role during TBE events and/or lyme borreliosis 
prevention work for a set of brokers (represented by a larger-sized node) mainly in the health field. These are the 
Municipal Health Services, RIVM’s Centre for Coordination and Outbreak Control (RIVM-LCI), family doctors and the 
Dutch Association of Lyme Patients, one of two Dutch patient organisations. The major exception to this health-
oriented set of brokers is the national Green Lyme Working Group (GLWG). The GLWG is a network coordinated by 
the Agrarian Personnel Health Service (also known as STIGAS) and the Association of Forest and Nature Owners 
(VBNE), and includes collaboration with an extensive network of ‘green’ partners (e.g. estate owners, landscape 
management, wildlife experts, etc.). Moreover, GLWG brings together occupational health and medical providers 
interested in reducing tick-borne disease in their workforce and a lyme patient organisation.  

Next to the GLWG brokerage, we can see how other smaller brokers connect many community-based outliers. 
Furthermore, a number of other perhaps unexpected key brokers appear, such as the Royal Dutch Hunting 
Association or the VBNE. We conclude that while only a few actors were active during the 2016 TBE event, there is 
a community-based preparedness and response potential in this network that can be exploited in future TBE 
outbreak situations. The next section describes how respondents reported having made use of this network during 
the 2016 emergence of TBE disease. This social network is, of course, limited by the particular selection of 
respondents for the study as well as recall bias during the exercise. Nevertheless, it provides a relatively unique 
overview of social relationships which otherwise remain hidden in more static stakeholder analyses, such as the 
analysis developed by RIVM-LCI (Annex 6). 

6 Measured using UCINET’s ‘betweenness centrality’ statistics. 

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Figure 6. Entire lyme borreliosis/TBE social network based on stakeholder mapping  

The size of the nodes indicates brokerage (‘betweenness centrality’), or the amount of influence a node has on others based on 
its unique connectedness.  

Red denotes stakeholders using a health perspective.  
Blue denotes stakeholders using a non-health perspective.  
Diamond shapes denote government authority, circles are community-based.  
See Annex 9 for Dutch names. 

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4.2 Tick-borne encephalitis in the three preparedness cycle 
phases 

4.2.1 Pre-incident phase 

Community engagement in detection 
Although in 2005 researchers had found no evidence of a TBE virus reservoir in ticks or wildlife in the Netherlands 
[7], reports of TBE virus-neutralising antibodies in wildlife and cattle in Belgium prompted researchers to 
reinvestigate in 2010. During analysis of serum from 317 deer by the Dutch Wildlife Health Centre in 2015, six 
(2%) were found positive, five of which were from Sallandse Heuvelrug National Park (see Figure 7). In addition, 
TBE virus RNA was detected in two ticks from the same location [10].  

Figure 7. Spatial distribution of roe deer positive for TBE virus 

The researchers concluded that TBE virus had been endemic to the Netherlands for at least five years prior to 2005, 
and deemed the isolated location of these results to be ‘striking and unexplained’ 7. They argued that TBE virus 
may be prevalent at other locations in the Netherlands. In order to aid detection, zoonotic researchers involved 
with the study explained how they had been working together with both estate management and green actors, 
such as Natuurmonumenten, a national nature conservation organisation, and the Dutch forestry service 
(Staatsbosbeheer). They had also worked with animal groups such as herders, hunters and the Dutch Wildlife 
Health Centre to organise sampling. Collaboration between health specialists and green partners had developed as 
a result of  previous cooperation between Wageningen University & Research and RIVM as part of a research 
programme called ‘Shooting the messenger’ (2012–20178). Explicitly aimed at integrating disease prevention into 
environmental/nature management, the initiative supported community-based stakeholders with laboratory 
analysis in return for information and data sampling. An informant from RIVM involved in the cooperation said: ‘We 
asked all stakeholders how they could help us and how we could help them. We approached people who work in 
these areas, and then awareness grew that also people using these areas for recreation purposes were exposed to 
ticks. They became interested in the prevention of tick bites.’ RIVM facilitated this situation by spending 20% of its 
tick-borne disease research budget on stakeholders. As a result of this collaboration, the researchers held three 
sessions a year with the green and animal stakeholders to discuss the problem of ticks in their areas, and they 
developed a local risk management tool focusing on hotspots.  

7 They theorised that the occurrence of TBE virus in such isolated locations may be the result of dense beech tree coverage 
(beechnuts are a major food source for roe deer and rodents). 
8 https://www.wur.nl/nl/nieuws/Geintegreerde-aanpak-natuurbeheer-en-ziekte-van-Lyme.htm 

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Coordination meetings with zoonoses and health experts  
The emergence of TBE virus in deer and infected ticks was discussed as a potential threat at the routine, monthly Signal 
Coordination Zoonosis (SO-Z) meeting. Upon detection, RIVM’s National Coordination Centre for Communicable Disease 
Control called a dedicated coordination meeting to specifically discuss and assess the risk of human transmission. At this 
stage a standardised list of stakeholders was consulted to assess the full risk. In the case of TBE virus detection, these 
stakeholders included experts in entomology, microbiology, epidemiology, public health, the local Municipal Health Service 
(GGD Twente), clinicians, veterinarians, occupational health doctors and wildlife experts. The RIVM communication group 
also attended the meeting, as is common during all response phases. 

At the coordination meeting, it was concluded that human TBE cases were not likely to be expected on a large scale. 
It was decided to raise awareness of TBE among clinicians in the affected region (Sallandse Heuvelrug) and to provide 
information to microbiologists and public health specialists (through a direct mailing service (LabInf@ct) and an alert 
report #2860). RIVM then informed green partners and hunters who had participated in the serological survey, the 
visitors’ centre at the Sallandse Heuvelrug National Park, and the regional Forestry Division. According to respondents, 
they were asked to restrict distribution of the TBE information so as not spread unnecessary anxiety. The source of 
this request remained unclear. On 30 June 2016, RIVM reported that Dutch Ixodes ricinus ticks had tested positive for 
TBE virus-Eu in the Sallandse Heuvelrug region [34]9. The institute also broadened its investigation to sheep, goats, 
raw milk and cheese.  

Q-fever inter-sectoral experience motivating a medical priority 
A previous, major outbreak of Q-fever (Coxiella burnetii) among goats between 2007 and 2010 was considered the 
largest registered incidence in the world [35]. This event served as the main reference model on how to deal with 
a zoonotic disease event. In particular, the Q-fever event was the first time that it became evident that inter-
sectoral collaboration was required as a result of a zoonotic outbreak, leading to a plethora of coordination 
challenges [36]. One particular point of discussion had been whether inviting private sector organisations and non-
professionals (including patients) to participate would be an effective use of resources in the Q-fever emergency 
response. A major sticking point was the balancing of commercial and agricultural risks versus human health risks. 
For RIVM-LCI, one lesson learned was that content-related engagement was not desirable, because inter-sectoral 
involvement would influence (’cloud’) medical decision making, which is the top priority. Accordingly, non-medical 
involvement should begin at the response phase, based on the risk assessment presented by the medical core, and 
with full involvement of a broader group of stakeholders in terms of the measures to be implemented. The medical 
advice provided by the risk assessment coordination meeting would be presented to other collectives at ministerial 
level (e.g. through the Outbreak Management Team Zoonosis, OMT-Z), after which inter-sectoral discussions could 
take place.  

Conclusion 
During the pre-incident phase, collaboration with community-based actors, particularly foresters, hunters and 
herders, facilitated detection of TBE in deer and ticks. After detection, RIVM-LCI invited a selection of zoonotic 
experts to discuss implications, while retaining medically-based decision-making.  

4.2.2. Incident phase 
The first human TBE case and citizen science synergy 
On 6 July 2016, one week after the alert report and Lab-Infact communication, the Municipal Health Service in Utrecht 
region were notified of a 67-year old man with serological confirmation of TBE. Interviews confirmed this and further 
analysis of the tick suggested that the tick bite had occurred in a national park in the Utrecht region (Utrechtse 
Heuvelrug). In response to the detection, the Utrecht Municipal Health Service interviewed the TBE patient and collected 
and further analysed ticks in collaboration with RIVM. On 21 July, a second patient was confirmed [12], a 45-year-old 
gardener living on the border of the Sallandse Heuvelrug National Park. Patient interviews excluded the possibility of the 
virus having been contracted during foreign travel. Shortly afterwards, a third case was identified in the Salland region, 
although this person had been in endemic areas of Germany during the TBE incubation period.  

Table 1. Timeline of 2016 TBE event 

Date 

Event 

30 June 
6 July 
14 July 
21 July 
21 July 
Shortly afterwards 

RIVM notifies of TBE virus reports in animals 
First case confirmed 
Second case admitted to hospital 
Second case confirmed 
National press release concerning the first case 
Third case notified but had travelled to Germany 

9 Public announcement on the website: 
https://www.rivm.nl/Documenten_en_publicaties/Algemeen_Actueel/Nieuwsberichten/2016/Teken_encefalitisvirus_in_Nederland_aangetroffen 

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The clinical detection of TBE just one week after the initial alert was seen as a success story. However, from a 
community engagement perspective, there was an additional influence that facilitated isolation of the virus . Before 
becoming infected and showing symptoms, the first human patient had already been part of a citizen science 
initiative called ‘Tick-radar’ (https://www.tekenradar.nl/). The Tick-radar was developed by the University of 
Wageningen, RIVM epidemiologists and biologists with experience in participatory science projects (e.g. the 
Natuurkalender 10). The tool, which is available via an internet site, predicts and monitors incidence visually on a 
map for each municipality (Figure 7). The tool is also available through a mobile phone app ‘Tekenbeet’ released by 
RIVM as a public information tool for lyme borreliosis prevention. Since 2012, the site has provided education and 
outreach concerning lyme borreliosis and tick-borne diseases, while also enabling people bitten by ticks to register 
their location, including contact information and, if relevant for pending research, send in their ticks. As the first 
human case diagnosed with TBE in the Netherlands had been a Tick-radar participant, he understood the 
importance of keeping the tick after being bitten11. This facilitated the finding of the source. As a rapid 
communication on the first case in the Eurosurveillance journal confirms: ‘Fortunately, the patient had saved the 
dead tick, which was positive for TBEV by qRT-PCR with a Ct value of 21’ [11].  

Figure 7. Screenshot of the home page of the Tick-radar, 14 January 2018  

Source: https://www.tekenradar.nl/ 

Adapting to new stakeholders in a zoonotic context 
After confirmation of human cases, RIVM-LCI decided to scale-up to develop a response team. Respondents from the 
institute mentioned that the zoonotic context meant they had to adapt in terms of stakeholders, some of whom - 
particularly those from the green sector - were new to RIVM-LCI. RIVM-LCI convened a meeting to conduct a 
stakeholder analysis for risk groups, detailing relevant relationships for people working in green areas, and those 
visiting outdoor areas. The aim of the meeting was to optimise collaboration with relevant organisations to reach risk 
groups as best as possible. A report on the meeting stated: 

’An important point during an infectious disease incident is that during the event each stakeholder manages their 
own environment and works with their own networks. In a stakeholder analysis there is a certain aim you want to 
reach by building on the idea that one organisation cannot reach all by itself. You want to organise a network of 
organisations that start to collaborate to reach the common goal.’ [37] 

10 The idea of the ‘Tick-radar’ (and other similar radars such as the mosquito radar) is based on the ‘Nature Calendar’ (Natuurkalender) which 
enables citizens to give their observations on annual natural cycles, such as the migration of birds, thus monitoring, analysing and predicting 
the cycles over time. This WUR-RIVM-volunteer project also measured ticks density throughout the country with the help of nature education 
volunteers for a period of 10 years. This provided more detailed information on tick activity period, tick infection rates, tick density and tick 
risk areas. 
11 RIVM had encouraged people to send in ticks for research purposes before this occurrence, but this programme had been closed by the 
time the incidents occurred. However, the patient had still had the foresight to save the tick. At present, people are not being encouraged to 
send ticks in to RIVM anymore for lyme borreliosis diagnosis, because no firm conclusions on lyme borreliosis can be made on the basis of 
the tick, and research studies have sufficient participants (see: https://www.tekenradar.nl/over-tekenradar-nl/overig-tekenradar-
onderzoek/wat-moet-ik-met-mijn-teek-doen). 

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During the stakeholder analysis the coordination group identified the information needed by stakeholders from the 
coordination group, and what the stakeholders could offer RIVM-LCI. With respect to risk groups, although it was 
easy to ascertain what information was spread by different organisations, a more difficult task would be to know if 
the information actually reached the audience and if there was compliance. The coordination team wanted help 
from all stakeholders in collecting this information, while at the same time being able to support the same 
stakeholders by providing ready-made information. For medical care stakeholders, close collaboration with 
professional associations was seen as an effective way of reaching risk groups, while simultaneously raising 
awareness of TBE among medical doctors. Dissemination of information and updates regarding ongoing studies 
concerned with TBE were seen as supportive instruments for this stakeholder group. With respect to government 
and media institutions, emphasis was placed on accurate, audience-specific, up-to-date information to avoid both 
unnecessary public unrest and the spread of incorrect information. Finally, the report noted that the large number 
of stakeholders belonging to knowledge institutions and other associations were key partners for supporting 
ongoing research studies and dissemination of information to patients. If studies showed that certain population(s) 
were more at risk of TBE, more local parties could be included in direct information outreach. RIVM-LCI singled out 
the Association of Forest & Nature Owners (VBNE) as an especially relevant partner, as they are an umbrella 
organisation including various green partners. Figure 8 shows the result of the full stakeholder analysis.  

Public alignment of TBE in the community-based lyme borreliosis prevention 
network 
Since no new cases emerged in the immediate period after detection of the first two patients, the response team 
agreed that the infection would probably be slow to spread and efforts shifted towards prevention and media or 
public communication. As the generic processes for dealing with TBE overlapped with those for lyme borreliosis, 
RIVM-LCI took the decision to align response efforts within lyme borreliosis prevention. This meant that although 
the Municipal Health Service involved in the initial coordination meeting started notifying general practitioners, 
neurologists, children’s doctors, microbiologists and municipal politicians about TBE, public health communication 
(e.g. to scout groups, campers, those spending time in recreational areas, nature organisations, libraries, etc.) 
focussed more broadly on lyme borreliosis prevention. One of the main reasons for this was that lyme borreliosis 
included a ‘behavioural’ or ‘actionable perspective’ since the swift removal of ticks can reduce infection risk 
considerably. TBE virus, on the other hand, is transmitted shortly after the bite, so quickly removing the tick will be 
much less effective in preventing infection. Public education regarding TBE should therefore emphasise tick bite 
prevention rather than the early removal of ticks. However, at present, public information still focuses on early 
removal, since research has shown that people do not take preventive measures in the Netherlands. 

The focus on lyme borreliosis made it easy to connect with the network of actors involved in a national public health 
prevention campaign. ‘Week of the Tick’ is an annual event coordinated by the National Green Lyme Working Group 
(GLWG). GLWG developed in the 1990s as a result of outdoor workers’ concerns regarding the impact of tick-borne 
diseases, particularly lyme borreliosis. The Group has now has become a think tank and communication platform, 
exchanging information and participating in research on lyme borreliosis and TBE. At the GLWG meeting observed for 
this study, updates on current RIVM studies were shared, with the explicit aim of sharing results before the next Week 
of the Tick event. The Dutch focal point (RIVM) and its municipal partner (GGD) joined the meeting, which occurs 
twice a year. Figure 8 shows the social network of this multisector group.  

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Figure 8. National Green Lyme Working Group sub-network 

Red denotes a dominant health focus.  
Size of node denotes brokerage roles in the larger network analysis (shown in Figure 6) 

What is striking about this visualisation is how the GLWG group integrates both health and environmental 
stakeholders in its tick prevention efforts. The network is an excellent platform that facilitates public health 
prevention and response among green partners in the event of an epidemic 12. 

It was challenging to try and exploit existing relationships that developed through another, closely-related disease 
domain. As one respondent noted: ‘TBE was a very different situation, but the same people were involved. They 
were not used to these emergency questions, needed more information to answer these questions and started to 
become anxious. It appeared that there were other relations with the same stakeholders in case of threat. We 
needed experts to explain and soothe the situation.’ In particular, first-line health workers appeared to need more 
information and began to wonder why they had not been vaccinated. There was a lack of clarity as to why the 
decision had been taken to align the diseases. At the time of the study the emphasis was still on lyme borreliosis 
rather than TBE, although RIVM has been slowly integrating TBE into its outreach.  

Little social media or media attention 
Several major Dutch newspapers and websites were analysed, and a full list of references and summaries appears 
in Annex 8. Before the first case, only a few media reports had been published about TBE virus having been found 
in deer in the Sallandse Heuvelrug National Park. On 21 July 2016, before detection of the second and third cases, 
RIVM sent out a national press release reporting on the first TBE case, and explicitly mentioning the Utrechtse 
Heuvelrug as place of infection. After 21 July, all media publications were factual and short and referred to the 
RIVM website. However, none of them addressed the second and third cases. Topics included the background of 
the disease, modes of transmission and symptoms. News articles placed emphasis on ticks spreading the virus to 
humans and the low risk of contracting TBE. A few articles compared the risk of contracting TBE with the risk of 
contracting lyme borreliosis (nu.nl, Telegraaf, NOS, NRC, AD). Symptoms were described and various articles 
advised seeing a medical practitioner if having complaints (dokterdokter.nl, NRC, GGD). All reports mentioned 
preventive measures, such as checking the body for ticks and removing them, avoiding tall grass, and wearing long 
trousers in green areas. One report mentioned precautions for landowners (NRC 31-3-2017). Medical practitioners 
were asked to take TBE into consideration (Blik op Nieuws, WUR). Some reports briefly referred to RIVM research 
on deer. Three articles mentioned the German name for TBE, fruhsommer-meningoenzephalitis (FSME). Only NRC 
and VBNE mentioned specific risk groups, such as hikers and workers in the outdoor/green sector. Overall, it can 
be concluded that media attention was accurate but that there was little of it.  

The municipal health services involved did not directly contact the media, because communication was coordinated 
nationally through RIVM’s communications department. After the RIVM-LCI national press release, local media 
made contact, and journalists visited the affected areas and concluded: ‘nobody was worried.’ In both regions there 
was little media or public attention, not even in the affected municipalities. In Utrecht, authorities received only ten 

12 When meetings start, the Chair states: ‘I always start the meeting with a message. Everyone communicates in their own way 
to their supporters. But we do this together at the same moment. And that is what we do in the Week of the Teek [Tick 
awareness week]’. 

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TECHNICAL REPORT 

questions. One possible reason for the low response, particularly in the eastern part of the country, might have 
been that the sickness is typically known under the German name of Frühsommer-meningoenzephalitis and thus 
the link to TBE was intuitively not made. Only one citizen asked to be vaccinated in that region. A respondent from 
this area mentioned that ‘even in the village where the second patient lives nobody spoke about it, and these 
people had a lot of social contacts. Not even the local politicians wanted information.’ Respondents thought that 
during the period when the TBE cases emerged the media appeared to be preoccupied with other events, such as 
the ongoing riots in Egypt, Zika virus, and many people were away on summer vacation. 

At first, respondents from the Municipal Health Services downplayed the media issues, noting that lyme borreliosis 
is an issue which only receives a few questions each year from the public (about 15). They also noted that people 
tend to first visit the RIVM website before going to local health authorities. In particular, they said: ‘We try to keep 
low key. We did not know whether to exaggerate the problem, get people worried. So we always refer to the same 
source: the RIVM website.’ They indicated that they had some agreement with RIVM that local translation of news 
was their responsibility and that they had some media capacity in-house. Nevertheless, the unexpected lack of 
response by the media was perceived as a blessing in disguise for one of the two municipal health authority 
respondents, since there had been concern that the media might exaggerate the news. If this had happened, it 
would have led to serious capacity issues because at the time they were also dealing with an outbreak of scabies 
and mosquito-borne diseases. We also learned that the second TBE case in the Sallandse Region, for whom foreign 
travel could not be excluded as cause - had not been communicated to the media at all.  

RIVM benefits from a social media rumour control system, using available software packages and dedicated 
communication staff. If needed, communication staff can find ways to contact active, well-connected social media 
users to engage with them in private dialogue. By showing some understanding,  the institute helped to alleviate 
frustration among users. Some of the social media users even worked with RIVM, providing information on 
developments. Here too, we can conclude that no significant misperceptions or rumours were reported during the 
event and none have been reported since.  

Medical priority in inter-sectoral engagement 
The Dutch risk assessment system focusses on a medical perspective. The decision was taken by RIVM-LCI to continue 
to do this as it was perceived as crucial to retain medical objectivity when assessing the medical risk of a potential threat. 
For this reason RIVM-LCI respondents considered it important to limit the stakeholders involved in the risk assessment to 
those with medical functions. The role of the community was recognised by public health respondents, but not 
considered important until the stages following the medical risk assessment (i.e. when a response action would need to 
be discussed and decided-upon based on the medical risk assessment.) Discussions were held with the respondents 
concerning the pros and cons of inviting other, non-medical stakeholders at the risk assessment stage. Although the 
added value of such participation was recognised, there was also concern that this inclusion could dilute the main aim of 
objectively assessing the medical risk of a given threat. The respondents explained that even the participation of 
policymakers should be avoided at this stage, to ensure a strict medical assessment. At the national level, the 
involvement of other sectors was considered as relevant in the subsequent response phase, when actions need to be 
taken that could have an impact on communities and other stakeholders.  

Respondents within RIVM were not united regarding this issue. A practical reason for more participation was that 
broader community engagement during coordination might become helpful. For example, when discussion went 
beyond health risk assessment and moved to the action required ‘to avoid counterproductive measures being taken’. 
An additional reason was that community organisations are not always familiar with the public health emergency 
preparedness and response procedures. For example, hunters do not automatically consider the municipal health 
service as a point of entry for information. At a children’s farm, the coordinator told us that many of their 
volunteer-run sister organisations did not know where to get their information from.’ In this case, involvement in 
response at an earlier stage could be of value, because it would ensure understanding of how and why decisions 
were made, strengthening relations and improving understanding of subsequent actions taken. Respondents from 
outside RIVM suggested some alternatives to direct inclusion of more stakeholders during coordination or response. 
For example, a separate action meeting directly after public health decisions had been taken, or contacting 
stakeholders right after coordination meetings to provide updates. Another consideration would be to involve 
communities at the pre-event phase when systems were being developed and assessed. By including their 
contribution at this stage, ownership could be shared, offering a greater understanding of the processes involved in 
the risk assessment phase. 

Indirect communication to key stakeholders 
An unintended consequence of the decision not to include inter-sectoral partners in coordination until later was 
that the green partners in whose areas the TBE cases had appeared received information of human TBE cases 
indirectly through the media. This issue was especially difficult for those who had been notified by RIVM 
representatives to withhold initial information on the detection of TBE virus in deer, to avoid anxiety among their 
audience and workers. In response, information was carefully managed. From the Municipal Health Service in one 
of the affected areas we understood that employees in the green sector had already heard about TBE virus in 

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Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

animals, but one of the green sector managers expressed frustration that the information about the first human 
case was disseminated only through the media: 

‘Suddenly I read it in the paper, which meant that the carefulness of spreading the information does not hold 
anymore. I would have though it appropriate if RIVM had notified us of the press release in advance, because I 
could then freely spread the information with my terrain managers before they also read it in the paper. 
Because after all, they are the ones who get questions from the public.’  

An additional challenge noted by one of the RIVM researchers was that this development endangered relations 
between zoonotic researchers and community-based nature partners. One respondent expressed it like this: 
‘Because they were not updated about TBE being a life threatening virus. Everyone thinks nature is public domain, 
but it is owned by someone. We should have involved them from scratch.’  

Community engagement through health guidelines 
For TBE, RIVM-LCI had developed a health guideline in October 2010, which was amended on 21 July 2016 
because of the new human-TBE epidemiological situation. Additional resources were then added on 15 August 
2017. However, the most recent version only mentions the first human case (neither the second, nor the suspected 
third) in its epidemiological section. A link to the digital map of infectious diseases in the Netherlands shows the 
incidence of tick bites, not further information on TBE. As with other infectious disease guidelines, this guideline 
does not detail advice on community engagement or stakeholder analysis from a preparedness or response 
perspective, despite the fact that zoonosis involves a strong inter-sectoral component. It does mention a very 
limited list of four risk groups: ‘foresters, woodcutters, campers and hikers.’ 

One of the respondents, who is active in the National Green Lyme Working Group, said that when TBE virus was 
found in deer in some of the areas of the Netherlands, there were concerns among green and nature organisations 
regarding the risk to employees. Since RIVM research is ongoing as to the specific risk of TBE, guidance has 
remained open. As a result, the working group has started looking at models from neighbouring Germany to 
provide advice to its members. One issue was the request for vaccination from people working in the field 
experiencing many tick bites. At present, RIVM does not advise vaccination.  

Conclusion 
While detection of the first human TBE case was clinically driven, it was thanks to the citizen science initiative ‘Tick-
radar’ that the first TBE patient knew to keep the tick that had bitten him. With only a few cases and little media 
interest, the RIVM response team decided to align TBE response with lyme borreliosis prevention efforts. This was 
also due to the fact that post-bite behavioural action has a limited effect on the chances of contracting TBE 
infection. This action facilitated a second community engagement synergy through the involvement of the National 
Green Lyme Working Group, which collaboratively hosts a lyme borreliosis prevention week, also applicable for TBE 
control. Motivated by a green occupational health perspective, the National Green Lyme Working Group has a 
vested interest in integrating any tick-borne diseases into their mission. However, we also learned that the new 
emergency structures which were introduced through TBE resulted in a different orientation and role for these 
partners. While the RIVM-LCI team was aware that new stakeholders had to be included in the zoonotic context, 
efforts were still made to keep decision-making free of other (inter-sectoral) influences. Information about the first 
human TBE case reached green actors through the media instead of through their own channels, leaving outdoor 
workers unprepared for dialogue with the concerned public. Finally, no information on community engagement was 
included in the TBE disease guidelines. 

4.2.3 Post-incident phase 

At the time of this study, no comprehensive, post-event evaluation had been performed. Lessons learned had not 
been explicitly gathered or fed back into planning, because the TBE event was not perceived as significant enough. 
While the emergence of TBE is still under investigation, only one new case of TBE was identified in the period 
between August 2016 and our fieldwork in November 2018. In addition to the previously mentioned case reports, a 
small review was written by the Utrecht Municipal Health Service with inter-sectoral partners. It notes that since 
the first medical communication about human detection of TBE, the number of TBE diagnostic tests has increased 
four-fold (to around 100 requests per year) [38]. A presentation by RIVM researchers during the National Green 
Lyme Working Group meeting suggested that in response to the event RIVM has moved its focus to increasing 
awareness among medical partners to improve detection, and adjusting public education about tick bites to include 
more TBE-related information. In addition, RIVM has initiated a number of studies, including some with 
community-based partners13.  

13 Ongoing studies at the time of writing include: (1) Another serological study with the Dutch Wildlife Health Centre among deer, 
(2) Serological research among small grazing animals in collaboration with the Animal Health Laboratory Service in Twente and 
Utrecht, (3) TBE virus serology among 100 neurological patients from 2015 and 2016 in the region of Twente (eastern 
Netherlands) to trace suspected neuroborreliose and negative lyme borreliosis serology, and (4) TBE serology among people with 
high occupational risk of tick bites (mostly outdoor occupations). 

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4.3 Vulnerable and hard-to-reach populations 
Interviews identified several hard-to-reach or vulnerable populations and groups in relation to tick-bites. Those 
mentioned several times were pet owners, scout group members, schoolchildren, day-care children, garden owners and 
volunteers working in green areas. The Municipal Health Services in Utrecht noted the need to focus on asylum seekers 
who live in forested areas. In addition, hikers and foreign tourists were identified. These groups appear to be 
disconnected from the general prevention campaigns and to lack systematic registration and monitoring systems, even 
though they often frequent green areas or even own large pieces of land. For example, the national scouting board has 
only run a few small preventive campaigns, limited to standard information on the website, a poster for management, 
and some collaboration with the Week of the Tick campaign. Local scout groups are often not aware of risks, and do not 
regularly monitor young scouts. Moreover, parents do not always check for ticks at home or ticks are discovered too late. 
There is a lack of organised engagement with these groups on the part of medical practitioners, the National Green Lyme 
Working Group and RIVM and few instances where there is a possibility to interact, such as during the patient conference 
So Strong [39], focusing on alternative healing approaches.  

Another example of a vulnerable group are volunteers working with the many lyme borreliosis and TBE institutional 
stakeholders. Many hunters are in contact through voluntary organisations, however these lack occupational health 
services. The Utrecht Region Forestry Service has 230 volunteers many of whom go into the field. Although they 
are trained in lyme borreliosis prevention and provided with tick repellent clothing, they have no access to the 
occupational health services of the Forestry Service. The situation is even worse as regards children’s farms, which 
are often volunteer-run, where neighbourhood volunteers come and go. In some instances, more professionally 
managed children’s farms with membership of the Association of Children's Farms (vSKBN) that include 
occupational health services often function as information brokers for their volunteer-run partners.  

In some cases, occupational health services supporting vulnerable populations appear insufficiently familiar with the 
extraordinary impact of LB in the green sector. One respondent noted that his agency had shifted contracts because 
of dissatisfaction with the attention to tick-borne issues. One suggestion that came up in a community focus group is 
to facilitate better involvement of organisation that accredit occupational health services (e.g. Groenkeur, Erbo) to 
ensure that appropriate LB questions, information and preventive structures are implemented annually.  

4.4 Additional lyme borreliosis-related community 
engagement findings 

Information in this section does not directly concern the TBE event, but relates to observations derived from the more 
general lyme borreliosis context which are relevant for disease preparedness and response coordination in general. 

4.4.1 Lyme borreliosis patient synergies 
A remarkable situation in the Netherlands is the way in which the lyme borreliosis patient population and the 
authorities have managed to find collaborative space, despite inherent tensions resulting from the difficult diagnostics 
of Lyme disease. Lyme borreliosis patients often share their perception that health authorities are not doing enough 
because they define the ‘Lyme patient’ much too narrowly. Both patient organisations are vocal on this matter, but the 
Tick bite Patient Organisation (Stichting Tekenbeetziekten) in particular strongly supports this point of view. In 2010, 
frustrations led the Dutch Lyme Patient Organisation (at that time still including patient activists who later started the 
separate Tick bite Patient Organisation) organising the collection of 70 000 signatures through an online forum called 
Lymenet14 to express their dissatisfaction to the Ministry of Health, Wellbeing and Sports15. Despite scepticism from 
the Dutch Health Science Council , the Ministry responded by initiating a number of projects. These included (1) 
funding mechanisms for further lyme borreliosis research through a new Programme for Lyme coordinated by the 
Dutch Organisation for Health Research and Innovation in Care (ZonMw) and (2) the establishment of the new Dutch 
Lyme Expertise Centre (still under development at the time of this study). However, there were tensions as to who 
should lead this new Centre, and the patient organisations and RIVM negotiated for three years on this point. 
Eventually, this lengthy process led to the developing of sufficient mutual trust for collaboration, after both sides 
realised that they shared the same overall goal and were both acting with integrity. (The Dutch form of consensus 
building is a well-known cultural practice referred to as the ‘polder model’) [40].  

While the impact of the Dutch Lyme Expertise Centre remains to be seen, the participation of the NVLP patient 
organisation in this collective is perceived as a success, with high expectations regarding media and public outreach16. 
On the other hand, the pace of this development has been met with disappointment by a number of the respondents. 
Furthermore, some respondents argued that generally the balance might have gone too far in favour of the patient 
agenda, particularly since patient representatives are included in the selection committee of the ZonMw scientific 

14 LymeNet Nederland: Informatie over de ziekte van Lyme. 19-01-2018. URL: https://www.lymenet.nl/. 
15 The initiative enlisted the support of prominent politicians (some also suffering from lyme borreliosis) and consumer advocates, 
and included a persistent letter campaign by patients to the Ministry of Health (VWS) 
16 The Foundation for Tick Bites left the collaboration shortly after agreement was reached. 

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programme on lyme borreliosis. They fear that this may lead to the exclusion of projects that are relevant to other 
priorities than the chronic (treatment-focused) patient perspective, such as research into vaccination or other 
preventive measures. Another concern relates to the risk of organisational changes within the patient organisation 
itself, which as a volunteer organisation is susceptible to the shifting political agendas of individuals. Since the 
organisation has a vocal minority which is critical of slow (or uncommunicated) research results, there is a real risk 
that the current collaborative mood will disappear. 

4.4.2 Private sector synergies 
Synergies with private partners exist, but most respondents said that they treated such collaboration with caution 
(even some of the lyme borreliosis patients, who saw few alternative options). These include private laboratories or 
clinics with treatments that are not evidence-based or only to a limited extent (e.g. ILADS, Waldorf); pharmaceutical 
laboratories providing alternative diagnostic tests that are not always validated (e.g. Innatoss Laboratories), or 
companies providing insect repellent sprays (e.g. Care+). Privatisation is also visible in the green sector, for example 
in the form of commercial camping companies, or municipalities outsourcing basic landscape and nature management 
services. One focus group respondent noted that managers of commercial vacation parks often do not talk about the 
issue as they are driven to protect their commercial image of being ‘clean and green.’ 

Local governments interested in business development capitalise on disease-specific private initiatives. The Province of 
Flevoland aimed to attract lyme borreliosis-related businesses, and even some major stakeholders such as the 
Amsterdam Medical Centre and Wageningen University Bioveterinary Research sent in proposals. Yet scepticism about 
the initiative dominates because the entrepreneurial spirit of self-sufficiency and small amount of incubation capital 
appeared difficult to combine with the public health agenda. As a medical expert noted: ‘Their only goal is to generate 
money. They are not trying to solve the disease but use the disease as economic input for the province. Up to now 
nothing came out of it, so I do not think this is a valuable partner.’ In all cases, private synergies do show potential for 
public health risk communication and awareness-raising and are a form of community engagement. However, as they 
still come with commercial agendas, these conflicting interests are an issue of concern for tick-borne disease 
prevention and preparedness. Respondents proposed the involvement of external quality control watchdogs as a 
means of positively exploiting this type of synergy.  

4.4.3 Inter-sectoral coordination 

More coordination 
At all levels respondents emphasised the need for more inter-sectoral coordination. Despite the previous Q-fever 
experience, the placement of agrarian and environmental issues under the Ministry of Economic Affairs remains a 
challenge for the integration of health preparedness issues further down the chain. Lobbying for inter-sectoral 
coordination between the Ministries of Health , Agriculture, Nature and Husbandry and Economic Affairs is slow-paced. 
This is particularly problematic for the financing of environmental or agricultural interventions that reduce health 
risks17. One barrier to infectious disease preparedness is what was referred to by respondents as the ‘Green Cloud’, 
seen as the tendency by non-health stakeholders to protect the public image of green and rural (agricultural) space as 
‘healthy’ (and a source of tourist and leisure revenues). Added to this are structural issues, such as the misalignment 
of governance between the Ministries. Respondents explained: ‘The problem is while we work for Municipal Health 
Services, our regional partner for whom we are responsible, the Ministry of Agriculture works with provinces. They say 
provinces should make policy. And so they cross each other.’  

The inter-sectoral collaboration of the National Green Lyme Working Group (GLWG) has already been noted. The 
GLWG mostly represents green, patient and occupational health stakeholders, but has less involvement with some of 
the wildlife, veterinary and animal groups. One respondent from an animal group also expressed some criticism that 
GLWG ‘had a hard time getting to active measures, because everyone was pointing fingers to others suggesting some 
action was their responsibility.’ At the local level, the two Municipal Health Services (GGDs) who both had experience 
of TBE only recently launched initiatives for closer collaboration with green partners. Most Municipal Health Services 
appear not to be making such strategic efforts, although local initiatives exist with other zoonotic diseases. 

Promising ‘One Health’ approach 
The ‘One Health’ approach was often mentioned as a promising strategy. However, there was also criticism of this 
concept, since it appears to be very health-centric and does not place equal priority on agrarian, ecological or 
economic issues. ‘Health in all policies’ was suggested as an alternative (referring to the Dutch Integraal 
gezondheidsbeleid, or ‘comprehensive health policy’). The value of ‘One Health’ was illustrated by a schematic 
diagram created by researchers at Wageningen Bioveterinary Research that shows the drivers of lyme borreliosis 
across inter-sectoral dimensions [41,42] (see Figure 9). One of the main uses of this diagram has been to 
encourage stakeholders to see how their work processes are connected to those of ‘others’, facilitating respect for 
each other’s background, and encourages communication and trust building to overcome inter-sectoral hurdles. 

17 One respondent provided the example of the desire for a fence for two camping ground sites to prevent deer from coming in. 
The cost, EUR 20 000 over 20 years was more than camp-site owners could afford. 

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TECHNICAL REPORT 

Figure 9. Schematic diagram showing the drivers of lyme borreliosis across inter-sectoral dimensions  

Source : De Vos et al., 2016 [42] 

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Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

4.4.4 The role of RIVM in public dialogue 

Many respondents emphasised the important role of RIVM which is responsible for public communication and 
awareness. While RIVM-LCI hosted rumour control communication specialists relevant for TBE, respondents 
generally perceived the Dutch health authority to be cautious in engaging the public in discussions on lyme 
borreliosis18. A medical respondent remarked: ‘Sometimes those creating social anxiety receive way too much 
attention from the media. I think it is the role of RIVM to keep it all real. A role that is not about reassuring that 
everything will be all right, but about informing the public of the facts… They have to be visible as an authority 
showing evidence and explain their conclusions.’ 

Respondents argued that RIVM researchers could be more communicative in explaining to the public how, or how 
well they are doing their job and reaching their conclusions. People trust researchers more when they explain to 
them how their evaluation and research process works. Respondents from outside RIVM also noted that an entire 
network of community-based partners is available to support such a role.  

RIVM has recently been making efforts to ensure that communication is a more central strategy. Capacity issues 
seem still a barrier to this management shift. Within the RIVM-LCI, a number of initiatives such as a tick-specific 
mobile phone app [43,44] and efforts to develop and evaluate a game for school children [45] do indicate that 
public education and engagement is a priority issue. The RIVM communication department is aiming to work 
closely with the new Dutch Lyme Expertise Centre and has favoured the Tick-radar citizen science initiative as one 
of its priorities for communication of news. However, some community-level focus group participants felt that the 
communicative value of the easily accessible database and website still has much more potential.  

18 One research-oriented respondent indicated a wish and willingness to reach out to patient organisations at a lyme borreliosis 
conference that showcased unconfirmed (‘alternative’) treatments often attended by more ‘activist’ lyme borreliosis groups. 
However, leadership at the institute considered this too risky and the outreach did not happen. Unfortunately, because medical 
doctors also do not go to these conferences to explain their position, there is no dialogue. 

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5. Good practices 

This final section outlines a set of 17 good practices for promoting collaboration and synergies that have been identified 
in this study. They include actions that have already been implemented in the Netherlands to a greater or lesser extent 
as well as areas where improvements could still be made. These actions are presented as suggested objectives that may 
be worked towards, both by the authorities in the Netherlands and those in other EU Member States.  

Promoting collaboration and synergies between the 
authorities and the community 

• 

• 

• 

• 

• 

• 

Use brokers to disseminate preparedness information and engage the whole community network as a 
resource for early detection, coordination, and research. The network of community actors engaged with 
lyme borreliosis/TBE is large and wide, extending deep into the community. A ‘Whole Community’ approach 
may be considered here 19, whereby community-based actors are not only seen as a means for 
disseminating preparedness information, but also as a resource for early detection, coordination, response 
and research. Specific attention should be given to community actors with links to multiple social groups, 
such as green occupational health professional organisations.  
Cultivate relationships between zoonosis researchers and community-based monitoring networks such as 
hunters and forestry workers, and promote citizen science to increase sensitivity of surveillance. For 
zoonosis in particular, community-based groups have a direct stake in detection. Close relationships 
between zoonosis researchers and hunter or foresters, for example, can be exploited to facilitate early 
detection, as can citizen science projects such as the Dutch Tick-radar.  
Engage networks of closely-related diseases but clarify differences in risk. Pre-existing networks of disease-
specific community actors can be used to engage with new, closely-related diseases. For example, the 
extensive community-based network relating to lyme borreliosis (e.g. National Green Lyme Working Group) 
was an effective platform for channelling information and obtaining additional resources for TBE 
preparedness and response. However, the differing risk expectations associated with various disease 
histories may prove challenging. 
Integrate community engagement advice in preparedness planning, including disease outbreak guidelines. 
Community engagement guidance may be desirable in the case of zoonosis where inter-sectoral 
coordination is complex. Without guidance, relevant community level partners may be left out of the 
process, increasing the risk of miscommunication and counterproductive actions, and losing out on a 
preparedness and response resource.  
Invest in trust building with community-partners that are mistrustful by focusing on win-win solutions, 
sincerity and strategic patience. The development of trust and the cooling down of adversary relationships 
between health authorities and lyme borreliosis patient organisations was the result of long-term 
discussions, patience and the recognition that there were shared goals. The resulting patient synergies 
might be the key to success in public prevention programmes. However, there are limits to patient 
involvement as regards decisions on the funding of basic research which falls outside the patient agenda.  
Engage with commercial initiatives as opportunities for public engagement while actively ensuring that 
communication is accurate, both to the public and among the parties involved. While commercial partners 
can provide access to public education channels, there is a general suspicion which may not always be 
effective for engagement. An open, yet critical engagement is needed to avoid the spread of simplistic ideas 
or information. These networks should be used positively for public preparedness.  

Communication 

• 

• 

Continue to support and invest in the maintenance of cross-sectoral, community-based platforms. 
Community-based disease networks provide excellent resources for the coordination of preparedness public 
education campaigns. For example, the annual ‘Week of the Tick’ campaign is organised by a coalition of 
cross-sectional stakeholders and is an excellent way to reach many more stakeholders than the authorities 
could do by themselves. 
Continue to engage stakeholders that were involved during early detection throughout all subsequent 
phases of the response. The request to keep information about TBE virus in deer restricted internally to 
green partners was followed by a public media announcement of a human TBE case without early 
notification to the same partners. This caused frustration among the green partners who had tried to 
manage restricted dissemination and led to a breakdown in trust.  

19 Federal Emergency Management Agency (2011) A whole community approach to emergency management: 
principles, themes, and pathways for action. FDOC 104-008-1. Washington (DC): Federal Emergency Management 
Agency. 

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• 

• 

• 

Monitor human resource capacities with respect to local media outreach when uncertainty is high. The 
expectation that local municipal health services are able to manage local media attention ignores the impact 
of timing and the potential of a media hype which may overwhelm local capacity.  
Support transparency and communication of ongoing processes (e.g. research progress or decision-making 
trajectories) even without final conclusions or decisions. While it is crucial to communicate results and 
decisions only after careful review, keeping the public informed of the quality and methodologies of ongoing 
processes builds trust.  
Invest in communicative capacity in the central health and regional authorities to provide an evidence-based 
voice in public discourse, in close collaboration with community-based partners. A key role for coordinating 
authorities is to be a neutral arbiter and to put facts into the public domain. The national coordinating body 
(RIVM) was seen as the only partner able to fill the role of fact checker in the national public domain. The 
Municipal Health Service may need supportive capacity, depending on competing demands.  

Promoting inter-sectoral collaboration and synergies 
between the authorities  

• 

• 

• 

• 

Conduct a preliminary, comprehensive stakeholder analysis of relevant inter-sectoral partners. Emerging 
zoonotic disease requires a repositioning of the typical (standardised) stakeholder engagement by 
coordinating authorities. These new stakeholders mean extra investment in coordination and decision 
making regarding the extent of engagement.  
Carefully and in a timely manner explain the public health decision-making process to all stakeholders 
involved in the implementation phase. Engagement of inter-sectoral community partners will encourage 
questions about the balancing of commercial and/or agricultural risk against human health risks. On the one 
hand, there is a rationale for keeping decision-making medically focused during coordination and response. 
On the other hand, this runs the risk of excluding inter-sectoral, professional stakeholders who could judge 
the appropriateness of health actions in other contexts, facilitate timely communication in other networks, 
develop understanding of the organisation of the emergency health response, and avoid counterproductive 
measures across sectors.  
Continuously invest in ministerial coordination and negotiation by building collaborative capacity, creating 
win-win scenarios, and benefitting from positive experience during previous responses. Coordination 
between different ministries is important for zoonoses. However, coordination is slow and difficult and inter-
sectoral responses have been varied and challenging - e.g. Q-fever in the Netherlands. 
Develop inter-sectoral workflow charts and support ‘One Health’ platform development. Unfamiliarity with 
different domains means that if people do not actually know each other they will not be encouraged to trust 
each other. Insight into the linkages between each other’s processes is helpful for partners to learn how 
their work is connected with that of ‘others’. The ‘One Health’ approach actively pursues such synergy, and 
is promising.  

Other important lessons learned that do not directly relate 
to synergies 

• 

• 

Use community brokers to reach vulnerable populations. Vulnerable populations (e.g. asylum seekers, 
hikers, foreign tourists, pet owners, scouting groups, schools, day-care, garden owners, or volunteers 
working with community partners) may include community members reached only through specific brokers 
in the network. With respect to volunteers, one suggestion is to involve accredited occupational health 
services to ensure that appropriate tick-borne disease information and preventive structures are available 
on an annual basis. 
Conduct post-incident evaluations. Efforts to conduct formal evaluations after a public health incident can 
ensure that institutional memories are sustained and that lessons learned are remembered in the longer 
term. Work with different authorities to share experiences and establish regular post-event evaluations. 

27 

 
 
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

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28 

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35. van Steenbergen JE, Roest HJ, Wijkmans CJ, van Duijnhoven Y, Vellema P, Stenvers O, et al. Q-koorts in Nederland: 2008 en 

verwachting voor 2009. Ned Tijdschr Geneeskd 2009;153:A370. 

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37. Rijksinstituut voor Volksgezondheid en Milieu. Afstemmingsoverleg TBE Stakeholderanalyse, 26 oktober 12.30-14.00 uur. 2016. 

38. Brandwagt D, Spit S, Sprong H, Hofhuis A, Stroo CJ, Gassner F, et al. Tekenencefalitis, een nieuwe ziekte in Nederland? 

Infectieziekten Bulletin 2017;28(4). 

39. So Strong. Landelijke bijeenkomst voor mensen met hardnekkige Lyme & co-infecties en hun naasten. 2018; Available at: 

https://www.sostrong.nl/ 

40. Glasbergen P. The green polder model: institutionalizing multi-stakeholder processes in strategic environmental decision-

making. Eur Environ 2002;12(6):303-315. 

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veranderende-sociaaleconomische-omgeving-.htm 

42. De Vos C, Swanenburg M, de Boer F, Vaandrager L, Hogeveen H, Bergevoet R, et al. Emerging zoonoses in relation to the 

changing socio-economic environment. 2016. 

43. Beaujean DJMA, Antonise-Kamp L, Belfroid E, van Steenbergen JE, Crutzen R. Evaluation of the 2014 Dutch smartphone app 

‘Tick Bite’: Desiree Beaujean. European Journal of Public Health 2015;25(suppl3):1. 

44.  van Velsen L, Beaujean DJ, Wentzel J, Van Steenbergen JE, van Gemert-Pijnen JE. Developing requirements for a mobile app 
to support citizens in dealing with ticks and tick bites via end-user profiling. Health Informatics J 2015 Mar;21(1):24-35. 

45.  Beaujean DJ, Gassner F, Wong A, Steenbergen JE, Crutzen R, Ruwaard D. Education on tick bite and Lyme borreliosis 

prevention, aimed at schoolchildren in the Netherlands: comparing the effects of an online educational video game versus a 
leaflet or no intervention. BMC Public Health 2016 Nov 16;16(1):1163-016-3811-5. 

46. European Centre for Disease Prevention and Control. Ebola emergency preparedness in EU Member States – Conclusions 

from peer-review visits to Belgium, Portugal and Romania. Stockholm: ECDC; 2015. Available at: 
https://ecdc.europa.eu/en/publications-data/ebola-emergency-preparedness-eu-member-states-conclusions-peer-review-visits 

47.  European Centre for Disease Prevention and Control. Preparedness planning for respiratory viruses in EU Member States – 

Three case studies on MERS preparedness in the EU. Stockholm: ECDC; 2015. Available at: 
https://ecdc.europa.eu/en/publications-data/preparedness-planning-respiratory-viruses-eu-member-states 

48. European Centre for Disease Prevention and Control. Case studies on preparedness planning for polio in Poland and Cyprus. 
Stockholm: ECDC; 2016. Available at: https://ecdc.europa.eu/en/publications-data/case-studies-preparedness-planning-polio-
poland-and-cyprus 

29 

 
 
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Annex1. Respondents 

Category 
National 

Type1 
KI 

Institute represented 
Ministry of Health, Welfare and 
Sport (VWS) 

Name 
Stephanie 
Wiessenhaan 

Professional title 
Coordinating policy advisor, Zoonoses 

National 

National 

National 

National 

National 

National 

National 

National 

National 

National 

Regional 

Regional 

Regional 

Regional  

Regional 

Regional 

Communiy 

Community 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

KI 

Community 

FGD 

Community 

FGD 

Community 

Community 

FGD 

FGD 

Community 

KI 

Community 

FGD 

Ministry of Health, Welfare and 
Sport (VWS) 
RIVM Communication 

Yvonne de Nas 

Kevin Kosterman 

Senior policy advisor, Infectious 
Diseases  
Communication advisor 

RIVM EPI 

RIVM EPI 

RIVM IDS 

RIVM LCI 

RIVM LCI 

RIVM LCI 

RIVM LCI 

RIVM Z&O 

Amsterdam Academic Medical 
Center (AMC) 
Municipal Health Service Twente 
(GGD Twente) 
Municipal Health Service Utrecht 
(GGD Region Utrecht) 
Municipal Health Service Utrecht 
(GGD Regio Utrecht) 
Agrarian Personnel Health 
Service (STIGAS) 
Wageningen University and 
Research Central Veterinary 
Institute 
Dutch Association of Lyme 
Patients (NVLP) 
Independent 

Association Het Edelhert & 
Dutch Wildlife Health Centre 
Dutch Tourist Camping Club 
(NTKC) 
Goois Nature Reserve 

Groenklus 

Landschapsbeheer Drenthe & 
FNV 
Municipality of Amersfoort 

Agnetha Hofhuis 

Infectious disease epidemiologist  

Kees van den 
Wijngaard 
Kristin Kremer 

Corien Swaan 

Dorothee Roβkamp 

Desiree Beaujean 

Hans Lobach 

Hein Sprong 

Joppe Hovius 

Karel Soethoudt 

Diederik Brandwagt 

Ans van Lier 

Mirjam de Groot 

Senior researcher 

Interim Head of the Department, 
Perinatal Screening and Bacterial 
Serology 
Head Department for Prevention and 
Control 
Senior policy advisor, Preparedness 

Head of Department, Guideline 
Development 
Head Regie & member of the Dutch 
Lyme Disease Expertise Centre 
Research coordinator & scientist 

Professor of Medicine, Internist, AMC 
Lyme Center 
Medical doctor, Senior consultant, 
Communicable Disease Control 
Junior consultant, Infectious Disease 
Control 
Senior consultant, Communicable 
Disease Control 
Prevention advisor, Green Sector 

Hendrik-Jan Roest 

Head of department, Bacteriology and 
Epidemiology 

Gert van Dijk 

Former Chair of Board 

Lizi Slok 

General practitioner 

Margriet Montizaan  Hunter, communication advisor, 
volunteer 
Head of Board 

Albert Fien 

Johan Griffioen 

Cattle and sheep farmer 

Jan Groot 

André Efftink 

Owner, Maintenance professional, 
Forester 
Tree and landscape specialist 

Marjolijn Hinkofer 

Advisor, Living Environment & Public 
Space 
Advisor, Living Environment & Public 
Space 
National Council Scouting and local 
scouting board member. Lyme patient 
Team leader, Utrecht region 

Forestry monitoring and ecological 
adviser 
Lyme patient representative 

Location coordinator 

Tamira de Pijper 

Location coordinator  

Community 

FGD 

Municipality of Amersfoort  

Aart van Egteren 

Community 

KI 

Scouting Netherlands 

Nadir Baali 

Community 

Community 

FGD 

FGD 

Community 

KI 

Community 

FGD 

Community 

FGD 

Forestry Service (SBB) 

Rein Zwaan 

Forestry Service Salland/Twente 

Ton Klomphaar 

Tickbite Patient Organisation 
(Tekenbeetziekte) 
Utrecht Natuurlijk City Garden 
Overvecht 
Utrecht Natuurlijk Koppelsteede 
Children's Farm and Park 

Diana 
Uitdenbogerd 
Rudi van Bokhoven 

1 KI = Key informant interview, FGD = Focus group discussion 

30 

 
 
TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Annex 2. Documents identified 

(for media documents, see Annex 8) 

Literature search was done using the keywords ‘Lyme’, ‘LB’, ‘TBE’, ‘Tick-borne Encephalitis’ in both Dutch and 
English using Google Scholar. A few documents were provided by the RIVM directly, and others indirectly through 
the website: https://www.rivm.nl/Onderwerpen/T/Tekenbeten_en_lyme and 
https://www.rivm.nl/Onderwerpen/T/Tekenencefalitis. 

Year 

Title 

Author 

AJ en LI. 

Albu et al.  

AMC, NVLP, 
Radboudumc,RIVM 
Beaujean 

Unknown 

2014 

2017 

2013 

Beaujean et al. 

2013 

Beaujean et al. 

2014 

Brandwagt et al.  

Crutzen 

De Graaf et al.  

2017 

2014 

2016 

De Graaf et al.  

2016 

De Groot 

de Jong & 
Wiessenhaan 
De Vos et al.  

2011 

2017 

Unknown 

Den Oudendammer 
& Broerse 
European 
Parliament 

Fonville et al.  

Gassner 

2017 

2013 

2013 

2017 

Gassner et al.  

2010 

Gassner, F. 

Harms et al.  

Heinz et al. 

Hira & Rockx 

2014 

2014 

2013 

2017 

Hofhuis & Pelt 

Unkown 

Hofhuis et al.  

2017 

Jahfari et al 

Kaaijk et al.  

2017 

2016 

Sociale kaart LCI preparedness. Versie 4: 25614. 
Vastgesteld in IBO dd. 161214WHO 
Annual epidemiological report 2014 – emerging and 
vector-borne diseases. 
Nederlands Lymeziekte-expertisecentrum: Beleidsplan 
2017-2020 
Study on public perceptions and protective behaviors 
regarding Lyme disease among the general public in 
the Netherlands 
Using Risk Group Profiles as a Lightweight Qualitative 
Approach for Intervention Development: An Example 
of Prevention of Tick Bites and Lyme Disease 
Wat weten, denken en vinden Nederlandse 
schoolkinderen van teken en lymeziekte? 
Tekenencefalitis, een nieuwe ziekte in Nederland? 

Source 

RIVM 

European Centre for Disease 
Prevention and Control 
DOI: 10.21945/Nederlands-
Lymeziekte-expertisecentrum 
BMC Public Health 225 

JMIR research protocols, 2(2) [e45] 

Infectieziekten Bulletin (25)9:255-257 

Infectieziekten Bulletin (28)4:116-120 

Preventive behaviours regarding tick bites 

BMJ ;348:g231 doi: 10.1136/bmj.g231 

First human case of tick-borne encephalitis virus infection acquired in the Netherlands, July 2016. 
Eurosurveillance, 21(33):pii=30318. 
First human case of tick-borne encephalitis virus 
infection acquired in the Netherlands, July 2016 
Teken, tekenbeten en de ziekte van Lyme bij 
werkenden in de groene sector 
Beleidshandboek crisisbesluitvorming zoönose 

Infectieziekten Bulletin (28)4:113-115 

Infectieziekten Bulletin (22)2:58-60 

Eurosurveillance,21(33):pii=30318 

Emerging zoonoses in relation to the changing socio-
economic environment 
Lyme disease in the Dutch policy context: patient 
consultation in government research agenda setting 
DECISION No 1082/2013/EU OF THE EUROPEAN 
PARLIAMENT AND OF THE COUNCIL of 22 October 
2013 on serious cross-border threats to health and 
repealing Decision No 2119/98/EC 
Blootstelling aan Borrelia miyamotoi door tekenbeten 

Overview communication tools, work-groups, 
stakeholders and literature in the field of tick bites and 
Lyme borreliosis in the Netherlands 
Geographic and temporal variations in population 
dynamics of Ixodes ricinus and associated borrelia 
infections in The Netherlands.  
Vraag uit de praktijk: Tekenweetjes 

Tekenradar.nl, een webplatform over tekenbeten en 
de ziekte van Lyme 
Vaccination and Tick-borne Encephalitis, Central 
Europe 
Human Tick-Borne Encephalitis, the Netherlands 

Inventarisatie van de haalbaarheid en wenselijkheid 
van een meldingsplicht voor Lyme-borreliose 
Tekenencefalitis in Nederland: een studie naar 
blootstelling aan tekenencefalitis (TBE) virus onder 
mensen met een beroepsmatig hoog risico op 
tekenbeten in Nederland 
Tick-Borne Encephalitis Virus in Ticks and Roe Deer, 
the Netherlands 
Vaccineren tegen de ziekte van Lyme: Hoe ver zijn 
we? 

Wageningen University & Research 

Science and Public Policy, 1–14 

Official Journal of the European Union 
L 293/1 

Infectieziekten Bulletin (24)10:314-317 

RIVM 

Vector-Borne Zoonotic Dis, 11:523–
532. 

Infectieziekten Bulletin (25)4:119-120 

Infectieziekten Bulletin (25)7:204-206 

Emerging Infectious Diseases 
19(1):69-76 
Emerging Infectious Diseases 
23(1):169 
RIVM CIb 

RIVM CIb 

Emerging Infectious Diseases, 23(6), 
1028-1030 
Infectieziekten Bulletin (27)7:198-201 

31 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Author 

Kuiper et al.  

Maat & Konings 

Medlock et al.  

Mulder et al. 

Ostfeld et al. 

Randolph 

Reusken 

RIVM 

RIVM 

RIVM 

RIVM 

RIVM 

Sedda et al.  

Year 

1991 

2010 

2013 

2013 

2015 

2010 

2011 

2016 

2014 

2013 

2010 

2014 

2014 

Sprong & Braks 

2016 

Sprong et al.  

Stanek & Strle 

Van den Berg 

Van den Wijngaard 
et al.  
Van der Giesen & 
Kramer 
Van der Poel 

2011 

2008 

2012 

2006 

2016 

2005 

Van Hoeven et al.  

2013 

Van Velsen et al.  

2012 

Van Velsen et al.  

2015 

Weststrate et al. 

2017 

Wiessing et al.  

1991 

Title 

Source 

Lyme borreliosis in Dutch forestry workers 

Journal of Infection (I99I) z3, 279-286 

Teek it or leave it? Onderzoek van GGD West-Brabant 
naar preventieve maatregelen tegen tekenbeten 
Driving forces for changes in geographical distribution 
of Ixodes ricinus ticks in Europe 
High Risk of Tick Bites in Dutch Gardens 

Climate change and Ixodes tick-borne diseases of 
humans 
Human activities predominate in determining changing 
incidence of tick-borne encephalitis in Europe 
Case report: Tick-borne encephalitis in two Dutch 
travellers returning from Austria, Netherlands, July and 
August 2011 
Afstemmingsoverleg TBE Stakeholderanalyse, 26 
oktober 2016 12.30-14.00 uur 
Generiek draaiboek infectieziektebestrijding 

Lymeziekte Richtlijn 

Tekenencefalitis Richtlijn 

Infectieziekten Bulletin (21)7:221-223 

Parasites & Vectors 6:1 

Vector-Born and Zoonotic Diseases 
13(2) 
Phil. Trans. R. Soc. B 370:20140051 

Eurosurveillance, 15(27):pii=19606 

Eurosurveillance, 16(44):pii=20003 

RIVM-LCI 

RIVM 

RIVM LCI 

RIVM LCI 

Voorlichtingscampagne RIVM over teken en lyme gaat 
weer van start 
Risk assessment of vector-borne diseases for public 
health governance 
Introduction: choosing a One Health approach for the 
control of Lyme borreliosis 
Tekenoverdraagbare aandoeningen: meer (dan) Lyme? 

Infectieziekten Bulletin (25)3:88 

Public Health 128:1049-1058 

Ecology and prevention of Lyme 
borreliosis (Book) 
Infectieziekten Bulletin (22)2:56-57 

Lyme Disease-European Perspective 

Infect Dis Clin N Am 22:327–339 

Projectverslag Risico op zoönosen in de provincie 
Utrecht. Een samenwerkingsproject met ketenpartners. 
Is tickborne encefalitis (TBE) een dreiging voor 
Nederland? 
Signaleringsoverleg Zoönosen viert vijfjarig jubileum 

Attempt to Detect Evidence for Tick-Borne Encephalitis 
Virus in Ticks and Mammalian Wildlife in the 
Netherlands 
Kennis over teken en Lyme op basisscholen 
toegenomen, maar screening kan beter 
Via risicoprofielen naar preventie op maat: teken en de 
ziekte van Lyme 
Developing requirements for a mobile app to support 
citizens in dealing with ticks and tick bites via end-user 
profiling  
Increasing evidence of tick-borne encephalitis (TBE) 
virus transmission, the Netherlands, June 2016 
Lyme-Borreliose by uitvoerend personeel van 
staatsbosbeheer en aandachtspunten voor 
epidemiologisch vervolgondezoek 

GGD-Midden Nederland 

Infectieziekten Bulletin (17)12:417-419 

Tijdschrift voor Diergeneeskunde 6:48-
49 
Vector-Borne And Zoonotic Diseases, 
5(1) 

Infectieziekten Bulletin (24)10:328-329 

Infectieziekten Bulletin (23)9:306-311 

Health Informatics Journal 21(1) 24–
35 

Eurosurveillance 
2017;22(11):pii=30482 
RIVM 

32 

 
 
TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Annex 3. Interview and focus group 
discussion questions 

Two draft sets of questions were produced: one for interviews with experts, and one for focus group discussions with 
community representatives; many questions are the same for both groups, allowing us to examine given issues from 
these different perspectives. The questions had only minor differences in emphasis and wording. The questions were 
shared with the Dutch focal point for input and further discussion. The institutional versions appear below. 

Part 1. Mapping the different stakeholders 

1.  Please tell us how you and the institution you work for have been or are involved with TBE/lyme borreliosis. 
2.  Could you map out on a piece of paper the different stakeholders or groups that have been or are involved with 
preparing for and/or responding to TBE/lyme borreliosis. Which of these would you define as coming from the 
community, and which would you define as ‘authorities’? Do you think there are any stakeholders – institutional 
or from the community – who are missing from this map who should be included in order to ensure a better 
response?  

Part 2. Issues arising during each of the three phases of the 
public health event 

Anticipation phase (prior to the event) 

3.  To what extent were there any public health preparedness exercises, consultations, or training activities 

involving both the community and the authorities prior to this case? Please describe these. Do you consider 
these activities to have been sufficient? If not, what could have been done in addition? 

4.  In general, do you think that the community trusted the public health & scientific authorities in this area prior 

to the event? Had there been any specific events (such as other disease outbreaks) that promoted or 
undermined trust? Details. 

Response phase (during the event) 

5.  Were there sufficient numbers of dedicated professional staff in the area, able to respond to the case? Were 

there any problems, for example with funding, that may have limited the response? 

6.  Was there any official guidance for the authorities on how to engage with the community in this case(s)? What 

form did this guidance take? 

7.  Were the key actors in the community clearly identified and available when the case(s) first appeared? To what 

extent was there clarity about who was expected to do what?  

8.  What were people’s sources of information about the event (i.e. press and social media etc.)? How informative, 
coherent and consistent were these sources of information? Were there any issues that you think people felt 
they needed to know more about? 

9.  How was the communication and coordination between the community and the authorities during the response 
to this event [i.e. shared/democratic/top-down?] Were there any aspects that could have been improved? 
10. To what extent did different parts of these community trust and cooperate with each other during the response 

to this event? Examples? 

11. Were there any groups in the community who, for any reason, were excluded from the response? Details.  
12. Were there any hard-to-reach or vulnerable groups? What efforts, if any, were made to reach out to them, by 

whom, and what lessons could be learned from this?  

Recovery phase (after the event/outbreak – or, in the case of 
endemic, seasonal lyme borreliosis, after a season) 

13. Was there any sort of post-case review of the event, including with reference to community-institutional 

collaboration? If so, what form did it take, who was involved, and what was the outcome?  

14. How much awareness do you think there currently is in the community about this event? Do you think that 

lessons have been learned by the community regarding prevention and response practices for future events of 
this nature? 

33 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Part 3. Overview 

15. Overall, how would you describe (i) the community response and (ii) the official response to the event? Were 

you satisfied, or do you think some aspects could have been improved? 

16. In general, how do you feel the community and the authorities collaborated during this event? What would you 

say was the most successful aspect of any collaboration? What were the main challenges faced in the 
collaboration process, and what efforts, if any, were made to overcome these? 

17. What do you think are the main lessons learned from this event, in terms of community-institutional 

collaboration and preparing for future public health emergencies or events? 

18. Is there anything else you would like to add? 

34 

 
 
TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Annex 4. Ethical consent form 

There were two versions of the informed consent form, one for the interviews (with officials from the health/non-
health sectors), and one for the focus groups (with the community). They differed slightly in wording. Both were 
translated into Dutch by a native speaker. 

1. Officials from the health/non-health sectors – Informed 
consent form 

Study title: Enablers and barriers for community and institutional public health emergency preparedness synergies 

As part of the process of increasing inter-sectoral preparedness for serious cross-border public health threats, the European 
Centre for Disease Prevention and Control (ECDC) has initiated a case study project to investigate the synergies between 
communities affected by serious public health threats and the institutions (both health- and non-health-related) that are 
mandated to prepare for and respond to them.  

Two EU countries have been selected for inclusion in the case study, in agreement with ECDC and the countries concerned: 
Spain and the Netherlands. Both of these countries are increasingly affected by serious tick-borne diseases, due to climate 
and other environmental changes. These diseases will be the focus of the work, which will seek to document the 
perspectives and experiences of key actors with respect to them in (i) the health sector, (ii) relevant non-health sectors, and 
(iii) in the affected communities. 

You have been identified as a representative of one of the official institutional informant categories that are considered as 
being critical in preventing, preparing for and/or responding to a tick-borne disease outbreak. In addition to the health sector, 
our official institutional informants come from agriculture, animal health, tourism, and forestry. 

Your participation in the interview is entirely voluntary, and if you agree to take part, you are free to change your mind or 
withdraw at any time without consequences. If you agree to take part in an interview, any processing of your personal data 
will comply with Regulation 45/200120 and Swedish national law. ECDC is the data controller of this processing operation, 
and the data is collected and stored by the University of Umeå on its behalf, in its role as processor of the data. The 
interview will be conducted by two social scientists from Umeå University in Sweden, who are working with ECDC on the 
project. One member of the interview team will conduct the interview with you, while the other will take notes (either by 
hand, or on a laptop computer). We will ask if you are comfortable for us to record the interview, so that we can 
subsequently check and confirm our understanding of what was said. At no stage will anybody outside the interview team 
have access to the recording, and it will be deleted from our computer/s once the analysis of the interview is complete. The 
recording of your interview will be copied onto a memory stick and stored in a locked and secure safe on the University 
premises. After 5 years, the file will be permanently deleted. If you prefer for us not to record the interview, of course we 
will fully respect your wish, and we will rely instead on the notes taken during the interview.  

With your agreement, we may want to quote some of what you say in the report that we will be writing, but we will do so in 
a way that ensures that it cannot be ascribed to you. Also, with your agreement, we may want to include your name and 
institutional affiliation in an Annex that lists the informants who have contributed to this case study project. 

As a data subject, you have the right of access and rectification of your personal data. Feel free to ask any questions you 
may have about the interview or the processing of your personal data. If you have questions after the interview is over, 
please contact Svetla Tsolova at ECDC (svetla.tsolova@ecdc.europa.eu).  

Please check ‘yes’ or ‘no’ by each of the following statements, sign and date the document in the space provided below.  

Yes 

No 

I agree to having the interview recorded (note that if you prefer for us not to record the interview, of 
course we will fully respect your wish, and we will rely instead on the notes taken during the interview). 
I agree to having my words used as quotes in the final report, and I understand that my words will be 
anonymized so that it will not be possible to ascribe any of my comments to me.  
I agree to having my name and institution included in an Annex at the end of the final report that lists 
the informants who have contributed to this case study project. 

Signature: ________________________________________________________________________ 

Name (in CAPITALS): ________________________________________________________________ 

Date: ___________________________________________________________ 

20 Regulation (EC) No 45/2001 of the European Parliament and of the Council of 18 December 2000 on the protection of 
individuals with regard to the processing of personal data by the Community institutions and bodies and on the free movement of 
such data 

35 

 
 
 
 
 
 
 
 
 
 
 
                                                                    
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Annex 5. List of codes and thematic 
classification 

Code 
AID (& RIVM lab) 

ARBO 

Theme classification 
Synergies authority - community Lyme 

Synergies authority - community Lyme 

Bias in patient representation 

Challenges 

Burgerinititatief 

Camping association 

Camping initiative 

Synergies authority - community Lyme 

Synergies authority - community Lyme 

Community initiative 

Citizenscience – Tekenradar 

Synergies authority - community TBE &lyme 

Clinical focus 

Communication 

Challenges 

Challenges 

Communication and information 

Communication and Media 

Communication with patients 

Aspirations for synergy in future 

Cross border 

Synergies inter-sectoral 

Dealing with different stakeholder interests 

Challenges 

Definition health in environment law 

Diagnostic uncertainty 

Dissemination 

Distrust 

Division responsibilities health in nature 

Exclusion nature partners in coordination 

Funding 

Challenges 

Challenges 

Challenges 

Challenges 

Challenges 

Challenges 

Challenges 

Gezondheidsdienst voor Dieren 

Synergies authority - community TBE 

GGD & Nature 

Green cloud 

Guidelines 

Hard to reach & Vulnerable groups 

Hunters 

ILADS 

Synergies inter-sectoral 

Challenges 

Guidelines 

Challenges 

Synergies authority - community TBE 

Synergy community to private 

Lack of post-case evaluation 

Challenges 

Landelijke Groene Lyme Werkgroep 

Synergies authority - community Lyme 

Lyme & generic infrastructure 

Relation TBE and lyme infrastructure 

Lyme Disease Awareness Month 

Synergies authority - community Lyme 

Mandated role of authority to inform 

Communication and Media 

Media attention 

Media documentaries 

Media training 

Communication and Media 

Communication and Media 

Communication and Media 

Multidisciplinaire guideline Arbeid & Lyme 

Guidelines 

Nature owners now 

Nature owners future 

Nature partners 

Synergies authority - community TBE &lyme 

Aspirations for synergy in future 

Synergies inter-sectoral 

Nederlands Lyme Expertise Centrum 

Synergies authority - community Lyme 

Nederlandse Verening voor Lymepatienten 

Synergies authority - community Lyme 

Occupational sector & VWS 

One Health 

Synergies inter-sectoral 

Synergies inter-sectoral 

Ontwikkelings Maatschappij Flevoland 

Synergy community to private 

Patient organisation relationship to TBE 

Relation TBE and lyme infrastructure 

36 

TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Code 
Perceived misrecognition lyme 

Theme classification 
Challenges 

PIN (online course lyme for GP) 

Aspirations for synergy in future 

Power of patient organisation 

Synergies authority - community Lyme 

Prevention versus response 

Previous models and analogies 

Privatisation of Nature Management 

Challenges 

Challenges 

Challenges 

School 

Synergies authority - community Lyme 

Schools & Scouting (children) 

Aspirations for synergy in future 

Scouting initiative 

Shooting the messenger 

Signaleringsoverleg (SOZ) 

Social media monitoring 

Spatial misalignment 

Community initiative 

Synergies inter-sectoral 

Synergies authority - community TBE 

Communication and Media 

Challenges 

Stakeholder analysis research RIVM 

Synergies authority - community Lyme 

Surveillance complacency 

Challenges 

TBE – outbreak 

Teek pak 'm beet 

Thuisarts.nl 

Synergies inter-sectoral 

Synergies authority - community Lyme 

Communication and Media 

Vaccination research and ecology 

Aspirations for synergy in future 

Veterinary & health - win 

Week van de Teek 

Synergies authority - community TBE &lyme 

Synergies authority - community Lyme 

yearly knowledge exchange day 

Synergies authority - community TBE &lyme 

ZonMw 

Synergies authority - community Lyme 

Zorgplicht (Duty to care) 

Challenges 

37 

 
 
 
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Annex 6. Social map of RIVM-LCI 
preparedness (source RIVM-LCI) 

38 

 
 
 
TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Annex 7. Stakeholder analysis TBE 

Stakeholder 

What coordination needs from 
stakeholder 

What stakeholders needs from 
coordination 

Risk groups 

Recreational actors 
Tourists 
Military 
Forestry, green and 
fieldworkers*  

Percentage of people with tick bites and 
how many of these TBE to provide 
correct measures & advise 
Information about behaviour and basic 
knowledge about prevention for 
improvement 
Information collection regarding actual 
use of prevention measures (STIGAS and 
Forestry Service) 

Practical prevention guide 
Practical information about when to 
consult a general practitioner 
Vaccination advice 
Risk assessment in relation to 
proportionality of measure 

Scouting 

Medical care providers/medical stakeholders 

Information about patients 
(surveys/signals) 
More public communication, both active 
and passive 
Advise municipalities of TBE risks 

Disseminate information to risk groups 
(thuisarts.nl, screens, etc.) 
Alertness among people without 
frightening them 
Recognize and signal TBE as long as it is 
not mandatory to inform RIVM 
Offer surveys to patients 

Inform animal owners of animals who are 
outside. 
Collect ticks for research 
Provide access to specialists 
Notifications 

Offer surveys for patients 
Ready-to-go public communication 
messages 
Create more alertness 

Ready-to-go information on disease and 
diagnosis 
Create more alertness 

Information about signalling and 
diagnostics TBE 
Offers (basic) information for 
contacts/families patient 
Guidelines in collaboration with 
professional associations 
Ready-to-go information for pet owners 
Information if animals can be off-
leash/free 
Low-threshold accessibility for colleagues 
Lot of contact with other clinicians and 
colleagues 

Municipal Health 
Services  

Hospitals 
General Practitioners 

Specialists 
(neurologists, 
infectious disease 
experts) 

Animal doctors 

Laboratories (medical 
microbiology) 

Pharmaceutical 
companies 
(vaccination) 
Agrarian Personnel 
Health Service 
(STIGAS) 
Military occupational 
health 

Government/politicians/media 

Ministry of Health, 
Wellbeing, Sport 
(Social) media 

Provision of proportionally correct 
information to target audience 

Ready-made public information 

Practical information on when to consult 
a physician 

39 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Stakeholder 

What coordination needs from 
stakeholder 

What stakeholders needs from 
coordination 

Knowledge institutes/associations 

National Institute for 
Public Health and 
Environment (RIVM) 
Dutch Wildlife Health 
Centre (DWHC) 
Naturemanagers, 
owners, and 
associations 
DLO (Alterra) 
Wageningen University 
Research Centre 
Dutch Association of 
Lyme Patients (NVLP) 

Tickbite Patient 
Organisation 
(Tekenbeetziekte) 
Producers of tick 
prevention materials 
(Rovince, vaccines) 
Association Forest & 
Nature Owners 
(VBNE)*  
Professional Journals 

Sallandse Region 
(nature conservation, 
private property 
owners) 

Utrecht Landscape 
Royal Dutch Hunting 
Association (KNJV), 
farmers and property 
owners 

Regional zoonotic 
networks 
Network of green 
agencies 

Source: RIVM-LCI 

• 

• 

Signals, polling of emotions and 
frequently asked questions.  
Provision of correct information to 
patients 

•  Well supported information 

(specialized information relative to 
the general public) 

• 

• 

• 
• 
• 

Provision of proportionally correct 
information to target audience 
Collaboration in research on ticks 

Same as Sallandse Region 
Collaboration in research 
Building and keeping trust 

Informing members,  

• 
•  Monitoring if prevention measures 
are being followed and how many 
people are bitten by ticks.  

• 

• 

• 

• 
• 

• 
• 

• 

• 
• 

Preliminary information provision 
(before media0 
Ready-made information for public 
and staff 
Engagement throughout entire 
process and offer of privilege to 
receive information first 
Same as Sallandse Region 
Early signalling to be able to 
anticipate 
Ready-made information 
Applicable instructions for research 
sampling 
Feedback on results 

Ready-made public information 
Practical information when to 
consult a physician 

* Multiple organisations: Forestry service, nature conservation organisation (Natuurmonumenten), Federation of 
private properties, 12Landscapes, Ministry of Defence. 

40 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

Annex 8. Summary of media analysis 
Before TBE human case 

Volkskrant 11-5-2010 Ticks, lyme TBE very short 

Dokterdokter.nl 5-4-2016: Ticks, TBE en Frühsommer-meningoencefalitis (FSME), information folder Tekenbeet of 
GGD. Symptoms, when tot he GP? Prevention, vaccination 

De Utrechts heuvelrug 26-6-2016 : Information about ticks and lyme 

After TBE human case 

Linda Nieuws 21-7-2016: referred to RIVM, factual and short and mentioned the RIVM. Emphasis was placed upon the 
low risk to get encephalitis from ticks. The RIVM research during which the virus was found with deer in de Sallandse 
Heuvelrug is briefly mentioned. 

Metronieuws 21-7-2016: emphasis on first human TBE case in Netherlands reported by RIVM. Patient was bitten by tick 
during walk at the Utrechtse Heuvelrug. Symptoms are described and the small chance of encephalitis. Also Brief 
mentioning of Lyme 

NU.nl 21-7-2016: First patient ill in NL. Reported by RIVM. Comparison with Lyme: decreased risk of becoming ill. 
Symptoms mentioned. 

Utrecht Nieuws 21-7-2016: Virus exist in North, Middle and East Europe, amongst others in Germany and Austria. 

Medisch Contact 1-7-2017: first TBEV in Sallandse Heuvelrug, no patients yet. RIVM, incubation time, symptoms, 
possibility of encephalitis, origin of the virus. No reason according to RIVM for vaccination 

Blik op nieuws 21-7-2016: First human TBE patient, RIVM reference, origin, symptoms, GPs need to be alert, prevention 
for tick bites, TBE in ticks 

Later 
Telegraaf (Sterkliniek Dierenartsen Den Helder): New tick-borne virus. Comparison with Lyme: higher risk of getting ill. 
Reference to RIVM. Be alert for ticks. Symptoms 

WUR 28-7-2016: Research to check animals for TBE. TBE origin, symptoms, prevention against ticks, GPs need to be 
alert, link to RIVM. 

NOS 14-8-2016: RIVM, one human case of TBE, tick, prevention, origin, questions for RIVM, research by RIVM and CVI 
(central veterinary institute and WUR (Wageningen). Vaccination exist, but only in certain countries and areas needed. Risk 
of Lyme versus risk for TBE: Forestry service no questions, hikers aware of ticks already. Tick prevention, referral to RIVM. 

NRC 31-3-2017: Lyme, TBE, ticks, comparison risks, first two human cases in NL, RIVM research with AMC, preventive 
measures for hikers and land owners (use of signs, mowing the grass besides the paths), symptoms, complaints go to GP. 

AD 30-6-2017: Risk compared to Lyme, reference to RIVM. TBEV signalled in Sallandse Heuvelrug detected in deer. No 
human cases yet. Most people infected with TBE no symptoms, some people do. Discussion of the readers underneath 
about GPs not taking tick bites and Lyme serious 

Vacciweb: TBE, risk, risk people (hikers, scouting, campers, ticks, prevention, vaccination, origin location of TBE 

VBNE: TBE in humans or (FSME). Origin, prevention of ticks, reference to RIVM and research in deer, emphasis on those 
working in green sector, comparison TBE and Lyme, reference to website RIVM 

Nieuws.nl: Week van de teek, ticks, season, Lyme and TBE2 human TBE cases. Gelerse valley Lyme, TBE, prevention, 
origin, reference to RIVM 

MMI laboratorium: reference to RIVM and labinf@ct: TBE in humans, origin, diagnositcs, symptoms.  

Vaccination information on travel website: information about TBE 

GGD: Vaccination website, reference to RIVM and information film (about ticks, how you get it, symptoms, how you 
remove it, tick bite, report where in your body and when tick has bitten you and keep an eye on it for three months go to 
GP with complaints) information about ticks prevention, where TBE is from, raw milk 

GGD: tick prevention 

Lyme related articles in popular fora 

Linda Walking for Lyme in 19-2-2016. About marathon for Lyme funding and chronic Lyme treatment 

Scouting forum: About petition for antibiotics for Lyme. Debate: considered panic making or fight against the GP who 
does not take it seriously.  

Website scouting: Prevention of tick, information about Lyme 

41 

 
Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

TECHNICAL REPORT 

Annex 9. Name translation of organisations 
in participatory stakeholder mapping 

English translation 

Dutch original name (abbreviation) 

Academische Medische Centra 
Stichting Gezondheidszorg Agrarische Sectoren (STIGAS) 
Amsterdams Multidisciplinair Lyme borreliose Centrum 
Centrum voor Experimentele en Moleculaire Geneeskunde (CEMM) 
Amsterdam Medisch Centrum (AMC) 
Gezondheidsdienst voor Dieren (GD) 
Nederlands Huisartsen Genootschap (NHG) 

Vereniging Samenwerkende Kinderboerderijen Nederland (vSKBN) 
Huisartsen vereniging 
Algemene Vereniging Inlands Hout (AVIH) 
Landelijke Huisartsen Vereniging (LHV) 
Asielzoekers 
Vrijwillige Kinderboerderijen 
Christelijk Nationaal Vakverbond (CNV) 
Utrecht Natuurlijk Stadsboerderij Koppelsteede 
Utrecht Natuurlijk Stadstuin Overvecht 
Defensie 
Nederlandse Vereniging van Lyme Patienten (NVLP) 
Nederlandse Voedsel- en Warenautoriteit (NVWA) 
Nederlandse Toeristen Kampeer Club (NTKC) 
Nederlandse Jachthonden Vereniging 
Nederlands Lymeziekte-expertisecentrum (NLE) 
Dutch Wildlife Health Centre (DWHC) 
Verzorgingstehuis 
Europese Unie Health Security Committee (EU HSC) 
Huisartsenposten (HAP) 
Huisartsen 
Federatie Nederlandse Vakvereniging Agrarisch (FNV) 
EHBO 
Ontwikkelingsmaatschappij Flevoland 
Staatsbosbeheer (SBB) 
Moestuinierders 
Gelders Landschap 

Academic Medical Centers 
Agrarian Personnel Health Service 
AMC Lyme Research Centre 
AMC Molecular Medicine 
Amsterdam Med Center 
Animal Health Laboratory Service 
Association of Dutch Family 
Medicine 
Association Forest & Nature Owners  Vereniging van Bos- en Natuurterreineigenaren (VBNE) 
Association of Children's Farm 
Association of Family Medicine 
Association of Forestry 
Association of Medical Practitioners 
Asylum Seekers 
Children's Farms 
Christian Union 
City Farm Utrecht (Koppelsteede) 
City Garden Utrecht (Overvecht) 
Defense Department 
Dutch Association of Lyme Patients 
Dutch Food Safety Administration 
Dutch Green Tourism Club 
Dutch Hunting Dog Association 
Dutch Lyme Expertise Centre 
Dutch Wildlife Health Centre 
Elderly Care Facitity 
EU Health Security Committee 
Family Medicine Posts 
Family Medicine Practitioners 
Federal Union 
First Aid Professionals 
Flevoland Development Association 
Forestry Service 
Gardeners 
Gelders Landscape 
National Green Lyme Working Group  Groene Lyme Werk Groep (GLWG) 
Healthcare Network Middle Region 
Herders Association 
Higher Prof Education Dronten 
Hospital 
Hunting Organisation Edelhert 
Hunting Organisation Reewild 
Knowledge Centre Occupational 
Health 
Landscape Organisation 
Legal representatives (Beer) 
Med Emergency Mgmt National 
Med Emergency Mgmt Regio 
Medical Government Council 
Medical Microbiology Laboratories 
Medical Practitioners (first line) 
Ministry Agricultre, Fisheries, Nature  Ministerie van Landbouw Natuur Visserij (LNV) 
Ministry of Economic Affairs 
Ministry of Health, Wellbeing, Sport  Ministerie van Volksgezondheid, Welzijn en Sport (VWS) 

Landschappen Nederland 
Beer Advocaten 
GGD GHOR Nederland 
Geneeskundige Hulpverleningsorganisatie in de regio (GHOR) 
Gezondheidsraad 
Medisch Microbiologisch Laboratoria (MML) 
Eerstelijnszorg 

Ambulante Zorggroep Midden-Nederland (AZMN) 
Het Schaap 
Aeres Hogeschool Dronten 
Regionaal Ziekenhuis 
Vereniging het Edelhert 
Vereniging het Reewild 
Kenniscentrum Infectieziekten en arbeid (KIZA) 

Ministerie van Economische Zaken 

42 

TECHNICAL REPORT 

Synergies in community and institutional public health emergency preparedness for tick-borne diseases in the Netherlands 

English translation 

Dutch original name (abbreviation) 

Ministry of Infrastructure & Water  
Ministry Social Issues & 
Employment 
Municipal Health Service 
Municipality 
Nat. Park Utrecht Heuvelrug 
National Science Foundation Lyme 

Nature Conservation Organisation 
(Dutch Society for Nature 
Conservation) 
Neighborhood 
NWVA Centre Monitoring Vectors 
Occupational Health Collaboration 

Ministerie van Infrastructuur en Waterstaat (IenW) 
Ministerie van Sociale Zaken en Werkgelegenheid (SZW) 

Gemeentelijke Gezondheidsdienst (GGD) 
Gemeente 
Nationale Park Utrechtse Heuvelrug (NPUH) 
Nederlandse organisatie voor gezondheidsonderzoek en zorginnovatie 
Programma Lyme (ZonMw) 
Natuurmonumenten 

Buurtbewoners 
Centrum Monitoring Vectoren (CMV) 
Samenwerkende Artsen- en Adviesorganisaties in de Gezondheidszorg 
(SAAG) 
ARBO Bedrijfsarts 
Arbo Unie 

Occupational Health Practitioner 
Occupational Health Union (Arbo 
Unie) 
Parliament 
Patients 
Pharmacies 
Private Biological Consultant 
(Gassner) 
Private Laboratory (Innatos) 
Private Nature Owners 
Provence 
Provincial Landscape Organisation 
Radboud University Medical Centre 
Rangers Middle Region 
Regional Fauna Management Unit 
Regional Game Management Unit 
Regional Medical Practitioners Group  Regionale Kringen 
Regional Nature Conservation Gooi 
RIVM-Centre Infection Control 
RIVM-CIb Centre for Diagnostics 
RIVM-CIB Communication 
RIVM-CIb Coordination Outbreak 
Control 
RIVM-CIb Epidemiology 
RIVM-CIb Zoonotic & microbiology 
Royal Dutch Hunting Association 
Royal Landscapes 
Schools 
Scouting 
Scouting Local 
Societal Reintegration Projects 
Tickbite Patient Organisation 
Unemployment Services 
University of Utrecht 
University of Wageningen 
Utrecht Landscape Organisation 
Utrecht Platform OneHealth 
Veterinarians 
Veterinary Medicine, Utrecht Univ. 

vSKBN Health Working Group 
Women's Groups 
WUR Bioveterinary Research 
Youth Services 

Parlement 
Patienten 
Apotheek 
Gassner Biologisch Risico Advies 

Innatos Laboratories BV 
Natuureigenaren 
Provincie 
Stichting Noord-Hollands Landschap 
Radboudumc 
Buitengewoon Opsporingsambtenaren (BOA) Recreatie Midden-Nederland 
Faunabeheereenheden 
Wildbeheereenheden 

Stichting Goois Natuurreservaat 
RIVM Centrum Infectiebestrijding (CIb) 
RIVM-CIb Infectieziekteonderzoek, Diagnostiek en Screening (IDS) 
RIVM-CIB Communicatie 
RIVM-CIb Landelijk Coordinatiecentrum Infectieziektebestrijding (LCI) 

RIVM-CIb Epidemiologie en Surveillance van Infectieziekten (Epi) 
RIVM-CIb Zoonosen en Omgevingsmicrobiologie 
Koninklijke Nederlandse Jagersvereniging (KNJ) 
Kroondomeinen 
Scholen 
Scouting Nederland 
Scouting Steenbergen 
Reintegratieproject 
Stichting Tekenbeetziekten 
Uitvoeringsinstituut Werknemersverzekeringen (UWV) 
Universiteit Utrecht (UU) 
Wageningen Universiteit and Research(WUR) 
Utrechts landschap 
Kennisnetwerk Zoönosen Midden Nederland 
Dierenartsen 
Faculteit Diergeneeskunde Universiteit Utrecht, Institute for Risk 
Assessment (IRAS) 
vSKBN Landelijke werkgroep gezondheid 
Vrouwengroepen 
Wageningen Bioveterinary Research (WBVR) 
Jeudsgezondheidszorg (JGZ) 

43 

 
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ECDC  Independence  Policy,  ECDC  staff  members  shall  not,  in  the  performance  of  their  duties,  deal  with  a  matter  in  which,  directly  or 
indirectly,  they  have  any  personal  interest  such  as  to  impair  their  independence.  Declarations  of  interest  must  be  received  from  any 
prospective contractor(s) before any contract can be awarded.
www.ecdc.europa.eu/en/aboutus/transparency

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