Public Engagement

Lyme disease, transmitted by ticks, is an emerging disease on Scotland’s Uist islands. In response to a request from NHS Western Isles to help investigate high local rates of infection, staff from the School of Veterinary Medicine and IBAHCM worked with local public health, environmental, veterinary and community stakeholders to design and implement a collaborative research project. Insights from public consultation influenced the scope of the research, for example identifying gardens as an important source of tick bites in people. In turn, the research findings are helping this highly affected community to manage ticks and Lyme disease risk more effectively.

This project was also Joint winner of the Best Community or Public Engagement Initiative in the UofG Knowledge Exchange & Public Engagement Awards 2019.

NHS Western Isles

Uist Deer Management group (DMG)

Scottish Natural Heritage

A request from NHS Western Isles (NHS-WI) at a National Lyme Disease meeting in 2017 started our collaboration to investigate the high numbers of cases of Lyme Disease in the Uists. With the support of the Glasgow Knowledge Exchange fund we integrated public engagement and interactions with stakeholders as key components which inform our research activities. Since the beginning of the project and our first visit to the Uists, it was clear that the community was very engaged in issues relating to ticks and Lyme disease and that local knowledge would be very valuable in informing our research. Examples of this are local knowledge informing us about changes in tick distribution and patterns of deer movement over time and high levels of tick bites occurring in gardens. The support and trust of the community has been integral to the success of the project and sharing and discussing our research activities and findings is an important part of our research. We achieve this by regular teleconferences, visits to the Hebrides, public meetings and consultations and sharing updates through the local media. Our shared research goal is to provide an evidence base for the effective management of Lyme Disease by the community.

Our key research questions have been developed together with stakeholders representing a diverse range of community views and opinions. We work closely with the Uist deer management group (Uist DMG), an organisation which has representatives from the main landowners on the Uists including estates and crofters, as well as veterinary surgeons, general practitioners and government agencies including Scottish Natural Heritage and NHS-WI. The jointly developed research questions are:

a) What is the prevalence of Borrelia (the bacteria causing Lyme disease) in ticks and which strains are present in the Uists?

b) What are the environmental factors, including wildlife species, associated with infection risk?

c) In which areas are people exposed to ticks and Lyme disease and who is at the greatest risk?

Evaluation

We have included evaluations following stakeholder meetings to assess the effectiveness of these events. These have found that stakeholders find them very useful both as an update on research activities and as a way to share and discuss views on the problem of Lyme disease in the Uists (satisfaction over 90%). Further comments from stakeholders included the importance of sharing results with healthcare professionals at GP practices and that the informal environment made it easier to ask questions and allowed discussion.

Impact

The initial results from this community led research has generated impact by informing the Uist DMG plan for ticks and Lyme disease and by securing follow-on NERC funding.  Public health impacts have also resulted from sharing the findings in local and regional newspapers, Gaelic radio and BBC Alba to increase tick and Lyme disease awareness. The long-term goals of the project are to decrease tick exposure and cases of Lyme disease in the Uists through recommendations based on ecological research and understanding the factors associated with tick bites in humans.

From our public consultation, we found that the abundance of ticks in gardens was as high as in other habitats where ticks are commonly encountered. Exposure to ticks around and within the home were commonly reported. This was unexpected and together with frequent tick bites in gardens, are the first reports of such high peri-domestic tick exposure in the UK. Typically, exposure to ticks in the UK and Europe is more frequently considered to be a problem associated with certain occupations or recreational activities which lead people to spend increased time in habitats where ticks are present. That up to a third of tick bites occurred around homes has important public health implications in developing appropriate messaging to build awareness and in developing approaches to reduce this risk. 

Our findings from the ecological survey and public consultation are being prepared for publication with stakeholders as co-authors to highlight the risk of peri-domestic Lyme disease in the Hebrides. Significant elements from this work including maps of tick exposure from public consultation will be integrated with NHS-WI public educational initiatives to provide public health impact.

Community concerns expressed about tick-borne diseases in livestock led us to arrange a consultation with crofters. The consultation was started in 2018 and will be publicised again in 2019 to broaden the responses across the Outer Hebrides.  This consultation will underpin applications for research funding to further assess the burden of tick-borne disease in livestock and potential interventions.

In terms of lessons learned we became very aware of the need to manage expectations in relation to how quickly our research could inform management. Stakeholders understandably are looking at us for guidance in terms of how to address the problem right now but we don’t want to make recommendations prematurely without having the data and evidence to back them up. This is particularly important because we don’t want to lose the trust of some partners for whom our results might mean a need to make difficult management decisions While we are not sure we would have done anything differently knowing this it has been an important learning process.

The sustainability of the project has been ensured by securing funding for a NERC-CASE PhD studentship which is co-funded by SNH until 2022 (£89k). Through data collection and mathematical modelling approaches the PhD study will assess different management options proposed by the community, including reducing deer density and fencing to separate deer from livestock and crofts. Public engagement and stakeholder involvement will be integrated with future research to ensure that our activities remain focused on the key issues for the community and continue to provide positive impacts.

Caroline.Millins@glasgow.ac.uk

Roman.Biek@glasgow.ac.uk