Report from RIPL and HPRU on the Lyme disease research workshop

Image courtesy of RIPL: Researchers, health professionals and Lyme charity reps at the workshop in November

In November 2019, a two day workshop was held in Liverpool by the NIHR’s Health Protection Research Unit in Emerging and Zoonotic infections (HPRU EZI) to review the research that has taken place on tick-borne diseases in the last couple of years, and identify gaps in knowledge and areas of research for future focus.

The first day was attended by health professionals and public health experts with expertise in ticks and related diseases, and on the second day the workshop was opened up to include reps from Lyme disease charities and patient groups, who put forward their own research priorities. This was in part to see how well they align with priorities which have been identified by NICE (National Institute of Health & Care Excellence).

The workshop was structured to focus on three topics in tick-borne disease research:

• Tick ecology, surveillance and risk management
• Disease epidemiology, public health & behavioural science
• Diagnostics and clinical practice

On the day we attended, we heard updates directly from HPRU EZI, Health Protection Scotland, NHS Highlands, Public Health England, London School of Tropical Medicine and other tick-borne disease scientists.

All attendees then took part in an open discussion on the future of tick-borne disease research in the UK.

RIPL (Rare and Imported Pathogens Lab) have now issued the report from the workshop, which includes a summary of the research priorities discussed, the research gaps identified, and the agreed next steps in the process.

This report can be found here.

Access the PDF directly here.

Some of our highlights:

Key Knowledge Gap Areas

It was acknowledged at the workshop and in the report that although some progress has been made in research relating to the topic areas listed above, there are still a number of key knowledge gaps.

Suggestions for ways to combat these knowledge gaps were discussed by researchers/clinicians/scientists as follows:

  • Continuing to improve understanding of tick and host ecology is key to developing risk management strategies and effective preventative behaviours.
  • Robust epidemiological and seroprevalence data will be critical to convincing funding bodies and policy makers of the significance of TBDs (tick-borne diseases) as a public health issue in the UK.
  • Consistent clinical case definitions and measures of patient outcome are essential prerequisites that must be in place before any clinical studies can be designed and carried out and will require collaborative working between clinicians, patient groups and scientists.
  • Education of medical practitioners is a critical activity that needs to run in parallel with future research studies, while behavioural sciences approaches will be required to evaluate the effectiveness of any new prevention and awareness strategies.

Research Priorities

Professor Saul Faust, chair of the NICE Guideline Committee for Lyme disease, spoke about the research priorities within the Guideline and proposed that they should be considered in the following order of importance:

1 Seroprevalence of Lyme disease and other tick-borne diseases
2= Clinical epidemiology of UK Lyme disease
-incidence, presentations, outcome etc
2= Laboratory tests
4 Core clinical outcome set
5 Antimicrobial management

The EPPI-Centre (Evidence for Policy & Practice Information) reported that they saw four key evidence gaps – treatment, prevention, risks, costs. They also presented their research priorities which were as follows:

  1. UK policy options: maintain existing system; mandatory clinician reporting; clinician reporting for late or disseminated cases; clinician sentinel networks; clinician questionnaires.
  2. Better understanding of how to deal with negative impact of uncertainties surrounding Lyme disease diagnosis. Qualitative research including a range of UK patients and practitioners.
  3. Urgently need research on patient / clinician experiences of treatment.
  4. Limited evidence on prevention and methodologically weak. Need more evidence, better study designs and studies from UK.

The Lyme charities and advocacy groups all presented their priorities, with some common themes.

The Caudwell LymeCo research priorities (as presented by Rosie) were:

  1. Improvements to the current laboratory testing and approaches to diagnosis, in order to find a truly accurate test that determines initial infection, ongoing infection and re-infection.
  2. Clinical epidemiology of Lyme disease in the UK – a study to collect data on incidence, presenting clinical features, management and outcome of Lyme disease in community and hospital settings in the UK.
  3. Research into the seroprevalence of other tick-borne infections in those who have Lyme disease.
  4. Research into the most effective treatment options for patients at all stages of Lyme disease, particularly those with a long term/chronic infection.
  5. Risk factors and probability of transmission via other means: person to person sexually, congenitally or by breast feeding; organ donation; blood transfusion.

You can read all of the group’s priority areas, and HPRU’s reported progress in those research areas since 2017, in the full report.

Next steps

It was largely acknowledged among all attendees that in order for clinical trials to take place on improving diagnostics and treatment outcomes for patients, clinical case definitions of Lyme disease and measures of patient outcome would need to be agreed.

It was therefore suggested that a workshop be set up (subject to funding), to include a range of health professionals and infectious disease specialists, who would form an agreed set of symptoms and outcomes in Lyme patients that they study, which future research will use a standard measure in order to be objective, non-biased, and for all research to be set against the same markers. The result of this will be the “core clinical outcome set” that was listed within the NICE Guideline research recommendations. Public Health England are looking to try and organise the workshop, and there was discussion around patient organisations and Lyme charities being able to contribute to the process.

It was also agreed that there was a “clearly identified need for behavioural science studies, particularly to determine how public health messaging about Lyme disease and TBDs is received and enacted“. Regarding concerns that an increase in public awareness raising campaigns could offset the work the of government and local authorities in trying to promote the benefits of outdoor exercise an activity, it was suggested that a health economic assessment between the two concerns could give weight to a stronger public health message on Lyme.

Image credit: Haute Autorite de Sante

And although it’s not a specific research activity, the open discussions did stress the importance of and need for better education of health professionals and the public, and it was said that patient groups could assist with disseminating information to their followers from authorities.

However, there were no noted conclusions about who would take responsibility for the suggestions made on health economic assessments, improving public awareness campaigns and the better education of health professionals.

Our thoughts

As recognised in the report, the majority of research that’s taken place since 2017 has been in tick ecology, and whilst this is important in understanding the risks, density of disease in certain geographical areas, and how environmental factors play a part, it does not directly help the human suffering that is happening now, as a result of inaccurate test results or treatment protocols that don’t cure the symptoms.

This was reflected in the priorities that were presented by the Lyme charities and patient organisations, who speak to those people affected by the disease. Nearly all of these priorities related to diagnostics, therapies and better measurement of treatment outcomes.

Therefore, we are pleased that progress was made towards a workshop to agree a case definition and outcome measure, for which we know that initial work is being done. This should establish a foundation for good quality future research, which includes the diagnostic test project that we hope to be co-funding with the Department of Health & Social Care.

The sharing of the research priorities by patient organisations and Lyme charities did feel a little redundant, as the discussions that followed seemed those focused on will be those already identified by NICE.

However, we are grateful to have been invited to represent the charity, its supporters and the patients we speak to, and we feel that there is definitely a more open and collaborative approach coming from these key agencies. We would have liked some more concrete solutions to the other ‘next steps’, but we feel the workshop was overall, positive and productive.


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