Professor Loreto Carmona, advocacy chair for the European Alliance of Associations for Rheumatology (EULAR) discusses the use of international awareness days as a tool in the Brussels arena to help position key topics to political audiences...
International awareness days like World Arthritis Day, which takes place on 12 October each year, provide a focal point for international efforts to raise awareness of important social and political issues.
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Professor Loreto Carmona[/caption]
The specific aim of World Arthritis Day is to help raise awareness of all Rheumatic and Musculoskeletal Diseases (RMDs), not just arthritis. While the debilitating effects of these 200 inflammatory and mechanical diseases are little known, their impact is widely – and often invisibly – felt. It is estimated that over 100 million Europeans live with RMDs, affecting their mobility, ability to work, self-esteem, wider health and often life expectancy.
At their best, international awareness days can enable diverse organisations with shared interests to coordinate their resources into one themed international campaign. EULAR’s national member organisations can celebrate World Arthritis Day using a variety of approaches at the national levels, including hosted debates, participatory events, the launch of research papers, and other communications activities.
Awareness days can be used to communicate important public health messages such as the vital importance of early diagnosis to improving treatment outcomes for people with inflammatory RMDs, mobilise grassroots support for a cause, or alternatively to deliver a highly targeted message to a group of national or international political decision-makers to create a sense of urgency for political action.
Rather than addressing the full scope and potential of international awareness days in this article, however, I want to focus on their particular use by an individual organisation for advocacy purposes at the EU level. Because, while awareness days can be a powerful tool for change, it is important for organisations to use them strategically and dynamically if they are to maximise their direct political impact.
Cast an eye over the ‘UN’s list of International Days and Weeks’ and you will see a calendar packed with worthy causes. Then bear in mind that there are many other annually observed awareness days like World Arthritis Day that do not belong to the official UN Calendar.
To stand out and make a splash, it is important to critically review the merits, scope and shape of your international awareness day activities each year as well as select the messaging that is most relevant and attention-grabbing for your key target audience.
One rule of thumb is that if you find yourself reaching for last year’s event programmes, agendas and materials there is a risk that your organisation has fallen into the costly trap of committing to a fixed annual activity, rather than designing the activities to maximise impact on the current policy and legislative agenda.
For many years EULAR held an annual conference in Brussels, the capital city of the European Union, on World Arthritis Day. This was the centrepiece of EULAR’s annual advocacy efforts, enabling its representatives to discuss issues on the EU policy and legislative agenda, listen to interventions from invited Commission officials and Members of the European Parliament and present relevant research findings.
While popular and not without its merits, a simple analysis showed EULAR’s advocacy committee three key findings. Firstly that the event consumed a substantial proportion of EULAR’s total advocacy budget, secondly, that over the years the vast majority of attendees had become EULAR representatives rather than target stakeholders, and finally that while the event (and complimentary communications activities) helped to raise the profile of RMDs with political audiences, it could not be used to influence the detailed wording of EU policy and legislative decisions that are being taken on an ongoing basis throughout the year.
The third point may seem slightly redundant. It is of course not the overall purpose of an international awareness day to influence the detail of policy decisions over the course of a year. However, it is very important for organisations to balance their desire for profile with a recognition that unless the complementary resources exist to convert awareness into concrete policy and legislative changes, no advocacy impact has been achieved.
The COVID pandemic and the switch to digital events spurred innovation and change in terms of EULAR’s approach. In 2020, EULAR held its inaugural ‘Brussels Forum’, an online panel discussion featuring representatives of the European Commission, Parliament, and responsible EU agencies alongside representatives of EULAR’s three communities (researchers, health care professionals and people with RMDs). The convenience of the shortened programme and online format enabled EULAR to secure the ‘attendance’ of a greater number of key target policymakers. The reduction in costs provided greater resources for follow-up meetings to establish deeper relationships and facilitate the inclusion of EULAR’s voice in key policy and legislative debates throughout the following months.
In 2021, EULAR has taken an even more pared-down approach. Given the late stage of negotiations on several European Parliament reports on topics of key relevance for EULAR, such as the new pharmaceuticals, and health and safety at work strategies, the advocacy team decided to use World Arthritis Day as a milestone around which to focus resources on intensive engagement with MEPs in key committees to promote their awareness and support for EULAR’s positions and proposed amendments.
Additionally, we have used World Arthritis Day to raise awareness in the European Commission of concerns about anti-inflammatory RMD drug shortages, resulting from their repurposing as a treatment for COVID-19, and the impact on the lives of European citizens with RMDs.
Now, following the recent release of the European Commission’s 2022 Work Programme, EULAR advocacy has already identified the planned revisions of EU legislation on pharmaceuticals, and medicines for children and rare diseases, as well as the launch of the European Care Strategy in Q3/Q4 of 2022 as key milestones in the political agenda that could be addressed through our World Arthritis Day awareness-raising activities.
The discussion on which scope and type of activities will be most impactful for EULAR’s advocacy has already begun.
A desire to travel led Holly Patrick to the business meetings and events world and she’s never looked back. Holly takes a particular interest in event sustainability and creating a diverse and inclusive industry. When she’s not working, she can be found rolling skating along Brighton seafront listening to an eclectic playlist, featuring the likes of Patti Smith, Sean Paul, and Arooj Aftab.
