Getting the message

Professor Iain McInnes, past president of the European Alliance of Associations for Rheumatology (EULAR), shares how the league streamlined its communications & advocacy functions...

Since the mid-2000s, communications have started to speed up with the introduction of smartphones, the dawn of social media and the general trend towards digitisation of human life.

Traditional and established top-down senders and a selection of one-way, analogue media channels centred around print and basic digital presences have quickly given way to diverse senders and multiple two-way digital interfaces. This has aided the development of a highly fragmented environment in which all information competes for interest by the second.

 Add in the COVID pandemic and we find ourselves in yet a further stage of the digital transformation process. EULAR, the European League of Associations for Rheumatology, has not been immune to the changes that this transformation demands and the consequences it brings. Structured with an administrative office at its core, the EULAR network comprises academic researchers, health professionals and patients and stretches across Europe – and beyond. Its working set-up has been centred around an ever-growing digital approach before the pandemic; the digital communications options available to the network were becoming evidently insufficient, with network needs quickly outpacing what was on offer – and opportunities increasingly missed to profile rheumatology.

Reputational risk

The fast pace of change was also encroaching on the legislative environment: The extremely crowded environment in Brussels, increasing year on year, meant that EULAR’s voice in the political arena was becoming weaker.

This was leading to less likelihood of gaining funding opportunities besides the key diseases with which the rheumatic and musculoskeletal diseases share co-morbidities: cancer, obesity, diabetes were all pro-active and fast in their ability to act and bring their case to the political table, leaving rheumatology unable to keep up, despite the scientific evidence of co-morbidities.

Old models

Traditional public relations and communications activities at EULAR followed the structure of most learned societies active in medical research in Europe:

  • An annual congress saw key, set pieces including press and event communications, run for set time periods once a year solely focused around the event.
  • Education activities, common across all medical research organisations, were offered without strong engagement and outreach approaches.
  • Recommendations written by dedicated task forces within the EULAR network and published throughout the year in the EULAR Journal Annals of Rheumatic Diseases were gaining no coverage in medical and trade media.
  • Smaller events during the year were run with very basic communications infrastructure which hampered engagement by delegates and those interested in the topic, and which also significantly reduced the potential for material re-use after the event.
  • Digital infrastructure was available but limited. Websites, even with updates, were quickly out of date in their look and feel and capability/interoperability, and social media presence, was conducted at a very basic level with no clear purpose or recognition of which audiences were being targeted.
  • Branding was not unified, with various interpretations and representations of the organisational name and its communities.
  • Advocacy efforts targeted towards the Brussels institutions and the member states were run with a physical office in Brussels, often executing a passive presence that followed rather than innovated new connections and possibilities.

Among the remaining major challenges, the setup of the majority of EULAR’s communication projects lacked a clear purpose and goals, clear responsibilities, standard operating procedures, tracking and reporting standards, and multiple, disjunct suppliers.

Supplier reliance

The greatest risk was posed by the supplier side: All communications-related activities were outsourced to high-cost suppliers running project management models that had not been reviewed for at least five years.

The processes were also unknown to EULAR – with no evidence of results achieved and associated impact of the activities undertaken. Suppliers were often making decisions on behalf of EULAR that were not aligned with – or even compatible with – the needs of the network.

Despite the presence of a newly created position of Communications Manager within the EULAR Office, no insight or control sat within the organisation for the area of communications and public relations.

EULAR was at a distinct disadvantage as a result: The organisation was operating heavy structures without transparency, built to be run by large, outsourced teams with no connection to the organisation over periods of many months to serve one specific purpose – with no demonstrated impact or return on investment. In this structure, the organisation was unable to act – or react – to navigate the new world order.

It was paying a high price in terms of finances, missed opportunities and, ultimately, its reputation. Together, these factors were doing a disservice to helping the organisation fulfil its mission of helping those suffering one of the 200 rheumatic diseases.

Agile models

To address the challenges, EULAR set up a dedicated communications and publications committee, comprising individuals with experience and interest in the area from the network. The committee worked with the communications manager in the EULAR office to help analyse the status quo; over the course of 18 months, a full audit was executed, a set of recommendations for change and a strategic communications plan produced, as well as significant changes implemented to all projects.

Fundamental changes included:

  • Tracking and auditing of project management processes run by suppliers and development of new.
  • Slimline structures that placed project control within the hands of the organisation.

Through this activity, the role of the communications manager was increased, enabling information to be brought back to the committee and discussed regarding current outcomes – and what objectives should be achieved to serve the needs of the organisation.

Transparency enables smart choices

This ability to determine individual project purpose and to track processes meant that it then became easier to determine what was needed by an external supplier – and at which point of the project management cycle the supplier should act.

By the end of 2019, communications projects were all operating according to new structures and with budgets reduced by 50 to 70 per cent, redundant activities discarded, gaps and opportunities identified and supplier changes made to new partners whose approach and values aligned with the thinking and needs of the organisation.

With all areas identified and new, lean structures in place, the organisation was now ready to bring all activities in-house and to thereby swap around the non-transparent, supplier-dominant structure of the past to internally-led processes that directly served the needs of the organisation.

Addressing Advocacy

At the beginning of 2020, EULAR started the audit of its public affairs activities, which had been run by a Brussels-based consultancy with the same model for almost twenty years. Both direct and indirect costs incurred through this model were high and the impact was unclear.

The pandemic ironically aided efforts through creating the absolute need for a fully virtual environment for all activities, including the delivery of policy-related events. This meant that activities were very targeted using digital platforms, more so than in an in-person format, and all indirect costs were removed.

 By the end of 2020, EULAR had dissolved its Brussels office, changed to an expert supplier active in the Brussels arena and delivered Advocacy events and efforts with demonstrated impact in the institutions. By the end of the first quarter in 2021, demonstrated impact in advocacy efforts had risen eightfold over the same time period in previous years, supplier costs were reduced by 30 per cent and indirect costs were reduced by 100 per cent due to the ongoing pandemic.

Putting EULAR in control

Focus is now on the integration of the advocacy chair and committee to the EULAR Office Advocacy department according to the new statutes of the organisation.

This structure ensures that the project management team in the EULAR Office conducts projects and activities that are relevant to the needs of the network; no project is undertaken without the prior consent of the EULAR advocacy chair and the agreement of the committee. The inclusion of a sub-committee on communications within the advocacy committee is designed to look at the specific needs of the communications portfolio.

Taken together, the governance model twinned with the new project management approaches have the opportunity to deliver results that are driven according to the needs of the organisation in a highly agile and cost-effective manner.

Next steps include the definition of the new strategic objective for the area of advocacy and the related specific aims, feeding into the next five-year plan starting in 2023.

By putting the organisation in control of its activities in this area, business models are not only made lighter and more impact and cost-effectiveness achieved; ultimately the ability for the network to determine where the journey should go, aided by experts to guide and execute their wishes, enables the organisation to establish its name in a way that enables delivery of the EULAR mission: to help those who are suffering the debilitating effects of rheumatic and musculoskeletal diseases.