POS0306-PARE GROWING LUPUS EUROPE BASED ON A STRATEGIC PLAN – WORTH THE EFFORT, AND EASIER TO DUPLICATE THAN YOU THINK (2024)

Abstract

Background: In the absence of strategic direction, patient groups struggle to deliver results that meet their ambitions. Projects selection based on short term considerations or association to funding combined with changing priorities prevent more significant projects implementation.

Objectives: To share Lupus Europe experience on how a simple strategic plan helped achieve long term goals and mobilise resources.

Methods: Back in 2011, Lupus Europe was a small organisation, with less than 30k€ annual budget, and one key event per year. The Board then decided to take a more strategic approach. Starting from defining a simple and clear vision (“A fulfilling life for all people living with lupus in Europe, until we reach a world without lupus”), the organisation defined the biggest contributions it could make to reach it, which became 4 Strategic objectives (Research is supported, Members are Empowered and energized, Selected partners and media make lupus voice heard and the community is sustainable). From these cascaded a choice of ways to achieve them (our strategic pillars) for each of which we defined a number of 5 years measurable deliverables to pursue. These were cut in intermediate steps, leading to a 5 years plan, aligned with clinicians and academics. The plan was then voted by our members and presented to our partners, organised in visual ways that help memorise it and structure our presentations. It became the backbone of our communication, decision making, actions and reporting: At each Board meeting, we review progress on our annual steps, adjusting agendas and activities to meet the goals and assigning leadership where needed. Around September, we look at the next years’ steps and amend them if needed to better reach our 5-years’s goals and prepare our funding requests to industry, based on OUR projects and plans, not theirs.

Results: In 2023, Lupus Europe is in its 3^rd “5-years plan”. The number of industry sponsors grew from 2 to 14. We are recognised as an EMA partner. Our volunteers network delivered more than 3,000 hours of support from more than 50 motivated volunteers. We run patient panels, surveys, a Patient advisory network, consistent social media and a website translated in 15 languages. We can approach partners with clear asks and select the projects we think add real value, and these projects are incredibly bigger than what we imagined ever reaching 12 years ago. Our total budget now reaches 400k€, more than we need for all our planned activities, allowing us to reject any sponsor not meeting our requirements. We measure our progress 3 times a year, allowing corrective action where needed. Our plan allows us to focus on priority and reject distractions. Virtually all our members and industry partners know our strategies, repeated year after year as the anchor of all we do, and can explain how they fit together. We were rated “best in class” by many industry partners on our “professional strategic focus” and the quality and quantity we deliver as a volunteer based organisation. We know where we go, and this reinforces our sense of purpose, our energy to deliver, our confidence and our feeling great as a team.

Conclusion: Designing a Strategic plan is a key enabler that all patient organisations, regardless how small they are, can implement. It guides actions and helps achieve objectives. It is substantially easier to do than many think, but requires patience to install.

REFERENCES: NIL.

Acknowledgements: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies.

Disclosure of Interests: None declared.