Member Organization spotlight: It all starts with good practices

After a well-earned coffee break, the next session focused on another key Member Organization (MO) priority: How to set up good governance and the difference this can make to patients and carers.

The moderator for this panel discussion was Michal Rutkowski, joined by Evelien de Bruin from HAE Australasia, Peter Strahl from HAE Hungary, and Olena Mykal of HAE Ukraine, all of whom brought their own experience of putting in place principles to support good governance.

Michal asked the panelists why good governance principles are important to them. Peter, Evelien, and Olena all agreed that greater trust results from good governance. Evelyn suggested this was especially important as there are so many stakeholders involved: patients, carers, healthcare professionals, governments, and pharmaceutical companies. They all need to believe in and trust an organization before they can work together.

Olena explained that the basis of trust is transparency. A well-run organization is transparent in its dealings and activities, which are clearly visible to everyone.

Peter concurred, believing that a clear policy, with a mission and goals, means the organization dedicates its efforts to serving patients, which is consistent even if personnel or volunteers may change over time. Peter shared some concrete examples from HAE Hungary. He started with the three elected officials who jointly make decisions on behalf of their patients and registered members. They are also clear with these decisions through their website and social media channels.

According to Evelien at HAE Australasia, the organization’s legal registration is very important. Their MO is a charitable organization that confers tax benefits, but it also defines what the organization can and can’t do. Abiding by these conditions is important, and is guided by a five-person board of directors that hosts annual general meetings, takes notes, and reports its finances to ensure the all-important transparency.

Olena expanded on how to retain the community’s confidence. She suggested that communication is paramount; it is important to communicate openly and transparently with a clear single message for all stakeholders.

Michal invited Peter to consider how strong governance opened up opportunities for HAE Hungary. His perspective was that a transparent and professional organization will always receive more opportunities for collaboration, something which Evelien agreed with. In Australasia, the distances to travel to meetings are vast. By establishing clear financial processes and objectives, they developed the necessary proposals to secure financial support from pharmaceutical companies in the region and to follow up with a report demonstrating how the organization used the funds, fostering further trust.

For Ukraine, their organization can work with the Government and the pharmaceutical industry to address the registration of medicines for patients, which is only possible because of their clear governing principles.

Finally, Michal asked the panel to share their advice to other organizations. Evelien suggested that documentation was a vital first step. “Write everything down,” she advised. “When you are developing your mission and your strategy, write it down.” She felt documentation meant everyone could see and understand it, thereby building the organization’s long-term sustainability. Peter felt that a simple structure was helpful, but keeping finances in mind was important, as this puts the organization on a long-term footing.

Michal concluded by thanking the panel and summarizing that good governance isn’t just about rules, it is about trust, sustainability, and credibility, which are critical to effective advocacy. He also reminded the audience that HAEi has produced Principles for Good Governance, which you can find here.