Patient Organisations and Europe’s fight against COVID-19: Industry – let’s step up

With the emergence of COVID-19 we are facing a global health crisis that has disrupted our normal ways of working, business practices and even our personal lives. The level of uncertainty is unprecedented. We need to find new ways to manage our work-life, our relationships and partnerships. Nowhere is this more relevant, than in our relationships with patient organisations.

They are on the front line of the fight against COVID-19, providing advice and support to the patient communities they serve. In the midst of this unprecedented situation they represent, and care for, those most vulnerable to the impact of COVID-19.

And all of this, at a time when their daily operations, projects, events and staff are deeply affected by the crisis. This has an implication on revenue, on capacity, even their long-term viability and sustainability.

Having worked with the EFPIA Patient Think Tank[1] for the last three years, I have seen the evolution of patient engagement. Initially a few dedicated individuals from patient organisations and companies began to initiate a cultural shift in the dynamic of the relationship. They have put meaningful collaboration front and centre, building long-term, strategic, ethical and transparent relationships that ultimately lead to better outcomes for patients and shape how companies research, develop and deliver new treatments. At EFPIA, meaningful patient engagement is at the heart of everything we do.

We, as an industry have come a long way moving from short-term transactional relationships to long-term strategic partnerships with patient organisations. Now, with Europe at the epicenter of the COVID-19 crisis, with huge demand on patient organisations’ resources we need to further evidence our commitment to those partnerships and collaborations. In short, we need to make sure we step-up at this time of crisis.

While many companies have already demonstrated significant effort and commitment to supporting patient organization partners at this critical time, I have outlined four simple, practical steps we can take now that will make a real difference:

1. Get in touch
Reach out virtually to patient organisations that you work with. Get their perspective on the current challenges and priorities. Identify ways to support them if possible. Can you explore new communications platforms for service delivery? Provide in-kind support? Expertise? Volunteering? Access to data on the impact of COVID-19 on their patient community?

2. Seek creative, collaborative solutions
Try to find ways to maintain ongoing projects and relationships. Think creatively about adapting short, mid-term plans to the current situation.

3. Be flexible
About deadlines, formats, agreements and especially already existing funding and sponsorship arrangements. We need to recognize the challenges that patient organisations face in this extraordinary time and do our best to maintain meaningful collaboration. This also means we need flexible processes in place to review new, COVID-19 related questions and funding requests.

4. Communicate proactively
Keep patient organisations informed about your relevant activities and how the COVID-19 pandemic may impact them. Share any implications on clinical trials or medicines supplies.

There will be a post-COVID-19 world when life will take back its normal course. We will go back to face-to-face interactions, challenging discussions and healthy disagreements, we’ll keep working together for our shared objectives, but for now, we just need to step up, listen and support where can.

Please share your stories of collaboration with us at this difficult time, we would be happy to feature them to share best practice and inspire others. Contact us at

[1] The EFPIA Patient Think Tank is a dedicated group of patient organisations and industry representatives that plays a fundamental role in driving patient input in to EFPIA policy development and proposes principles, guidelines on working together.

Zsofia Bakonyi

Zsófia Bakonyi is Senior Manager of Partnerships at EFPIA, the European Federation of Pharmaceutical Industries...
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