Working together with patient groups
At 16, I went to Romania to work in an orphanage just outside Craiova. Just after the 1989 revolution, it was a fantastic, sometimes heartbreaking, often beautiful experience and the start of a long career working in NGOs and patient organisations. A few (too many) years on, I have spent half of my working life in the voluntary sector and half working with industry. So yesterday’s meeting of patient organisation and industry colleagues, back in Romania had special significance for me. How these two critical, but very different sectors, that share so many goals can work together for the benefit of patients, has long been a deep interest of mine.
All partners in healthcare are looking to find new ways to ensure that patients are at the heart of decision making. The concept of no decision about me without me should be a basic tenant of how healthcare is delivered but also how we research, develop and use medicines. From an industry perspective, that often means getting those invaluable insights from patients organisations and advocates. Insights that can shape the future direction of basic research, drive our approach to clinical development, how we licence, value and introduce medicines and how we utilise healthcare data to zero in on the outcomes that really make a difference to patients.
How we gain these insights, how we can work together in the right way to benefit patients was the subject of yesterday’s meeting in Bucharest with Patient Organisations and EFPIA members companies across the CEE region. Organised in partnership with ARPIM, our member association in Romania, the meeting looked at the challenges faced by NGOs and patient organisations in working with industry in the region. We looked at some potential models for better collaboration and were privileged to hear some fantastic examples of existing projects, being delivered in partnership, that are benefitting patients and healthcare systems across the region.
The meeting was inspired by the EFPIA Patient Think Tank, a regular forum that includes industry and patient organisation representatives in Brussels. The group have been focused on developing long-term strategic relationships, moving away from ad-hoc, issues based interactions, to support positive collaborations that benefit patients and based on a set of mutually agreed principles, enshrined in the “Working together with Patient Groups”, published yesterday.
The delegates were dynamic, open and honest in sharing their views. Many of the topics discussed echoed conversations I have had with patient organisations right across Europe, but there were a number that are shaped by the socio-economic, political and healthcare landscape of the CEE region. The group identified a range of challenges around how we create, manage and regulate relationships, how codes of practice are interpreted and implemented and how the relationship between industry and patient organisations is perceived in the media, by governments and by the public. There were a number of funding issues discussed, from the availability of funding sources and the balance between project and core funding to the transparency of financial relationships.
To address these challenges the group discussed a number of potential solutions including the creation of regional and national patient organisation - industry forums to consider locally relevant solutions and develop models for positive collaboration. It was the early stages of a new dialogue, but a conversation we are committed to continuing and I hope that means I will be back to Romania to continue the discussion soon.