title: Pfizer-sponsored satellite symposium at the European Haemophilia Consortium (EHC) Congress: changing the policy landscape: haemophilia patient involvement in healthcare decision-making.
abstract: The annual European Haemophilia Consortium (EHC) Conference 2013, held in Bucharest, Romania, 4-5 October, was attended by over 200 patient advocates, policy makers and healthcare professionals from across Europe. Pfizer sponsored a satellite symposium at the conference entitled: 'Changing the policy landscape: haemophilia patient involvement in healthcare decision making', drawing on expertise from a panel specialising in the field of rare disease. The symposium, chaired by Declan Noone (Irish Haemophilia Society) on behalf of Brian O'Mahony (Irish Haemophilia Society), examined the current policy and economic landscape in Europe and how pressures on healthcare budgets are impacting haemophilia care. The symposium also discussed the importance of representing the 'patient voice' in key policy decisions through identification of opportunities for patient advocacy group engagement. Alastair Kent (Genetic Alliance UK) opened the session by highlighting that the downturn in the global economy has refocused decision-making in healthcare, moving cost-effectiveness of healthcare interventions higher up the agenda for decision-makers and payers. In light of this, patient engagement is more important than ever, particularly in healthcare technology assessments (HTAs), to ensure that patient and family opinions are represented. Ségolène Aymé (Orphanet) built upon this in her session discussing the rare disease policy landscape and regional initiatives taking place in Europe, including the EUROPLAN process, for which the participation of the haemophilia community is critical. Finally, Declan Noone provided an example of how the EHC, through its survey of 35 countries, demonstrated not only the considerable differences in the quality of care available for people with haemophilia across Europe, but also how the data from the survey could be used as a powerful advocacy tool to initiate change in countries with lower gross domestic product (GDP) that face healthcare spending challenges. The meeting closed with a 'call to action' for patient advocacy groups, focusing on avenues by which patients can become involved in the decision-making for policies that will ultimately affect access to, and quality of, haemophilia care in their country.
authors.affiliation: Irish Haemophilia Society, Dublin, Ireland.
authors.forename: Brian
authors.initials: B
authors.lastname: O'Mahony
authors.forename: Alastair
authors.initials: A
authors.lastname: Kent
authors.forename: Ségolène
authors.initials: S
authors.lastname: Aymé
mesh_terms: D006291:Health Policy; D006467:Hemophilia A; D006801:Humans; D010358:Patient Participation
keywords: European Haemophilia Consortium; Genetic Alliance UK; advocacy; healthcare; orphanet; patient organisations; policy; rare disease