Improving haemophilia patient care through sharing best practice. (4th September 2015)

• Record Type: Journal Article
• Authors: de Moerloose, Philippe; Arnberg, Daniel; O'Mahony, Brian; Colvin, Brian
• Is Part Of: European journal of haematology. Volume 95(2015)Supplement 79
• Page Start: 1
• Page End: 8
• Publication Date: 2015-09-04
• Subjects: advocacy -- best practice -- health technology assessment -- outcome data -- patient organisation; Hematology -- Periodicals; Blood -- Diseases -- Periodicals; Blood -- Periodicals; 616.15005
• DOI: 10.1111/ejh.12630
• Languages: English
• ISSNs: 0902-4441

Abstract

Abstract: At the 2014 Annual Congress of the European Haemophilia Consortium (EHC) held in Belfast, Northern Ireland, Pfizer initiated and funded a satellite symposium entitled: ' Improving Patient Care Through Sharing Best Practice' . Co‐chaired by Brian Colvin (Pfizer Global Innovative Pharma Business, Rome, Italy) and Brian O'Mahony [President of the EHC, Brussels, Belgium], the symposium provided an opportunity to consider patient care across borders, to review how patient advocacy groups can successfully engage with policymakers in healthcare decision‐making and to discuss the importance of patient involvement in data collection to help shape the future environment for people with haemophilia. Professor Philippe de Moerloose (University Hospitals and Faculty of Medicine of Geneva, Switzerland) opened the session by discussing the gap between the haemophilia management guidelines and the reality of care for many patients living in Europe, highlighting the importance of sharing of best practice and building a network of treaters and patient organisations to support the improvement of care across Europe. Daniel Arnberg (SCISS AB, Hägersten, Sweden) reviewed the health technology assessment process conducted in Sweden, the first for haemophilia products, as a case study, focusing on the role of the patient organisation. Finally, Brian O'Mahony reflected on the central role of patients as individuals and also within patient organisations in shaping the future of haemophilia care.