At the 25th Annual European Haemophilia Consortium (EHC) Congress held in Prague, Czech Republic, in October 2012, Pfizer sponsored a satellite symposium entitled: 'Understanding Health Outcomes: Focus on Haemophilia'. Co-chaired by Brian O'Mahony (President of the EHC) and Brian Colvin (Director Medical and Scientific Affairs Haemophilia, Pfizer, Europe), the symposium examined the role of outcomes in haemophilia care in an age of evidence-based medicine. The current global economic recession has inevitably directed the spotlight of governments and health economists towards the cost of healthcare. Now is the time to focus on which outcome measures are important to collect in order to validate these costs, and how to standardise collection and reporting measures to support services and patient care. Using the United Kingdom (UK) as a case study, where initiatives in data collection and reporting are being trialled, Gerry Dolan opened the discussion by highlighting the importance of a multidisciplinary approach to ensuring success. Looking at specific measures of haemophilia healthcare, Carlo Martinoli focused on joint scores as a clinical outcome measure that can be systematically collected, and the role of ultrasound in bringing joint assessment into the hands of the haemophilia treater at the 'bedside'. Brian O'Mahony then brought the discussion full circle by highlighting the role of the patient in the multidisciplinary care team and the importance of the patient voice in the assessment and critical examination of health outcomes by payers and government bodies. The meeting closed by summarising the importance of collaboration between patients and their carers; physicians; members of the healthcare team; and budget holders in advancing haemophilia care, to provide the best possible care with optimum long-term outcomes for people with haemophilia.
© 2013 John Wiley & Sons A/S.