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New research shows the patient voice is key when buying clotting factor products

IMG_0359Today, patient representatives from all over Europe gathered in Dublin for a prestigious event to mark World Haemophilia Day.

The European Haemophilia Consortium shared exciting new data on the value of patient and clinical involvement in the procurement of clotting factor products.  A recent pan-European survey not only found that conducting a national tender lowered prices but, strikingly, that tenders where patients and clinicians took leading rolls achieved the best value of all.

The meeting also learned that the adoption of a new EU Directive on procurement (2014/24/EU) and the licensing of new, longer acting products, means that tender criteria in many countries will have to be rewritten. This provides a fantastic opportunity for countries who run tenders to formally include patients and clinicians on their tendering boards.

Clotting factor procurement is a matter for the Scottish Government.  However, for the last three tenders Scotland has purchased products as part of a UK tender.  Haemophilia Scotland is calling for Scottish patients to have a formal role in the procurement process. The Scottish Government has already announced that it will establish a National Haemophilia Committee in Scotland (to be known as the National Managed Clinical Network for Inherited Bleeding Disorders). That will give patients a voice in decisions about how Haemophilia Services in Scotland are delivered. We believe that the Scottish patient voice must be heard when procurement decisions are made as well.

The Penrose Report revealed that English patients had access to products which didn’t transmit Hepatitis C much earlier than in Scotland.  We believe that decisions like that wouldn’t happened if Scottish patients were properly involved. Putting Scottish patients at the heart of the procurement process is an important lesson from the findings of the Penrose Inquiry.

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