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Measuring what matters

"Not everything that can be counted counts. Not everything that counts can be counted"

Patient-Reported Outcomes measure the patient perspective, and can help redefine haemophilia care.

We are in a golden age of haemophilia research and development. Advances in treatment mean that, nowadays, many patients can successfully manage their disease while maintaining their independence.
 

With bleed rates under better control, the community’s focus is instead shifting to what else matters most to people living with haemophilia – and how to incorporate those factors into research and day-to-day care.
 

“Understandably, research in haemophilia has traditionally focused on bleed rates, but these alone just don’t tell the whole story,” says Mark Skinner, a leading advocate for people living with bleeding disorders, who also himself lives with haemophilia A. “We need to start seeing how living with haemophilia affects the whole person, beyond bleeds. We need to tell the bigger story around the personal impact, the societal consequences. And to do this, we need other ways to collect data that measure the emotional effects and quality of life impact of haemophilia and of new treatment approaches, to complement the clinical picture.”
 

This is where Patient-Reported Outcomes (PROs) come in. Find out how PROs measure the patient perspective, and can help redefine haemophilia care.

Seven things you should know about PROs:

We all have a role to play

The landscape in haemophilia, including how we are able to gather data, is rapidly changing. The haemophilia community – patients, doctors, scientists, advocacy groups and regulatory authorities – will all need to work together to adapt to the rise of PROs and harness their potential.

That’s why Roche are providing grants to fund important PRO research – such as PROBE – to find out what matters most to people with haemophilia, and are launching awareness campaigns – such as  ReDefine Haemophilia – to spark conversations around what it really means to live life with haemophilia.

Visit the ReDefine Haemophilia website

References:

"Not everything that can be counted counts. Not everything that counts can be counted" : 1963, Informal Sociology, a casual introduction to sociological thinking by William Bruce Cameron, Page 13, Random House, New York.

Tags: People, Science, Culture, Innovation, Society, Patients