James Gorman is a 30-year old with severe haemophilia A. Here he writes on how people who live with haemophilia bring unique knowledge that should shape the care they receive.*

As people who live with haemophilia every day, we bring a unique level of expertise and knowledge that can, and should, shape the healthcare that we receive. We live in a time when modern healthcare systems are trying to move towards more personalised and patient-centred forms of medicine, with aims to empower people to have more of a say in all of the aspects that affect their health. The European Patients Forum describes patient empowerment as enabling patients “to be involved in the decision-making and management of their condition according to their preference.”

But what does this actually mean for us as people with haemophilia? What can you do to become empowered? Here’s some of my experiences…

Be informed

One of the greatest ways that I’ve found to be empowered to have more control over my health and haemophilia is to learn more about it – this has been called ‘health literacy’. It might seem slightly contradictory that I’m suggesting that ‘living life beyond haemophilia’ involves engaging with it more. However, from my own experience, I’ve found that having the knowledge, understanding and confidence to ask relevant questions during meetings with clinicians can be crucial to becoming an active partner in decision-making processes and accessing the kind of treatment that I want. Challenging the status quo of today’s haemophilia care is about being able to ask for what you want and knowing what this might be. We’re lucky to live at a time when the accessibility of information is greater than ever before, and have routes to learn about our treatment options from a wide range of sources. You could start with the World Federation of Haemophilia and Centers for Disease Control and Prevention websites.

Be part of the haemophilia community

Following on from this, we’re also living in a time when it’s easier than ever to connect with other people with (or affected by) haemophilia. As someone with no family history of haemophilia, no siblings with haemophilia, and having attended small clinics my whole life, it’s rare that I’ve had a chance to discuss my experiences with others. However, with the internet, whole communities of people living with haemophilia have formed, allowing us to explore topics of concern together, empowering one another through sharing similar stories and questions. The main challenges here are whether to search for an Americanised or anglicised spelling! Being part of these communities have shaped my experiences of my own haemophilia and my sense of wellbeing in knowing I’m not alone. It’s also given me access to learn from, and discuss haemophilia, with a range of different people – including other people with haemophilia, of different ages and geographic contexts, clinicians with different perspectives and expertise, and researchers at the cutting edge of haemophilia. It’s meant having my own preconceptions about haemophilia challenged, learning and being inspired by the achievements of others. Doing this empowers me to have greater control over the decisions and actions affecting my haemophilia, and enables me to be confident that I can live my life beyond haemophilia.

Be involved in research

The role played by people with haemophilia in research is changing. Scientific and healthcare researchers are increasingly keen to actively involve patients in research, doing research ‘with’ people affected by the research, rather than ‘to’, ‘about’ or ‘for’ them. Whilst haemophilia doesn’t have the same culture of involvement as other health conditions, this is growing, and will be a vital part of the future of haemophilia. Seizing these new opportunities and being involved in research allows us, as people with haemophilia, to set the agenda, and have a say on the kinds of questions that we think are important priorities and should be addressed. Examples include, The Bleeding Disorders Priority Setting Partnership, where people with haemophilia in the UK contributed to producing a list of the most pressing questions for our community, as defined by us.  

*These are the opinions of the patient and not necessarily the view of Swedish Orphan Biovitrum (SOBI).