Who are Haemnet?
Back in 2010, Dr Kate Khair and Mike Holland met at a European haemophilia research meeting on treatment adherence among teenagers. They recognised a need for more communication and knowledge sharing opportunities between healthcare professionals working within bleeding disorders to better understand patient and family experience. From this, Haemnet was born, providing an online platform for healthcare professionals to ask questions, share knowledge and collaborate.
Since then, our work has evolved and broadened across the bleeding disorders community. Today Haemnet specialises in three key areas:
Haemnet works closely with healthcare professionals, patient communities, industry and other key stakeholders to produce educational content and to deliver bespoke training and education. This includes Contemporary Care of People with Bleeding Disorders, a residential training course for HCPs new to the specialty, completion of which is mandated in the UK haemophilia centre peer review process. We also offer updates for more experienced nurses on specific topics and run the annual Haemophilia Nurses Association (HNA) educational event.
Haemnet works closely with healthcare professionals, patient communities, industry and other key stakeholders to deliver bespoke qualitative research into the lived experience of people affected by bleeding disorders.
We have team members who are experienced qualitative researchers and have completed numerous investigator-initiated studies and competitively won grants to fund research projects. In addition, we have a European research nurse group which promotes international research and collaboration.
For healthcare professionals, knowledge gained through shared experience promotes expertise in disease management. So Haemnet offers opportunities for sharing of peer-to-peer disease-based knowledge through its meetings and social media presence. And if HCPs are to conduct research with a view to changing practice, they need an outlet for publishing their work. In 2014, Haemnet established The Journal of Haemophilia Practice, an open-access, peer-reviewed journal, now published for us by De Gruyter.
Our work is made possible by our dedicated team of expert researchers, healthcare professionals, community advocates and communications professionals.
Mike was a freelance medical and health care writer/editor, having cut his teeth on a range of academic and news-based publications. He has worked with professional organisations, pharmaceutical and public relations companies, medical education agencies and charities, preparing materials for healthcare professionals, patients and the media. He has written several books, many monographs and is the originating author of more than 45 articles published in peer-reviewed journals.
Dr Kate Khair
Since becoming a state registered nurse Kate has acquired many professional qualifications, including state registration in paediatric nursing, a master’s degree in anthropology, a City and Guilds Master’s degree in higher levels of practice, several modules in advanced nursing and a PhD in health and social care. She worked in the haemophilia treatment centre at Great Ormond Street Hospital for Children from 1991 until 2018. She is well known for championing the nurse’s role in the haemophilia multi-disciplinary care team.
Before joining Haemnet Luke worked within healthcare communications across a number of disease areas. He is an experienced public speaker and patient advocate having worked and volunteered extensively with stakeholders across the bleeding disorders community. As a biology graduate, Luke combines scientific knowledge with his experience creating digital content to shout about what we do at Haemnet on social media and beyond. You’ll often find Luke with camera in hand, creating videos and drinking plenty of coffee!
Debra was Lead Nurse at the Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London. Her main academic interests lie in qualitative research, particularly relating to the lived experiences and quality of life of people with bleeding disorders. She completed her MSc in Advanced Practice in 2014 with a research project exploring how men with haemophilia describe their quality of life. She has a particular interest in supporting the needs of women with bleeding disorders.
Sandra is a strategic development specialist with a track record of working with groups to achieve shared purposes that make a real difference for the people who use and deliver services. In a diverse career has advised charities, central government departments, local councils and national professional bodies. She has worked in the Department of Health, where she supported ‘policy into practice’ initiatives. Before Haemnet she was strategic development director at a mental health charity that supports people to achieve greater independence and mental wellbeing.
Having previously worked with literary and cultural archives, Kathryn has been a freelance writer, editor and researcher since 2011. Kathryn has a passion for working with words and is co-editor of a long-running literary magazine in her spare time. As well as supporting Haemnet’s publishing activities she also works with a range of individuals and organisations across wide range of subject matter – from art to artificial intelligence.
Haemnet also works closely with a wider team of freelance writers, editors, statisticians, graphic designers, animators, and web developers.
The Haemnet Foundation
The Haemnet Foundation is a registered charity (no 1152241) overseen by a board of trustees, all of whom share a single vision: that excellent haemophilia care should be an everyday experience.
Our mission is to see a vibrant and interactive community of nurses, physiotherapists and other professionals sharing knowledge and engaging in research designed to improve the lives of those affected by bleeding disorders.
Board of Trustees
Marie works in Oxford where for 10 years she cared for children with various haematological and oncological conditions before branching off to paediatric haemophilia in 2015. She is passionate about the care of children with bleeding disorders, and about improving patient standards. She is currently undertaking an MSc in Advanced Nursing Practice. Marie is a member of the executive committee of the Haemophilia Nursing Association (HNA) which is involved in national developments for patients with bleeding disorders. She is keen to be involved in research involved in exploring improved practice for paaediatric patients with bleeding disorders.
April is an Adult Nurse Specialist at The Royal Victoria Infirmary Comprehensive Care Centre in Newcastle upon Tyne, where she has worked since 2011. She completed her nursing Diploma in 2007 at Northumbria University and a further Degree in Practice Development in 2014. As an integrated centre that cares for both adult and paediatric patients with bleeding disorders, April has a particular interest in transition for adolescents. In 2016, she was one of the first participants in the Aspire leadership course run by Haemnet and used this opportunity to develop and enhance their transition services with a focus on improving communication between MDT members and patients about safe sexual practices for reducing the risk of bleeds (and potentially treatment costs). She is dedicated to a collaborative approach to improving care services for patients with bleeding disorders.
Paul is a clinical specialist physiotherapist at the Katharine Dormandy Haemophilia Centre at the Royal Free Hospital in London. He completed his undergraduate degree at the University of Ulster in Belfast in 2000, and his Master’s degree in Advanced Physiotherapy at King’s College London in 2009. He is a member of the Musculoskeletal Association of Chartered Physiotherapists. His clinical interests are management of chronic musculoskeletal pain in haemophilia and the use of exercise as a rehabilitation tool, manual therapy and patient reported outcomes assessment.
Jamie is a health economist by background, with expertise in practical and technical applications of the discipline across industries. He has worked with a range of organisations across the public, private and third sectors, including EC and EU and numerous charitable organisations.
Dawn Prideaux De Lacy
Dawn is the Chief Operating Officer of GRAE Capital Partners and has over 30 years’ experience in global operations and administration management within Investment Banking and Asset Management. She started her career at the Bank of England and also spent time with ANZ bank as an auditor in Asia and Europe. At GRAE, she is responsible for the Firm’s Compliance, Finance, IT and Operations and managing the outsourced service providers.
Liz has extensive experience in human resources and business administration and works for the Stroke Association in an estates and facilities role on business continuity and service delivery. She has been active in local haemophilia groups for over 27 years and from a personal perspective, understands the lifelong relationship between healthcare professionals and people with a bleeding disorder. She is a former trustee of the Haemophilia Society and held the post of chair for 4 years, the first female chair in its current history.
Stephanie is a clinical specialist physiotherapist at the Oxford Haemophilia and Thrombosis Centre, based at the Churchill Hospital in Oxford. She completed her undergraduate training at the University of Birmingham in 1992, and a Master’s degree at Southampton University in Clinical and Health Research in 2019. Her clinical interests are in how we can promote increased physical activity in persons with haemophilia and also how we manage the comorbidities of ageing, together with which are the most useful outcomes measures to use.