We are excited to share the news of our first-ever article being published in the international, peer-reviewed journal, Haemophilia, on the topic of patient education and gene therapy.
The multi-authored, open-access editorial, in the framework of a letter to the Editor, is titled: “Addressing patient education priorities in the era of gene therapy for haemophilia: towards evidence-informed shared decision-making”.
On The Pulse Director, Laurence Woollard, had the privilege to co-author alongside Dr Rich Gorman, a previous contributor with our special feature on World Haemophilia Day 2020, who resides as a research fellow in bioethics at the Brighton and Sussex Medical School. Laurence and Rich were joined by their peer and American colleague, Dr Dakota J. Rosenfelt, a pharmacist by trade and post-doctoral fellow in malignant haematology through Rutgers University, New Jersey.
All are highly experienced, passionate advocates and patient leaders in the haemophilia community from both sides of the Atlantic.
On the topic and reasoning of the article, Laurence said:
“Patient education is an integral component of haemophilia comprehensive care and is defined as a key priority at a global level through the World Federation of Hemophilia (WFH).1 Yet, for people living with haemophilia to realise the benefits of health education that today’s healthcare environment demands, a high level of patient participation and engagement is essential. This is particularly relevant in an era of current and emerging, novel treatment options for haemophilia and the possibility of complex, experimental approaches like gene therapy becoming a viable option in the very near future.
Engendering patient support is, and will continue to be, critical for the successful adoption of these new technologies and there is an increased need to empower the whole community to understand more about these exciting developments. The three of us, with our experience on the ground, wanted to make a call to action for a cohesive, structured and inclusive approach to education, whereby we can ensure everyone has an equal opportunity to become informed and participate in treatment decision-making for improved health outcomes.”
Rich and Dakota commented:
“We know that creating a culture of shared decision-making is an increasingly important part of realising patient-centred care. Empowering people affected by haemophilia to have an active voice in conversations and decisions about their care requires reimagining practices of patient education and making space for the community to identify, set and lead on priorities. Rather than simply giving patients more and more information all the time, it means providing patients the tools to ask questions and co-produce knowledge about novel treatment possibilities.”
Rich Gorman, BSc, PhD, FRGS
“Patients have been told for quite some time about the importance of “owning their condition” and urged to take a proactive stance in, not only their treatment and treatment decisions, but how they go about obtaining the information necessary to take action. The paradigm shift of care into yet another new realm of treatment possibility is a rallying call in itself that simply states, “The time is now, no more waiting!”
Dakota J. Rosenfelt, PharmD, RPh
The publication is available to read online here.
This marks an important milestone in the maturity and evolution of On The Pulse as we seek to add a credible, alternative voice to the debate on the promotion and adoption of innovative patient education strategies and approaches to meet the needs of the time.
Haemophilia is the Official Journal of the World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD) and Hemostasis & Thrombosis Research Society (HTRS).
Founded in 1993, Haemophilia is an important multi-disciplinary, global journal dedicated to information exchange about the comprehensive care of haemophilia and other inherited bleeding disorders.
For more information and to access the latest issue, please visit the journal’s website here.
On The Pulse
- Srivastava A, et al. Haemophilia 2020;26(S6):1-158. DOI: 10.1111/hae.14046