When does a patient’s personal experience intersect with the successful delivery of treatment? Is it at the start of receiving care? Is it after treatment has been received?
People who live with hemophilia or other inherited bleeding disorders have had to learn, from an early age, how to adapt to life with their condition. As with other chronic conditions, life with an inherited bleeding disorder often translates into a unique expertise for each individual patient.
Healthcare professionals within our community have recognized this far earlier than many of their colleagues working with other chronic diseases and conditions. This has been an invaluable experience for the global bleeding disorders community, especially as we head into a new era of care and treatment.
We see this strong partnership each time patient organizations, such as World Federation of Hemophilia (WFH) national member organizations (NMOs), advocate for improved delivery of care and treatment. The WFH brings healthcare professionals and patients together regularly through its healthcare development programs, during its national and regional trainings, with its support for capacity building programs and workshops, and within the development of advocacy initiatives.
This is invaluable for both healthcare professionals and patients, as both their perspectives intersect throughout the lifespan of the delivery of care and treatment. Together, they are in a stronger position to assess and evaluate how changes within their own country’s healthcare systems would be impacted by changing economic realities and shifts in policies. In all our development activities, we build a winning coalition made up of national governmental bodies, health care professionals, patient group leaders, people with bleeding disorders, and our volunteers.
This July, the WFH 2016 World Congress will continue to be the leading international meeting for the global inherited bleeding disorders community. The strength of our Congress is the delivery of the latest medical and multidisciplinary developments to both healthcare professionals and patients along with their families.
During the upcoming Congress, we are proud to present the plenary presentation to be given by Vincent Dumez, M. Sc., Co-director, Office of Collaboration and Patient Partnership, Faculty of Medicine, University of Montreal, Canada. During his plenary “Hemophilia: Model of patient partnership and healthcare”, Vincent will explore how the establishment of successful partnerships between patients, families and healthcare professionals is one of the most effective ways to advocate for change, increasing the capacity to make significant improvements to care processes and patient- and family-related outcomes. This is especially important when working toward improving the quality of life for those living with a chronic condition.
At the start of this column I asked at what point a patient’s personal experience intersects with the successful delivery of treatment. The reality is that their experience is integrally linked throughout the lifetime of this relationship. Not only do patients have a level of expertise of what it is to live with their condition, they also are increasingly educated on the various therapeutic treatments and options available to them. The patient’s expertise and the healthcare professional’s expertise intersect at multiple points throughout the delivery of care and treatment, allowing for the evaluation of the best options available.
We should be proud as a community of this collaboration and recognize that we are at the forefront of how chronic disease care is optimally delivered. The recognition that this unique relationship between patients and healthcare professionals within each of our NMOs will help all of us realize our mission —to improve and sustain care for people with inherited bleeding disorders around the world.