At the WFH, we have always believed that patient empowerment can improve the quality of care for people with bleeding disorders across the globe.
So for us, the issue of patient empowerment is no different than that of humanitarian aid, where we needed to create a new universal paradigm to make possible predictable and sustainable aid. A few years ago, it was a notion that was difficult to realize. Yet with many of our partners already aligned with our philosophy and making the point that multi-year donations were possible, we pushed the envelope with the others to change their business models for humanitarian aid donations. And here we are.
Surely we can call on the same levels of collaboration to improve levels of patient empowerment around the world?
not starting from scratch
Patient empowerment is already built into the WFH comprehensive development model, in both theory and practice. It is our cornerstone, with the patient and the patient’s caregivers and family placed squarely in its centre. We carry out our work in collaboration with our national member organizations, so there is never a ‘one-size fits all’ solution to any need that may arise.
Patients are both the recipients and providers of information and education, acting as advocates and leaders within their local communities.
For us, the question isn’t what can we do to empower patients, the question is: what else can we do and with whom? Where can we bring our expertise, our network and our energy to bear so that people with bleeding disorders in both developed and developing countries feel they have the power of choice in the type and manner of health care they receive?
Choices that beget power
The variety of treatment products available today and the arrival of longer-acting medicine for people with hemophilia means patients won’t be confined to one or two or even three options. They and their health care providers will have a choice. And they will have the power to decide how they want to manage their treatment protocol. That was unimaginable fifty years ago.
The younger generation of people with bleeding disorders will be able to make choices that previous generations, my son’s included, could not. And that is their power, with health care practitioners and institutions, governments and their peers in this broad community.
Indeed, I would argue that it is the role of the WFH youth leadership to articulate what patient empowerment means to them, the role they want to play in their health care and how they want to work with their local health care practitioners, institutions and governments.
Because empowerment, like power, is something one takes; it is not something one receives.