Advocacy organisations as partners in pre-eclampsia progress: patient involvement improves outcomes

Abstract

Optimal maternal and neonatal health requires the expertise of maternity-care providers who base their decisions on solid research. Optimal care, however, also requires active patient participation, which is best accomplished through advocacy organisations that represent the perspective of diverse patient populations. Patients who come together under the auspices of a patient advocacy organisation, sometimes called consumer groups, can have a unique and powerful voice to advance the goals (or overcome the inertia) of the healthcare system. For pre-eclampsia, a condition that still carries the burden of no cure and seriously adverse or deadly outcomes, all three components - care providers, researchers and patients - are required to realise progress. In this chapter, we briefly describe the effect of pre-eclampsia on women, discuss the role of patient advocacy organisations, and propose a six-point call to action that can serve as a compass for patients to collaborate with practitioners, investigators, funders, non-governmental organisations, and policy makers on a set of articulated and comprehensive goals.