1.F. Workshop: The barriers to effective hypertension care: a focus on the patient's journey
Authors:   Organised by: Centre for Global Chronic Conditions (UK),   Chair persons: Dina Balabanova - UK, Martin McKee - UK
Published: October 2020

Abstract
Millions of people across the world depend on health systems that simply do not work. They struggle to find someone who can help and, when they do, can face catastrophic bills for often substandard care. But we fail to listen to those whose needs, desires, and expectations are most unmet. We assume their understanding of health and illness is the same as ours and we ignore the coping strategies developed over years that they use to overcome the barriers that those who design health systems place in their way. They live their lives unseen and unheard by those who make the decisions that will determine whether they live or die.
This workshop explores issues that arise when researchers actively engage with disadvantaged populations. It reports our experiences from the RESPOND project (Responsive and Equitable Health Systems - Partnership for Non-Communicable Diseases), working with disadvantaged communities in Malaysia and the Philippines to view the health system from the perspective of people whose health depends on a long-term relationship with it. We use a mixed methods approach, involving household surveys, in-depth interviews and digital diaries, where participants use mobile phones to record their experiences of living with chronic conditions and seeking care for it.
The aim of this workshop is to demonstrate why it is important to listen to those in disadvantaged populations, in order to understand the barriers they face and the ways that they seek to overcome them as they seek care for a chronic disorder. We will illustrate this by achieving five objectives: To show why we need to look beyond the biomedical approach to illness;To recognise the many different journeys that patients follow;To understand the economic consequences of the choices that they make;To describe the theoretical and technical innovations developed as part of the RESPOND project to do this; andTo illustrate how bringing such insights together can be used to implement equitable health system change.
The workshop will be chaired and moderated by Dina Balabanova and Martin McKee, two globally recognised leaders researching chronic conditions and health system reforms in low- and middle-income countries. The first three presentations will introduce people living with chronic conditions from the study communities, and will examine the challenges they face, their options and the choices they make to treat it. All five presentations, but particularly the remaining two, will describe the theoretical and technical innovations developed as part of the RESPOND project used to capture the voices and lived experiences of disadvantaged populations so that they may be better represented in the planning of health systems and services. The remaining 30 minutes will be devoted to guided interactive discussion with the audience on how we are using this people-centred evidence to implement change in each country, and how these approaches may be applied in other settings.

Key messages
Designing effective and responsive health systems that leave no one behind must account for the lived experiences of all beneficiaries, including those groups whose voices often go unheard. We present evidence from Malaysia and the Philippines from studies that used innovative methods to capture the lived experiences of disadvantaged populations seeking care for chronic conditions.