A New Model of Patient Centered Advocacy

Not too far in our near-distant past, modern medicine was born. It was born in part from a lineage of scientific inquiry that emerged from great Renaissance thinkers, evolution of the germ theory of disease, the development of public health, and the increase of systematic symptom observation as a means of diagnosis. As a result, modern medicine has largely focused on curing the disease– focusing on the illness, the pathogen, and the tumor, instead of on the person, the human, the being.

Over the last few decades, cancer patient advocacy in the United States has led to advocate groups gaining significant influence over policymakers, researchers, and health care providers and has become a critical part of the shift in the health care paradigm from illness-centered to patient-centered care, where patients and families are more actively participating in their care and in the creation of services and policies. And it’s about time.

In many other countries, cancer advocacy is a more novel concept, especially in low and middle income countries, where there remains a dearth of infrastructure to address cancer, and it the physical, emotional, and practical needs of patients are not being fully met. We know that patient advocacy can improve access to treatment, raise awareness of the value of prevention, and ensure that patient viewpoints are integrated into planning and policy.

With our partners at American Cancer Society, LIVESTRONG developed an international patient advocacy framework from 2009–2013 through implementation of two pilot projects in South Africa and Japan. Our advocacy experts created a series of trainings and tools to build the capacity of local NGOs and patients to plan and implement forums for people affected by cancer to highlight key cancer issues from the patient’s perspective and create and disseminate a national call to action with the goal of shifting the policy environment to respond to patient needs.

LIVESTRONG Foundation is excited to share our recently published International Patient Advocacy Framework (IPAF) which is the result of nearly five years of international research and practice.

Our results in South Africa and Japan illustrate that the framework is globally relevant and could be adapted and implemented in low- and middle-income countries to amplify patient voices in the policy-making process, increase grassroots mobilization, and improve health systems and infrastructure through addressing patient needs. With the dominant paradigm of global health in developing countries — which has previously focused on HIV/AIDS, maternal and child health, tuberculosis, and malaria — shifting to adapt to the burgeoning NCD burden, effective patient-centered advocacy frameworks are critical to the success of NCD control. Our hope is to see the International Patient Advocacy Framework (IPAF) used across the globe to empower patients to share their experiences and influence the delivery of cancer care towards a patient-centered approach.

Check out the full article the Journal of Global Oncology here!

Rebekkah Schear Director of Mission Delivery, LIVESTRONG

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