Empowering voices: The strategic role of advocacy in cancer care

September 16, 2024

healthcaretoday, National Cancer Society Malaysia, Cancer Care Advocacy, health advocacy, patient empowerment, healthcare policy, cancer treatment, public health, health equity, stakeholder engagement, support and awareness, policy, quality of life, palliative care, patient support, cancer survivorship, research funding, healthcare access, advocacy skills, holistic care, patient rights, empower communities, cancer survivor, cancer care,

Advocacy is the strategic process of managing and sharing knowledge to influence policies and practices that affect lives. Its goal is to create meaningful, evidence-based changes that impact individuals and communities. Advocacy plays a pivotal role in mobilizing efforts to address issues, particularly in health care, where it can drive improvements in treatment, access, and public awareness. This is especially true for cancer care, where patient voices need to be amplified to foster better health outcomes.

“There are several key points to consider when talking about advocacy,” states Dr Feisul Idzwan Mustapha (pix), Public Health Specialist and Director of the Perak State Health Department, at the National Cancer Congress Malaysia, during his session titled "Difficult conversations: How to advocate for people living with cancer." He continues, “First, advocacy must be intentional. It's about more than just raising awareness; it’s about changing behaviors, beliefs, and ultimately influencing the policies that shape lives.”

The need for advocacy in cancer care
Advocacy is vital for many reasons, especially in cancer care. It ensures that individuals living with cancer receive the care, support, and resources they need. But what exactly are we advocating for?

Dr Feisul outlines several key areas where advocacy is critical:

Improving access to care and treatment: Ensuring equitable access to quality healthcare services.
Support and awareness: Raising awareness about emotional, psychological, and medical support options for both patients and caregivers.
Research and funding: Promoting research participation and securing funding for advancements in cancer treatments.
Policy changes and legal rights: Advocating for improved policies and legal protections for cancer patients.
Quality of life: Ensuring holistic care, including access to palliative care for those nearing the end of life.
Education and empowerment: Empowering patients and communities with knowledge, support, and advocacy tools.

Dr Feisul’s personal connection to cancer advocacy adds a poignant touch to his work. “My mother has survived breast cancer twice, my sister was diagnosed young but survived, and sadly, my maternal aunt passed away from the disease. These experiences drive my commitment to advocating for better cancer care,” he shares.

Points for advocacy in cancer care
Cancer care extends across a continuum, from prevention and early detection to treatment, rehabilitation, and palliative care. Advocacy efforts can be focused at various stages of this continuum. Some key advocacy areas include:

Access to care and treatment: Ensuring patients receive timely and adequate care.
Support and awareness: Increasing understanding of available support systems.
Research and funding: Driving advancements through clinical trials and funding initiatives.
Policy change and legal protections: Advocating for laws that protect patients' rights.
Quality of life improvements: Focusing on palliative and holistic care.
Education and empowerment: Equipping communities and patients with the knowledge to advocate for themselves.

Kingdon’s multiple streams model for advocacy
Dr Feisul references 'Kingdon’s multiple stream model' to explain how advocacy works at different levels of influence. This model highlights three interconnected streams that contribute to successful advocacy efforts:

Problem stream: Identifying the issue—what is the burden of the disease?
Policy stream: Proposing viable solutions to address the issue.
Politics stream: Engaging with decision-makers and stakeholders to support the proposed solutions.

Even when the problem is well defined, without the right political commitment, it can be difficult to implement change. Advocacy ensures that all streams align to create a "window of opportunity" for policy shifts.

Engaging stakeholders in cancer advocacy
Successful advocacy requires understanding and engaging with the right stakeholders—individuals or groups who can affect or be affected by policy changes. Stakeholders in the healthcare system include:

Decision-makers: Those with the formal authority to enact policy changes.
Influencers: Individuals or groups who can shape the opinions and actions of decision-makers.

A comprehensive stakeholder analysis is crucial to identify key players and assess their needs, influence, and positions. As Dr Feisul explains, “Politics isn't just about those at the top; it also includes the constituents at the bottom. Politicians respond to the concerns of their constituents, so advocacy must be a top-down and bottom-up effort.”

Mapping stakeholders: The influence-interest grid
To ensure effective advocacy, it is important to categorize stakeholders based on their level of influence and interest:

Key players: Stakeholders with high influence and interest who must be closely managed.
Meet their needs: Engage and consult with stakeholders who have a high interest but moderate influence.
Keep informed: Communicate with those who may have lower influence but are still valuable allies.
Low priority: Stakeholders with minimal interest or influence should still be monitored but require less engagement.

By mapping stakeholders, advocates can tailor their approach and engage both supporters and skeptics effectively. Dr Feisul emphasizes that advocacy isn’t just about winning over friends. “It’s important to keep your enemies close. Understand the motivations of those who may oppose you and engage them differently.”

Crafting a compelling advocacy message
Advocacy efforts rely on clear, compelling communication. An effective message is:

Brief and focused
Solution-oriented
Supported by evidence
Tailored to the decision-maker’s interests
Presented in non-technical language
Optimistic and hopeful
Concludes with a specific call to action

According to Dr Feisul, a well-structured advocacy message includes four key elements:

Defining the issue
Explaining why the decision-maker should care
Presenting a solution
Requesting specific actions

The essential skills of an advocate
Advocacy is a skill that takes time to develop. Several important qualities for advocates, include:

Passion and commitment
Strong communication skills—both written and verbal
Teamwork
Negotiation and leadership abilities
Understanding of protocols and behavior within specific contexts
Ability to create and translate evidence into persuasive messages

Dr Feisul concludes that advocacy is a crucial skill for healthcare providers and professionals working with cancer patients. It requires dedication, emotional intelligence, and the ability to understand stakeholders’ needs and motivations.

Driving change in cancer care
To bring about real change, it’s important to acknowledge that decisions are not made solely based on evidence. Emotions, political factors, and timing play a large role in decision-making processes. Creating a "window of opportunity" involves aligning the problem, policy, and political streams.

“For cancer patients, it’s not just about raising their issues but understanding the wider context,” explains Dr Feisul. “Decision-makers are human too, and it’s vital to address their concerns while advocating for cancer care improvements.”

Advocacy in cancer care is more than a set of skills—it’s a strategic process that requires empathy, negotiation, and a deep understanding of both the issues and the stakeholders involved. By mobilizing communities, creating compelling messages, and engaging stakeholders effectively, we can make lasting changes that improve the lives of people living with cancer.