Money management and career planning are considered life skills (but the skill that shapes health self-advocacy) deserves the same status. Without it, care suffers. My family member was recovering from surgery, facing medication safety concerns, severe anxiety, and the need for constant care. At the same time, I was managing my own records and preventive health. Like so many women, I had become the family’s chief health executive, carrying responsibilities that stretched across every part of care. Overwhelmed is one word that comes to mind.

Health self-advocacy is the practice of taking the lead in a personal health care plan. It often begins with an immediate need (such as navigating recovery after surgery) and grows as health circumstances evolve. Over time, it becomes a lifelong skill set grounded in eight core pillars:

The eight pillars of health self-advocacy

• Mindset and foundations: Approach care as a partnership, even when the path is uncertain.
• Health literacy: Strengthen the ability to evaluate reliable information and weigh risks and benefits.
• Records and documentation: Maintain a Personal Health Record, family history, and essential documents such as advance directives and proxies.
• Visit preparation: Approach each appointment with an agenda, clear questions, and a follow-up plan.
• Care team building: Assemble trusted providers, pharmacists, navigators, and supportive peers.
• Treatment and adherence: Follow care plans, monitor progress, and incorporate supportive therapies.
• Financial navigation: Manage bills, insurance claims, appeals, and assistance resources.
• Reflection and growth: Assess what worked, set new priorities, and expand advocacy skills over time.

Not every pillar is built at once; patients and caregivers begin with what matters most and expand as needs evolve. Today, resources are scattered, and KFF reports that one in four Americans avoids care because the system feels too complex. The need for self-advocacy skills is no longer optional; it is urgent.

The current state of health self-advocacy

Health self-advocacy is a learned skill set that evolves over time: preparing, speaking up, partnering in decisions, and following through. These skills matter: Engaged patients have better outcomes, fewer hospitalizations, and higher satisfaction (AHRQ, Health Affairs, and Health Services Research). This is not just a patient problem. Unprepared visits drag on, information is missed or gets lost, and errors multiply as clinicians feel the strain, and caregivers are left scrambling to fill the gaps.

The case for condition-specific advocacy tools: why it matters

Most advocacy resources are scattered or tied to a single condition or stage of care. Many patients live in limbo when their symptoms defy easy categorization. They are left to navigate uncertainty, repeated referrals, and delayed diagnoses alone, precisely when guidance and support are most needed.

A comprehensive hub can close this gap by providing patients and caregivers with accessible, reliable guidance at every stage of care. Such a resource does more than support individuals; it strengthens the clinician-patient partnership, restores trust in the system, reduces unnecessary costs, and leads to measurable improvements in outcomes. Everyone involved in care delivery benefits.

Condition-agnostic tools matter across the full spectrum of care—from prevention to urgent needs, chronic management, and end-of-life planning. A trusted, transparent hub equips patients step-by-step, meeting them where they are, while clinicians also benefit: A BMC study found that organized patients cut history-taking time by nearly a third, strengthening rapport rather than weakening it.

A blueprint for building skills

Trust is built through an open review process, patient- and clinician-reviewed updates, and evidence-based information. A trusted hub could save patients and caregivers from having to start from scratch, providing advocates with a stronger foundation, and helping clinicians partner with prepared patients.

Condition-specific groups, advocates, coaches, and peer communities also benefit from a shared foundation of advocacy skills. This foundational hub lets them focus on research, treatment, and connection while strengthening their specialized support. The aim is not replacement but reinforcement, enabling each community to adapt resources to unique needs.

Examples of tools and resources include visit prep checklists, personal health record guides, insurance navigation tools, clinician-facing guides, and digital health tools like symptom trackers or remote monitoring solutions, e.g., wearable devices. Some already exist, such as plain-language visit preparation guides and personal health record templates developed by the United States of Healthcare. These are not the whole answer, but they are foundational for scaling a hub.

Health self-advocacy as an essential life skill

Health self-advocacy is not optional; it touches every aspect of health and life. Like financial literacy or career readiness, it is a core life skill that everyone can learn and use. System reform will take years, but self-advocacy tools can be implemented today. A comprehensive, trusted hub that unites existing resources into condition-agnostic tools would make this possible, helping people build the skills to navigate care more effectively.

The results are tangible:

• Community: stronger networks, less isolation
• Confidence: greater sense of control
• Visits: more efficient and effective encounters
• Clarity: fewer errors and missed steps
• Partnership: stronger clinician–patient relationships

Like financial literacy, health self-advocacy is a life skill we cannot and should not live without. It can improve every aspect of health care.

Alan P. Feren is an otolaryngologist. Joyce Griggs is a patient advocate.