Standing Up for Your Health

Self-Advocacy for Patients with Bone Marrow Failure Diseases

What is Standing Up for Your Health?

Standing Up For Your Health means being a strong self-advocate and an empowered patient. It means taking a more active role in your care to ensure you or your loved one receive the best care and treatment available.

Standing Up For Your Health is also a program created to help people with bone marrow failure diseases and their families develop the skills necessary to ensure they receive high quality care. It includes an integrated set of tools, learning experiences, materials and resources for you to examine, evaluate, and engage with, all with the goal of helping you become a more effective advocate for your own healthcare and a more powerful patient.

As we developed Standing Up For Your Health, our goal was to discover what empowered patients and strong self-advocates do that leads them to consistently receive high quality care. We began by interviewing patients with bone marrow failure diseases. Next, we looked at what the research reported about effective self-advocacy skills. We also talked with hematologists, oncologists, nurse specialists, and family members of patients to get their perspective on skills needed for good health advocacy. Finally, we pooled what we had learned into teachable blocks - the Five Pillars of Standing Up for Your Health.

Why is self-advocacy important?

  • Self-advocacy helps you get high-quality care.High quality care means getting the right care at the right time delivered by the right healthcare professional for you.
  • Self-advocacy helps you feel in control. At times you may feel like your disease is running your life. Standing up for your health can give you back a sense of control. When you stand up for your health, you can get the information you need to make informed choices about your medical treatment and your healthcare providers.
  • Self-advocacy helps you get the support you need. When you stand up for your health, you ask for help from family, friends, and others. Their support can help you cope with your disease.

Important Definitions:

Self-Advocacy: Speaking out about your need, small or large, in an effort to get help to meet that need. It is both a "mindset" and a set of skills you can learn.

Powerful Patient: An empowered patient who educates themselves about their condition, advocates for their needs, and retains control of key decisions about their care.

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