How can case managers advocate for rare disease patients to improve healthcare outcomes?

1 Define rare disease

A rare disease is any condition that affects fewer than 200,000 people in the United States, or less than one in 2,000 people in the European Union. There are over 7,000 known rare diseases, and many of them are genetic, chronic, and life-threatening. Rare disease patients often experience delays in diagnosis, misdiagnosis, lack of effective therapies, and high costs of care.

2 Identify patient needs

As a case manager, you can help rare disease patients by identifying their specific needs and preferences, and by conducting a comprehensive assessment of their medical, psychosocial, and financial situation. You can also use tools such as the Patient Activation Measure (PAM) or the Patient Reported Outcomes Measurement Information System (PROMIS) to measure their level of engagement and satisfaction with their care.

3 Connect with resources

One of the most important roles of a case manager is to connect rare disease patients with relevant resources and services that can improve their quality of life and reduce their burden of disease. These may include clinical trials, patient registries, advocacy groups, support networks, educational materials, and financial assistance programs. You can also collaborate with other healthcare professionals, such as genetic counselors, pharmacists, and social workers, to provide multidisciplinary care.

4 Educate and empower

Another way to advocate for rare disease patients is to educate and empower them to take an active role in their own care and decision-making. You can do this by providing them with accurate and reliable information about their condition, treatment options, and rights. You can also encourage them to participate in patient advocacy initiatives, such as awareness campaigns, policy changes, and research projects, that can benefit the rare disease community.

6 Evaluate and improve

Finally, you can advocate for rare disease patients by evaluating and improving your case management practice and outcomes. You can use quality indicators, such as patient satisfaction, adherence, clinical outcomes, and cost-effectiveness, to measure the impact of your case management interventions. You can also seek feedback from your patients, their families, and your colleagues, and use evidence-based guidelines, standards, and best practices to enhance your case management skills and knowledge.

7 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?