The Patient Voice Podcast
Our aim at Patient Voice Initiative is to ensure patient voices are seen, heard and valued in the Australian health system. But what is the patient voice and why is it important?Join us as we explore real experiences of health and healthcare through the people who most depend on it and how these stories can help us build better care for all.The podcast is hosted by the Patient Voice Initiative Chair and patient advocate, Jessica Bean, which means it is an opportunity to hear patients in discussion with another patient, rather than responding to questions from someone who does not live with the daily experience of being a patient.
The Patient Voice Podcast
Agnes Nsofwa and her advocacy for sickle cell patients
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The Patient Voice Initiative
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Season 1
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Episode 4
After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to.
Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.