Listening to Patients: Voices from the Underground

You don’t have to look very far to find patients who feel nobody is listening to them these days, even though there is a robust patient empowerment and support community. Yet a wealth of stories are not being told because they may not mesh with the agenda of advocacy or health reform groups. That’s where Patient POV, for point of view, comes in. I plan to solicit stories from patients who feel that they are not being heard. They  may have simmering inside them perspectives on what’s lacking in health care that might hint at how it could be better. Many patients may have helpful suggestions about how healthcare  could be reconfigured to make it more responsive to their needs and help other patients like them. Families and caregivers also have plenty to say.

I hope that by sharing their stories, their accounts can be used to shape care that is truly centered on many diverse patient needs and preferences, rather than the wants and needs of the healthcare system overall, facilities, physicians, or industry partners.

Are there healthcare problems that you think nobody talks about that should be addressed in this blog? Were you surprised by the way a hospital or doctor’s office was organized?  Have you had experience with a condition that people rarely talk about or something that you think could be handled more sensitively?  Let us know in the comments. If the topic you are thinking of takes longer than a paragraph, shoot us an email to patientpov “at” gmail “dot” com.