Listening to Patients: Voices from the Underground

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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.

This entry was posted in A Declaration of Purpose, Listening to patients, Patient stories. Bookmark the permalink.

9 Responses to Listening to Patients: Voices from the Underground

  1. ebbolles says:

    Congratulations on a great idea for a medical blog. Best of luck.

  2. Giving patients voice and solid scientific/medical info strikes me as an excellent idea for a blog. I’m sure it will open up some critical dialogues.

  3. Barbara Sadick says:

    I like the idea of giving patients a voice, but I would also like to see this blog giving a voice to physicians. It’s terrific for individuals to have an outlet to tell their stories, but it would be even more terrific if the dialogue were to include doctors, nurses, and other health care workers. I am not a doctor, but I like the idea of giving doctors a voice also.
    It might be interesting to see where the perception of patients and doctors differ and why. There are many doctors who are not hearing their patients, but there are also many outstanding doctors who do hear their patients. I think that often gets lost.

  4. Laura Newman says:

    Certainly all comers are welcome here. This blog is just starting up. However, I would like to encourage patients to contribute first and foremost because I think that there is a lot of rhetoric about patient-centered care, but we often don’t give people the space too tell their stories. Lets see what patients have to say a little. Sure, there are some great doctors out there and I am not looking to bash them or have others take cheap shots. But I do think patients lack a sounding board and this is a place for that. Also, I think patients might have some very good ideas about ways to restructure patient care for the good of patients like them. That is what I hope to do here.

  5. Hartmut says:

    Came to your site through Yahoo. You know I am signing up to your feed.

  6. Adidas F50 says:

    This is certainly a little something I need to find more information about, many thanks for the blog post.

  7. alan says:

    I like the idea of a blog, I will watch this and the others I monitor by Dr. Sherman and Dr. Bernstein. Quite frankly I feel I have to be an advocate for myself in an environment that protrays itself as being interested in taking care of myself. The caveat is they what to take care of me how they want to and expect me to go along with it. Feeling comfortable is very important to me, the more anxious I get the more I shut down and the less I communicate. There are little things that can help, things like asking me if I have a preference for the gender of a provider or nurse if I am to be exposed, providing me something other than the open back mini skirt they all know we all hate. But rather than ask or listen they just provide what THEY think I should be comfortable with. I feel like it is so much lip service and they are going to do what they want anyway so what does it matter. The mentality that the way to provide me good health care is to provide it for my wife and get her to drag me in. I am an adult male, I can make my own decisions, marketing to women, for women, with the idea it will encourage men partcipate is ludicrous. If you want to know what I want, what I need to feel more like partcipating in healthcare, ask me and then listen, don’t assume.

  8. LOrionmd says:

    Great great idea. D in med school now sending to her! All med students should be reading!

  9. LOrionmd says:

    Just realized that was the best piece of advice I was ever given…. LISTEN to the Patient, they will ‘tell’ you what they have! …. So very true. And there is no published guideline anywhere that acknowledges this!

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