6 Types of Patient Stories We Need to Hear More About

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I hope that patient stories that I tell here can really make a contribution to helping healthcare match what really matters to patients. That means that I’d like to tell stories that have been invisible or bear continuing exposure, for health care systems to improve.

Here is a draft list of 6 types of stories—and I am open to suggestions—for the kind of stories that we ought to hear more about.

1.    We need to hear more from people who are isolated because of their medical condition, or because the healthcare system is not hospitable to them. We need to understand why we isolate them, and see whether we can change that. You guessed it: I believe in diversity and stimulation. I want our healthcare system to treat them like individuals, not like some category.

2.    I’d like to tell more about medical error stories that don’t blame workers or the process, so much as focus on ways patients feel objectified, when involving them might yield far better outcomes.

3.    Given the economy—which is not getting better for many (housing, jobs, access to insurance and care remain problematic), we need to hear a lot more about the impact of these factors on health and sickness, bankruptcy, housing, and a whole lot more.

4.    Clinical trials are considered one of the best ways to advance science-based medicine. Yet many people have reservations about enrolling, and for many trials, enrollment is slow. How do you view participating in clinical trials? Could they be designed better? Do you feel patient protections are in place?

5.    Funding and cutting programs make a big difference in people’s health. Do you know of a good program that is being cut? Or do you see an opportunity to invest in an innovative program that could really improve health?

6.    There is a sixth: the story I don’t even know needs to be told but is waiting to surprise me.

This list is rudimentary, put together this holiday weekend. As I said, please make suggestions in the comments or send me a discrete email to patientpov “at” gmail “dot”com. I respect patient privacy.
Happy Memorial Day to you!

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2 Responses to 6 Types of Patient Stories We Need to Hear More About

  1. Susan Cain says:

    I am the Significant Other of an Alzheimer’s patient with a Harvard Ph.D. The best thing we ever did was enroll in a Drug Trial. He received an MRI, PET scan and Lumbar Puncture, plus psychological testing to confirm that his Dementia was truly Alzheimer’s and not caused by something else – all at no cost to us. (Most insurance either won’t pay for these tests or charge high co-pays.) I was concerned that he has some symptoms common to Parkinson’s, which was ruled out in the testing.He is treated with the utmost respect, as am I. All our questions are addressed. Since it is a Double-blind protocol, we have no idea what he is getting. I would strongly recommend joining a study for anyone who is eligible. Our only expense is for travel – about an hour away by car.

  2. Jean Oliver says:

    In your effort to find what may help patients get what they want in healthcare I would suggest exploring the privacy factor, especially as it relates to patients getting respect when it comes to modesty issues. There are a few excellent blogs, one moderated by a Dr. Joel Sherman and another by Dr. Maurice Bernstein, that have a huge number of stories about individuals who have had terrible experiences in this respect and how it has affected their willingness to seek care. The major point seems to be that many patients, both male and female, would prefer same gender providers when they are faced with an intimate procedure/exam. This option in many, if not most, cases is not available. I think this is a valuable issue to address when it comes to patient centered healthcare.

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