You can’t be well-empowered if you hear advice wrong. That’s why in a participatory relationship, an essential skill is accurate handoff of information.
The Foundation for Informed Medical Decision Making (FIMDM), catchily pronounced “fimdim,” has been working for years to improve patients’ knowledge of options and alternatives. In [the September 20th] Boston Globe Liz Cooney talks with people from FIMDM about the issue. An excerpt:
What doctors explain and what patients understand might be two very different things, recent research suggests.
Ideally, patients talk with their doctors about the pros and cons of a particular treatment, weighing the risks and benefits, exploring alternatives — including doing nothing — and then come to a conclusion. That’s the goal of the informed consent process, best known by the paperwork patients sign at the end saying they heard doctors describe what they may be getting into.
A Boston non-profit, FIMDM is the force behind Gary Schwitzer’s excellent Health News Review service, which analyzes health news in the media, teaching e-patients and policy people to sift the gold from the garbage.
*This blog post was originally published at e-Patients.net*
“Between the Internet and all the data insurance companies and the government collect on doctors, you’d think it would be a lot easier than it used to be to find a good one. But it’s not.”
The “Running A Hospital” blog has another discussion of dealing with medical error. This time, the hospital has opened up an error of its own (a “wrong side” surgery) for examination by the Open School of the Institute for Healthcare Improvement (IHI).
Sample comments:
— From IHI’s Jim Conway: “Our systems are too complex to expect merely extraordinary people to perform perfectly 100 percent of the time. We as leaders must put in place systems that support great practice by people who suffer from being human and will make mistakes.”
— From a patient who had two surgical errors in ten months: “After years of suffering through our incredibly brutal tort(ure) system I finally had the chance to talk to the surgeon. The most meaningful words he spoke were the descriptions of how badly he suffered also from the event we shared in that OR. Finally I was not alone!”
As we’ve often said, participatory medicine brings a new kind of partnership between patient and caregiver. Neither denial nor a Wall of Silence (famous book) has any place in a healthy relationship. It breaks my heart to think of the good lives that are ruined by our cultural inability to deal with honest errors in complex situations.
Yes, as Linda Kenney of MITSS mentions in a comment, some employees (in any industry) are reckless and must be weeded out. That too can be a denial issue. But first, we need open discussion.
*This blog post was originally published at e-Patients.net*
Now three of his friends have written essays about this important issue:
We who’ve worked on it hope it will provoke thought about how healthcare is changing because of what e-patients can contribute, empowered as individuals and enabled by the Internet. To start that process, we’re publishing the introduction.
Three friends and mentors generously offered introductory essays. These essays they have little to do with my story, and everything to do with howe-patients can help heal healthcare:
I love this — a website that could’ve ONLY been created by cancer patients. From ThinkAboutYourLife.org:
Find empowerment: Anything you can do to feel like you are taking control of your illness and treatment will help you. Think About Your Life was developed by cancer survivors. We have used the tools on this website in our own experiences, and we hope to inspire you do the same.
This website provides easy-to-use tools for each stage of the cancer journey to help you:
Process your thoughts and feelings: Elizabeth shared the “Good Day, Bad Day” tool with her family to tell them how they could help her throughout treatment.
Take control and make decisions: Amanda used her “One Page Profile” with her doctor to discuss the impact of treatment on her life.
Think about the “what now” and the “what next”: The “Hopes & Fears” tool helped Susan think about the next few months of her life after treatment.
I learned about the site from its creator, Amanda George, who commented on a recent post about person-centered health. Hot diggety. Don’t you just love how the Internet lets us connect with each other and share ideas?
It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…
I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…
I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…
When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…
I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…
