Greetings from the IHI Forum - the Institute for Healthcare Improvement's annual conference for those providers, researchers and hospital personnel who work toward improving the delivery of healthcare to patients all over the world.
Wait a minute... providers, researchers and hospital personnel... and patient experts and activists.
That's new. Patient experts and activists... who and what are they?
They (we) are people who have devoted our careers to improving patient safety, patient education, and in general, patient outcomes -- those aspects of being a patient that aren't medical; rather they are the aspects that either improve the medical, or protect patients from problems caused by the system.
What makes someone become a patient activist? With few exceptions, they are people who have lost a loved one to a preventable medical error. Many have lost a child through surgery gone bad, or hospital care gone bad. Others have lost a spouse or a parent to infections like MRSA or C Diff or bedsores. Among the exceptions is Hollywood actress Alicia Cole, who acquired necrotizing fasciitis (flesh eating bacteria) while hospitalized (she suffered herself, but did not lose a loved one), E-patient Dave deBronkart, who is a good example of someone who got the best of healthcare, Regina Holliday, whose husband died after a horrific experience from a lack of medical records availability - and me - I had a traumatic experience, for sure, but didn't lose a loved one to the system.
Some have spent 10 or more years teaching other patients and caregivers to stay safe when they access healthcare. Others work on national or state government policies that will improve the system. Some aren't sure yet what direction they want to take - they have recently lost someone or suffered problems themselves and just know they want to be sure others don't suffer as they did.
In general, we are the most outraged and vocal about the 500+ Americans who die each day from preventable medical errors. We are the lay people who are working to reduce or eliminate those deaths.
Why did IHI bring us to the Forum? Because they have recognized the contribution patients can make, particularly those patients who have dedicated their lives to protecting others. For so long, patients have been invisible. To their credit, IHI has brought us some visibility.
I wish I could tell you we have accomplished something of huge note... but we haven't - yet. But it's most definitely a start. We patients have begun to show up on the radar, perhaps not as invisible as we were just days ago.
Are you a patient activist? Have you done something that helps others get better care than they might otherwise have gotten?
Tell us more about your work....
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Learn more ~ or join the conversation!
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Photo: Regina Holliday paints her representation of the patient activist discussions at the IHI. At the heart of the painting is the concept of partnership among patients, caregivers and providers. Find Regina's explanation of the symbolism in her painting at her blog.
500 people did each day from medical care they’ve received?
How does this compare to how many people supposedly die each day from a lack of health insurance?
Once you obtain that number, what would you say is the bigger crisis?
The National Decubitus Foundation (decubitus.org) has published the NDF Prevention Protocol (Advances in Skin & Wound Care, July 2008) describing how hospitals can stop causing bedsores. The IHI should take note.