I’ve told a few stories about my medical care as of late, but my voice is one of many. Scores of patients and their families have experienced medical errors, medication errors, doctor mal/mis-treatment, over treatment, hospital acquired infections and more. For many of us reparations cannot be made. But we can make change and try to ensure that patients who come after us receive better care. To do this, we must share our stories.
It’s not easy to share a story. These stories are full of sensitive, personal information. And we wonder – who will listen? will our voices be heard? will our stories be dismissed? will we be judged for speaking out?
I have personally been judged by my stories – including a recent incident where I spoke about a specific provider at a conference as an example of how to encourage patients rather demeaning us when we’re not perfect. After telling my story I was asked to apologize to the entire conference. I refused and was told I’ll never be invited back. They told me I was “unprofessional” for sharing my true story.
I have spoken out and found no one listening. In years past, I’ve always written to the hospital about errors I experienced while in their care. Each time I was given a polite form letter reply telling me they notified the appropriate personnel – but nothing changed. For instance, I told a hospital for years that it’s gluten free menu wasn’t in fact gluten free, and yet when I returned again, they kept the same menus and providers still didn’t know much about celiac disease.
My voice has been dismissed. Several times I’ve told the hospital and doctors that Levemir is not a substitute for Lantus when administering long acting insulin. Still the hospital automatically makes the decision to administer a drug that is not appropriate for type 1 diabetics. Perhaps they think, what could she know? She’s not a doctor or pharmacist. Patient’s voices are too often dismissed when they are seeking medical care, especially those who know more than their doctors about their own disease.
But the patient voice is becoming stronger and more well respected. This is in large part due to epatients who are speaking out across the country – invited to conferences to provide a patient prospective, wearing our patient stories in The Walking Gallery, interacting on Twitter, writing books, and not allowing others to ignore our desire to help change our medical system and medical care.
Now there are 2 new tools that will help us share our stories. The Patient Voice Institute was announced just last week at HX Refractored. PVI hopes to:
- Work with patient organizations and individuals to amplify the patient voice in ways that are comprehensive, consistent and true; developed by, with and for people who are patients, family members and consumers.
- Create connections across patient groups, patients and families, and health care organizations, associations and others to support all sides in developing true partnerships.
- Provides evidence-based principles that reflect what patients want and need, training and matchmaking for patients and organizations who want to work together, and online promotion programs to encourage patient engagement in the policy direction, operations, and daily interactions of health care.
As they say – “We are a powerful collective” when we can come together to share our stories.
Another tool is part of the Consumer Union’s Safe Patient Project. I’ve had the pleasure to know Lisa McGiffert, Daniela Nunez, Greg Foster, and Jon Lebkowsky at the Consumer Union for the past 2 years and watched as this project has blossomed. The idea is to gather, curate, and use stories to effect change through a platform called Stori.es. And on the Safe Patient Project website, you can start to tell your stories and read those of others who have shared. In sharing our stories we can start to develop accountability for those places who ignore, dismiss or judge those who speak up.
When I have been ignored and dismissed, and especially when judged I have often thought that perhaps it would have been better to say nothing at all. But the truth is, I know that if I say nothing, nothing will change. I feel it is my responsibility to share my story even when the story makes people uncomfortable or means I make myself very vulnerable. People like Ron Satjia, Regina Holliday, Scott Strange, ePatient Dave, AfternoonNapper, Amy Tenderich and many others have reminded me this week how important and necessary our voices are to making change. It’s not easy, but by sharing our stories, we can change the world.
It is your very essence.
It is the sound of your own breath.
An idea in your head that you believe in.
It is frightenly powerful.
– Donna Downey