The power of the patient story

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When it comes to healthcare, everybody has a story to tell.

It could be about a really positive experience where excellent care was provided and everything ran on time, or it could be a negative experience that didn’t go the way you expected. It could also be an anecdote about the quality of the hospital food or a quirky roommate.

While some have happy endings, others do not. Sadly, some will never be told because of a patient safety incident that was unnecessary and the patient didn’t survive. Other times, it is their families who are left to tell the story.   For better or for worse, this is the patient experience – a collection of stories highlighting the good, the bad and the ugly, in our health care system.

We are motivated by the latter. They are the stories that give you goose bumps. The stories that can level a room and remind everyone of the importance of health care improvement.

For some, these stories become a powerful tool. They are the foundation of a crusade to put the patient voice back in healthcare and to ensure that others don’t feel the harm and suffering they experienced, when it could have been prevented.

These brave men and women belong to a group called Patients for Patient Safety Canada. They are patients and family members who have suffered unspeakable grief, loss and heartache. What’s so amazing about them is their ability to actually speak about it and turn their tragedies into something positive. Everyone who has ever heard one of these stories can attest to their power.

Patients for Patient Safety Canada’s more than 60 members ensure that health care organizations and systems include the perspective of patients and their families when making decisions and planning safety and quality improvement initiatives.

Every prospective member goes through an interview process to ensure they are at a stage in their healing where they can work with the system to improve patient safety. Patients for Patient Safety Canada is not a support group. Members avoid terms like “negligence” and “incompetence,” and do not assign blame.

Many members have shared their personal stories through videos broadcast during Canada’s Virtual Forum on Patient Safety and Quality Improvement. These narratives reinforce the importance of including the voice of patients and their families in patient safety discussions. Members participate in conferences on patient safety as keynote speakers, panel members, or poster presenters. They also participate in the development of patient safety resources and serve on various committees and working groups.

The importance of this group can’t be overstated. To experience the hardships they have and come out the other end willing to work with the system to better it for the benefit of future patients is nothing short of remarkable.  There is no greater stakeholder in the effort to improve patient safety than patients and their families.

To learn more about Patients for Patient Safety Canada or the possibility of becoming a member, visit www.patientsforpatientsafety.ca.