Patient and Family Storytelling — PART II
In follow up to my blog post from last week about patient and family storytelling in healthcare, I wanted to share some great insights from the online/social media patient advisor community on this subject.
The importance of ‘experiential knowledge’ cannot be lost when it comes to quality improvement in healthcare settings, as well as in policy/program design and decision making. We can create as many measures as we like. We can design QIPs and go through patient safety reviews (often without patients involved?). We can develop accountability frameworks with ‘measureable outcomes’. However, if we are not speaking with and learning from those who are living and have lived the healthcare system in real time, then we (all of us) are missing out on how we can truly improve the healthcare system and focus on what is truly important.
How do we apply stories to the way we do healthcare? Is it out of our hands as patients and families, or do we have an important role to play? (HT Donald Lepp via Twitter).
My answer: We do have a role to play. We have a role in setting expectations that our stories will be heard, that our experiences (good and bad) will be respected and valued, and that there will be a commitment from our healthcare leaders and decision makers (i.e. doctors, nurses, administrators, patient relations, homecare leaders, LHIN Boards and CEOs, public policy makers, Ministry officials) to take action and to let us know where action has been taken.
I call this 360 communication. Some others might call this actionable feedback. Others might say, closing the identified gaps and fixing the system for the better. Whatever it is, it includes setting the expectation that after sharing our stories we’ll hear about how our experiences and the knowledge we shared was/was not used, and made (or did not make) a difference.
What about including patient experience and patient/family storytelling in medical schools, at professional conferences and meetings, and at ‘grand rounds’ in hospitals? (HT Donna Thompson via Twitter)
This is something I have asked for often as a patient advisor. I’ve had many opportunities to share our story with 3rd year medical students and nurses, but rarely have I spoken with the more senior staff (residents or staff physicians).
The Patients Included Charter seeks to embed the idea of patient and family presence at conferences where our care, program and policy design, and yes…even patient engagement is being discussed and deliberated — often without patients and families present.
The question is why? We know these stories, experiences and knowledge have significant impact.
Why not start your LHIN, hospital, long term care board meeting with a patient and family story? Why not start your conference with a patient/family story?
Here’s a place to start:
“We teach first year medical students to collect an in depth patient narrative that they present to their continuity group with an advocacy plan that they must take responsibility for.” (Dr.Jim Plews-Ogan via Twitter)
Keep the conversation going. Patient and family stories can be inspirational and reflective. Let’s help our more senior physicians have access to patient and family stories so that they can learn from us as well.
Here are some questions to help guide your discussion following a patient/family story:
What issues were identified in the story? Are the issues isolated or widespread? How does current policy/strategic priorities address these issues? (HT Donald Lepp via Twitter)
Patient and family stories are rich resources for teaching and continuing to support the patient-physician connection.
Talk with us and ask us questions. (HT Mindy McHardy via Twitter).
“The worse thing to have happen is to invite a patient of family to speak and then usher them out of the room as soon as they finish their story. A huge missed opportunity. The story is part of the discussion.” (Donald Lepp via Twitter)
We have so much to share. You have so much to learn from us.
Patient and family storytelling is important to ensure services and programs that healthcare bureaucracies, in Ontario and beyond, design understand the impact for patients and families. We can help you design it better so that it works as you intended it to. We can help you reflect on what might not be working so that it can be improved.
Patient stories, we can help strengthen the healthcare system in Canada from the inside out.
