Originally published in Patients for Patient Safety Canada (PFPSC) Newsletter - SafetyNet (January 2014 | Volume 4, Issue 1):
“The highest courage is to dare to be yourself in the face of adversity. Choosing right over wrong, ethics over convenience, And truth over popularity...these are the choices that measure your life. Travel the path of integrity without looking back, For there is never a wrong time to do the right thing.
In Loving Memory of Justin Micalizzi
5/31/89 - 1/16/01
Bridging People and Places in Pediatrics
By Dale Ann Micalizzi
Founder/Director of Justin’s HOPE Project
PIPSQC Ambassador Lead
In 2001, our 11 year old son, Justin, died following an incision and drainage of a septic ankle. Our lives were shattered and we sought solace among parents who had suffered this unfathomable loss before us. We joined the International Compassionate Friends support group and eventually became co-leaders of a local chapter. Through this work, I partnered with a local organization called, Bridging People and Places and arranged for them to make teddy bears for our support parents’ other children. We wanted the parents to bring them a bit of comfort home from the meetings. It was important for me to help the grieving children who were often left alone when their parents couldn’t handle their own pain. Resources, or safety nets, like I blogged about on the Paediatric International Patient Safety and Quality Community (PIPSQC) website are needed for all members of the family when tragedy strikes. When the support is lacking, the situation becomes worse for the individuals. My blog post is entitled, Partnering with Parents to Save Children’s Lives.
When it was determined that Justin died from preventable medical errors, I founded Justin’s HOPE Project at the Task Force for Global Health and then established an ongoing partnership with the Institute for Healthcare Improvement (IHI) where we’ve awarded nineteen IHI Forum Scholarships so far in Justin’s memory since 2008. The outstanding applicants are clinicians working with vulnerable pediatric populations. My speaking engagement honorariums and donations assist these efforts. Connecting these students to the thought leaders in patient safety was also important to me so more collaboration was necessary. The beneficiaries will bring this knowledge with them throughout their careers and the world will be safer and kinder. That is my goal.
Justin's HOPE Project focuses on HOPE: Healthcare Openness, Professionalism and Excellence. Through the efforts of Justin's HOPE, the Task Force provides education, research and reform toward quality and compassion in healthcare delivery. The vision for this project is to promote quality, safe, compassionate, patient and family centered healthcare and resolution of issues around medical errors through open communication. "The Task Force has nurtured a series of initiatives that support the ideal of global health equity, i.e. reaching the underserved with the necessary resources and commitment for healthy communities.”
Justin’s HOPE Project is proud to announce our new short film on patient safety along with our chapter, co-authored with Dr. Marie M. Bismark of Australia, for Pediatric Clinics of North America, The Heart of Health Care: Parents’ Perspectives on Patient Safety. These new resources are already being used as educational tools for multiple medical schools and pediatric hospitals, internationally.
I met the PIPSQC group in 2010, when I was co-chair of the IHI Forum and was later asked to present with these international pediatricians and join the PIPSQC faculty. You may ask what PIPSQC is.
PIPSQC is an informal, international collaborative of professionals who share a passion for patient safety and quality in paediatrics, and who interact together across organizational and geographic boundaries, to advance learning and improvements in these areas.
This complex adaptive system emerged in 2006 as a result of a pre-symposium invitational gathering before SickKids’ Second Annual Paediatric Patient Safety Symposium. Those invited represented four countries on three continents. We recognized that our patient safety concerns were universal. The results of the roundtable discussion can be found in the Paediatric Patient Safety International Collaborative document. At dinner that night, the Paediatric International Patient Safety and Quality Collaborative was officially formalized and PIPSQC was born.
PIPSQC Brochure for distribution
PIPSQC Patient & Family Resources
My education and training is focused on child welfare and development so this group fit in nicely with my mission. I created the PIPSQC Ambassadors with the help of Dr. Genevieve Paisley, the PIPSQC physician web content editor, where we selected a group of parents that we met along the way who had shown valor and kindness following the injury or death of their children. They had gotten past the anger and were ready to work with providers. We later added those physicians who saw the value in assisting and working with families as vital.
We invite our Ambassadors to write blog posts, apply for health conferences and introduce themselves to healthcare organizations where they could easily connect or bridge the healthcare community with a nice partnership where progress could be made by writing papers together, joining hospital boards, presenting or just bonding to save lives. I’m proud of all of them and we continue to add more Ambassadors, increasing the group internationally, uniting us even further with our pediatric safety focus. We work toward positive collaboration, instead of competition, which can often kill programs and spirits in all aspects of patient safety. Please visit our wonderful, caring team and invite them to assist your facility. They have a passion like no other and can move mountains with your help.
An inspiring collaboration among Children’s Hospitals across the US can be found at the Ohio Children’s Hospitals’ Solutions for Patient Safety (OCHSPS) which many PIPSQC physicians are members of. Their success in prevention, learning from errors and saving lives is underway.
Together with Dr. Hannah Zhu, we're creating a series of surveys that will be released soon. We intended to work on the safety net mentioned above, and how families could be helped by hospitals following trauma but as we discussed the content with the caregivers and siblings involved or harmed by the incidents, we needed to include their perspective in the research so we're developing surveys to obtain a global picture of how we can do better as a team by hearing all voices.
We’re excited to partner with more like-minded organizations who are dedicated to children and families as we truly believe that we can do better in partnerships.
Photo of PIPSQC Faculty at the PIPSQC Minicourse (M23) “Protecting Children from Harm” at the IHI 25th Annual National Forum (December 9, 2013)
Photo of Dale Ann Micalizzi and her 2013 Scholarship Winners
1. The Compassionate Friends
2. Bridging People and Places
3. Paediatric International Patient Safety and Quality Community (PIPSQC)
4. Partnering with Parents to Save Children’s Lives
5. Justin's HOPE Project
6. Justin's HOPE short film
7. The Heart of Healthcare: Parents' Perspectives on Patient Safety
8. PIPSQC Brochure
9. PIPSQC Patient & Family Resources
10. PIPSQC Ambassadors
11. Ohio Children’s Hospitals’ Solutions for Patient Safety (OCHSPS)