No one ever expects to be given the challenge of having multiple medical needs. It is time consuming, exhausting, and gives insight in to a world that most of us would rather not have: that of the U.S. healthcare system. And not just a system, but a very fragmented and broken system which patients and families are forced to figure out on their own, without even a whisper of “good luck!”
Against All Odds
My own experience with multiple medical needs started in my third month of pregnancy. I knew, in my heart, that something was terribly wrong. Call it a mother’s instinct. At 20 weeks gestation, my husband and I came to find that I had low amniotic fluid in which the baby would most likely not survive. In fact, the next day at the specialist’s office we were asked if we even wanted to keep our unborn, yet to us, a beautiful baby girl. With disbelief we confidently said, “If she has a fighting chance, yes, we will keep her!” And this little girl fought, hard. As her parents, we were inundated with medical words, medications, machines, talks about surgeries, multiple organ systems and failures, syndromes, genetics, all within 36 hours of her arrival six months later. And we were told she would most likely die. After an hour of tears and questioning the universe of why this was happening, we pulled ourselves together, and told the doctors that this little girl was not going anywhere. She was going to run, skip, jump, play and make a difference in this world. The wonderful part was, they listened, and everyone got to work. After 12 days in the NICU, a move clear across the country to Cleveland, Ohio so she could be cared for at Rainbow Babies and Children’s Hospital, multiple hospitalizations, and 10 surgeries and procedures, our little girl — the one who everyone thought would not survive — is a sassy and happy seven-year-old girl.
Knowing What to Ask, What to Look For
But there is something that I didn’t realize, or even recognize in the chaos of hospitalizations, medications, surgeries, and a long and traumatic NICU stay: I was blessed, fortunate, and lucky. Many may wonder, how is somebody lucky to have a child with so many medical needs? It all came together in slow motion… I grew up in a household where I had a parent in healthcare, I was taught how to advocate for my own health care and safety, to look for labels on labs and medications, what questions to ask. I was trained and coached. What was really happening was that I was being prepared for my daughter my entire life. I had tools, skills and knew how to partner with her care team not to create animosity, but partnership. However, a few weeks after we left the NICU a fear grew, not for my daughter, not for our family, but for other patients and families. Did they know what I knew? Did they know what to ask? Did they know what to look for? What to say? I had to do something…
2011 was a busy year. I started my Masters in Healthcare Administration because I figured, “If you can’t beat ‘em, join ‘em!” I also joined the Rainbow Babies and Children’s Hospital Family Advisory Council, and the CMS Partnership for Patients Campaign’s Patient and Family Engagement Network. More opportunities came, I networked, I created opportunity. As Milton Berle said, “If opportunity doesn’t knock, then build a door.” I began building doors…a lot of doors.
A Path to Safety and Engagement
It was also at this time that I created the ETeam® program. I designed it around the idea of how care teams could help patients and families to be more involved– to teach them about safety and engagement, and why it was important. The tool could create transparency, improve satisfaction, and maybe even save a life. I wanted to reach the public to teach them what I was so fortunate to know. The ETeam is an acronym based off of the ways care teams could help patients and families be involved. I also realized it reflects the expectations that patients and families have, whether we realize it or not, when we come into a healthcare setting.
- Engage and empower me
- Take your time with me
- Explain things to me in words I understand
- Appreciate my situation
- Meet my needs®
Patients and Family Advisory Councils, physicians, nurses, and safety and quality leaders customize communication lists for patients within their organization. These lists are reviewed by health literacy experts, and all staff is trained on how to invite and encourage the patient’s and family’s participation in their care, what patient and family engagement is, and how it can also help the team to reach positive outcomes in safety, quality and experience.
Leadership, Commitment, a Focused Plan
At University Hospitals Case Medical Center, where I am proud and humbled to say I am their first Principal Advisor of Patient and Family Engagement, we have been piloting the ETeam on several units, getting staff and patient and family feedback, and standardizing the approach to create a system-wide practice. The ETeam was embraced openly by their innovative and collaborative senior leadership team, and we are all excited about how the ETeam has the capability to enhance patient and family engagement. In University Hospitals’ priorities of meeting the needs of our patients and families, we have developed a Patient Experience Center, and within it a strategic plan for Patient and Family Engagement.
You see, we knew that our daughter would make a difference in this world. We just didn’t know she would start off by doing it through me. And it has only just begun…
Editor’s Note: You can read more about the impact Chrissie Blackburn is having at University Hospitals Case Medical Center and on the national scene in this week’s Patient Engagement in Action story. You can also learn from her directly in September at the World Congress Patient Engagement Summit in Boston where she’ll be jointly hosting a workshop.
Dear Mrs Blackburn,
Would you be kind enough as to send me a pdf of your article entitled:
“Lily’s Story: STAR Syndrome.”
I do not have online access to the journal.
Our recent work has (modestly) contributed to the understanding of the molecular etiology of STAR syndrome, hence my strong interest for your article. In advance, I thank you very much Sincerely, Pierre Colas