On November 5th, in the company of leading pharmaceutical companies, healthcare systems, and researchers, we shared the amazing progress the Family Heart Foundation has made in its efforts to save generations of families affected by familial hypercholesterolemia (FH) and elevated Lipoprotein(a), also known as Lp(a). This was presented at the annual Family Heart Foundation Corporate Advisory Council meeting hosted in Chicago during the weekend of the American Heart Association Scientific Sessions
It was an exciting night with fantastic presentations by one of the world’s foremost implementation scientists (Dr. Brian Mittman) and a panel session highlighting the research and pragmatic implementation being used now to close gaps in care.
Having studied healthcare delivery science for over 30 years, I was excited to present in my new role as the Chief Quality Officer for the Family Heart Foundation. I shared current progress made to close gaps in care that prevent families from getting the treatment they need and deserve.
Despite the risks and number of treatments available – screening, diagnosis, and lipid-lowering treatments are collectively being provided to less than 30% of those that need this care.
Less than 30%.
Over the last decade, the Family Heart Foundation has built an understanding of all the steps necessary for a healthcare system to offer their communities the most ideal care. They had a vision for systems to Flag, Identify, Network, and Deliver (FIND) care and prevent early heart disease.
While all the tools are currently available to provide this ideal care, healthcare practitioners are slow to adopt guideline-based care.
One average, it takes 17 years to adopt an evidenced-based care model. But by convening a multi-stakeholder Collaborative Learning Network (CLN) using a proven improvement model, the Family Heart Foundation is changing that timeline for individuals born with FH. CLNs have been used over the last 30 years to accelerate the process of closing gaps in care and improving outcomes.
The goal is to do in years, what normally takes decades.
The Family Heart Foundation is the anchor for the FIND CLN that brings together individuals living with FH, healthcare providers, and systems committed to improving care, along with expert lipid specialists, preventive cardiologists, endocrinologists, genetic counselors, care navigators, implementation scientists, and data analysts. Under the facilitation of the Family Heart Foundation, stakeholders are working together to systematically and pragmatically define, measure, analyze, and improve care in each step, while leveraging FIND FH machine learning to identify undiagnosed individuals.
We are hosting regular learning sessions and action periods in five different healthcare systems (OhioHealth, University of Texas Southwestern, Dartmouth-Health, University of Pennsylvania Medicine, and Emory) to test, measure, and improve our broken care delivery. Through this, we have captured insights and built a toolkit of best practices for the FIND processes.
We are aggregating robust and granular information from health systems across diverse populations to optimize the application of the FIND FH model that brings patients in for screening and appropriate clinical management. Through our five partner healthcare systems, we are informing and changing how healthcare for lipid management is delivered for over 600 specialists and systems.
We are seeing results.
Outreach materials and approaches developed with individuals living with FH and high Lp(a) have resulted in a 6-fold improvement – from less than 10% to over 60% - in individuals contacted to schedule appointments to discuss an FH diagnosis.
We are just beginning to tackle the problems and opportunities in getting individuals with FH to their LDL goal and keeping them there. I am confident that over the next year of this program, we will see similar breakthrough improvements.