Collecting real-life high-quality data about the experiences, decisions and perspectives of individuals diagnosed with high LDL-C (low density lipoprotein cholesterol) is the focus of Global Heart Hub’s new multi-national Insights from Patients living with Elevated Cholesterol (IPEC) research initiative.

IPEC is led by Global Heart Hub, with the support of WomenHeart, USA; Lado A Lado Pela Vida, Brazil; hearts4heart, Australia and the cardiovascular patient community. Findings from IPEC have been submitted to key congresses around the world for visibility among decision makers, policy makers and physicians. Supported by the findings from IPEC, the global cardiovascular patient community is positioning itself to take part in future conversations around LDL-C management strategies.

The IPEC data generation program is a pillar of Invisible Nation, Global Heart Hub’s advocacy program created to bring attention to the more than 500 million people worldwide at risk for an ASCVD-related heart attack, stroke or death¹. Check out this page regularly and stay connected to Global Heart Hub social channels (@GlobalHeartHub) to receive fresh information and updates from IPEC.

A Year of Impact – Amplifying the Patient Voice in Cardiovascular Research

As we reflect on 2024, one initiative stands out as a hallmark of progress: Insights from Patients Living with Elevated Cholesterol (IPEC). This groundbreaking, patient-led research initiative is showcasing the power of collaboration to enhance patient outcomes and deepen understanding of lived experiences.

This year, IPEC highlighted the growing recognition of the patient perspective in cardiovascular research, demonstrated by an impressive 100% abstract acceptance rate at leading scientific congresses. It has become clear that patient-led insights are no longer optional—they are essential to driving meaningful change.

IPEC Presented at AHA 2024

Global Heart Hub was thrilled to participate in the American Heart Association (AHA) 2024 Scientific Sessions in November in Chicago, where we presented key findings from the IPEC patient-led research initiative. The poster showcased valuable patient insights on elevated cholesterol, the communication of cardiovascular disease risk and its impact on shared decision-making and adherence in cardiovascular care. This final poster presentation for IPEC in 2024 reached clinicians, researchers, and other stakeholders on an international scale.

IPEC at the SBC Congress (Brazil)

In September, our Global Heart Hub affiliate Instituto Lado a Lado pela Vida had the honour of presenting findings from IPEC (Insights from Patients living with Elevated Cholesterol – Perceptions of Patients Living with Elevated Cholesterol) at the 79th Brazilian Congress of Cardiology (SBC), providing critical insights into the experiences and challenges, directly from patients.

The selection of IPEC to be presented at this prestigious event underscores the importance of patient experience data in shaping discussions about heart health. It emphasizes the value of qualitative insights in improving cardiovascular care and amplifies the need for a patient-centred approach in the ongoing dialogue about heart health in Brazil.

IPEC at the CSANZ Regional Congress (Australia/New Zealand)

In August, our hearts4heart affiliate Tanya Hall presented the poster titled “Policy Targets to Improve Diagnosis and Treatment of High Cholesterol Identified by People Living with High Cholesterol: Results from a Patient-led Study” at the CSANZ 2024 Annual Scientific Meeting. The poster highlighted insights from Australian patients with confirmed high cholesterol who took part in the Insights from Patients living with Elevated Cholesterol (IPEC) research project.

At the event, Tanya spoke about the value of this research initiative: “If we want to empower patients to make informed health decision, education is the pathway to reaching this goal. We have joined forces with community leaders including Global Heart Hub so that we can address the burden of uncontrolled elevated cholesterol and continue conversations with policymakers.”

IPEC at ESC Congress 2024

Global Heart Hub proudly presented an e-poster at ESC’s Congress in London on Global Heart Hub’s patient-led study, Insights from Patients living with Elevated Cholesterol (IPEC). It is a tremendous achievement to have the patient perspective included at such a prestigious international scientific meeting.

The IPEC e-poster focuses on the importance of the first discussion between a patient and their healthcare professional after diagnosis of hypercholesterolemia and how that interaction could help change the course of atherosclerotic cardiovascular disease (#ASCVD), the leading cause of mortality worldwide.

IPEC Presented at EAS 2024

Global Heart Hub was delighted to present an e-poster on insights from the Patients living with Elevated Cholesterol (IPEC) study at this year’s European Atherosclerosis Society Congress from 26-29 May in Lyon, France. This research explores patient experiences with high cholesterol and Atherosclerotic Cardiovascular Disease events.

EAS endorses the important work of the Global Heart Hub in elevating patient voices on a global stage

“The EAS supports the key and important work done by the Global Heart hub, which is bringing the voice of the patients living with cardiovascular disease and high cholesterol to the world stage. It is wonderful to see that their work is being presented in Scientific Arenas such as the EAS annual Congress 2024 in Lyon and elsewhere.

There are three players, the health system, the physicians and the patients that need to come together to improve cardiovascular disease management. The EAS has long supported patient centered advocacy and look forward to seeing what we can achieve with the Global Heart Hub in 2024 and beyond.”

Professor Kausik Ray, President European Atherosclerosis Society Professor of Public Health and Honorary Consultant Cardiologist
Director of Imperial Centre for Cardiovascular Disease Prevention
Deputy Director of the Imperial Clinical Trials Unit, Head of Commercial Trials, Imperial College London, UK

IPEC Presented at ISPOR 2024

Global Heart Hub, with our US Affiliate WomenHeart, were delighted to present a poster, “Understanding the Patient Experience With High Cholesterol in the United States: A Patient-Community-Led Qualitative Study” on May 7 at ISPOR 2024 in Atlanta, GA.

This qualitative, multi-national study explores the experiences of patients with high cholesterol and those who’ve had a cardiovascular event. This is the first phase of our ground-breaking patient-led Insights from Patients Living with Elevated Cholesterol (IPEC) data generation program.

May 8, 2024: “Real-life data highlights need for patient-centered management of unhealthy cholesterol”