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Patient Driven Solutions to Raising Awareness of FH

by Erik DeAngelis, BS (Medical Student)

We formed a group of patients with familial hypercholesterolemia which met to discuss the challenges of the disease and the importance of increasing awareness and connecting people with FH together.

Rochester, NY Patient Driven

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About this project

The problem we solve:
Familial hypercholesterolemia (FH) is a genetic disease of cholesterol metabolism characterized by very high levels of LDL cholesterol leading to highly premature fatal and non-fatal myocardial infarction and stroke. It affects 1/200 - 1/500 individuals and 1.3 million people in the United States. However, only 10% of those with FH have been properly diagnosed due to limited physician knowledge and experience with the disease. Therefore, these people lack access to reliable data about their condition. Even those who are diagnosed find information about FH limited and difficult to access. Furthermore, there are few ways for those with FH to connect with one another to build support and advocacy networks. The result is thousands of people suffer from this silent disease in isolation and without proper care or access to resources.
About our solution:
By meeting with a group of people with FH, we learned from a patient perspective the most profound challenges of living with the disease as well as its most compelling solutions. We learned that patients with FH desire a means of consolidating resources and establishing a forum to reach out to others who can provide solidarity, comfort, and aid with management of FH. In response, we seek to provide our patients and their family members just this in a streamlined and simple interface in the form of a downloadable app, that could provide them with resources and specialty providers in their nearby area, reliable information educating them on FH and its potential complications, a forum that allows those with FH to reach out and provide support with one another, and a link that allows patients to connect to different social media websites. The goal is to create a medium through which this otherwise scattered group will be able to form a cohesive whole.
Progress to date: At the conclusion of these group meetings we have a pool of patient generated ideas about how to address the challenges of lack of information and lack of connectedness regarding living with FH. Moving forward we would like to create an app that links patients with quality information and to one another allowing them to take control of their own health outcomes.

About Our Team

Erik DeAngelis, BS (Medical Student)
Medical Student, Medical Student
Location: New York
Medical school: University of Rochester School of Medicine
Bio: Erik is currently a third year medical student at the University of Rochester School of Medicine. He graduated summa cum laude from Tufts University in 2013 with a degree in biology.
Title: Creating a Familial Hypercholesterolemia Community

About Team Members

Robert Block
Associate Professor, Division of Epidemiology, Department of Public Health Sciences; Cardiology Division, Department of Medicine; and Center for Community Health, MD, MPH, FACP
Biography: Dr. Block is a board-certified internist and clinical lipidologist and directs the University of Rochester's Clinical Lipidology and LDL Apheresis programs. His clinical, research, and teaching expertise encompass the treatment and prevention of cardiovascular diseases.
Scott McIntosh
Associate Professor of Public Health Sciences, PhD
Biography: Dr. McIntosh has a background in mixed methods research and the development of procedures for examining the impact of interventions and factors influencing behavior change of both clinician and patient populations. His research includes technology assisted behavior change with a special emphasis on smoking cessation interventions.

About Our Company

FH Community Builder
Location: Rochester, New York
Product stage: idea
Sales: Working on it
Employees: 3-5

How We Help Patients

Central to any effort to improve health outcomes is providing patients with the necessary tools and resources they need to lead healthy lives. Only when patients are empowered to take control of their own health and become equal partners in their medical care can meaningful change take place. Our solution is patient inspired and addresses the need for better access to materials about FH and its management as well as to community and peer supports. The use of technology as a medium for disseminating information and connecting people was identified by patients with the condition whose disease burden we aim to lessen as an essential mechanism by which they could empower themselves and others. When given the resources and support mechanisms they need to understand and manage their disease, FH patients are in a better position to lead healthy lives.

Challenge Mission

Mission: Our project aims to improve the health outcomes of patients with FH while furthering a collaborative model of healthcare that promotes the health of all people.
Use of funds: We would like to create an app that links patients with validated resources about FH including research synopses, dietary resources, treatment options and to each other and their community including resources and events nearby. We would use the funds to design, test, and implement our app while continuing to hold focus group meetings to ensure patient needs are met throughout the process.
Intellectual Property Status: N/A
FDA Status: N/A
Personal Message: The University of Rochester emphasizes a biopsychosocial approach to medical care that considers the patient as a whole person. In this spirit, we believe that patients deserve to understand the disease process that is affecting them and have access to community and social supports to help them manage their disease. With your support we can work towards creating a tool that helps achieve this goal.

Supporters

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    05/19/2016 Yu-Ching Chuang - Nurse

    Interested in trying the project.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Interested in mentorship.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Followed the project.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Interested in partnership.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Liked the project.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Interested in piloting the project.

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    05/19/2016 Yu-Ching Chuang - Nurse

    Interested in other factor.

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    05/17/2016 Scott McIntosh - Healthcare Innovator

    Followed the project.

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    05/17/2016 Scott McIntosh - Healthcare Innovator

    Liked the project.

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    05/17/2016 Robert Block - Physician

    Liked the project.

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    05/17/2016 Katherine Manou - Pharmacist

    Followed the project.

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    05/17/2016 Katherine Manou - Pharmacist

    Liked the project.

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    05/10/2016 Erik Erik DeAngelis - Medical Student

    Followed the project.

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    05/10/2016 Erik Erik DeAngelis - Medical Student

    Liked the project.

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likes

4

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Partners

53

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Erik DeAngelis, BS (Medical Student)
Medical Student
Creating a Familial Hypercholesterolemia Community
University of Rochester School of Medicine

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