Know your heart(y) advocacy groups and information sources

A recent survey by the Agency for Healthcare Research and Quality (AHRQ) showed 46% of Americans have basic or below basic level of health literacy. I am sure that many countries in the world have the same health literacy problems.

When in doubt, where do you turn to for health information? To your health care provider, of course.

However, for those who would like to do some home study and read more, I have prepared a list of website resources by medical professionals and advocacy groups. These sites provide invaluable information for medical professionals, patients, and consumers.

In the US:

American Heart Association (AHA)

The AHA is probably the oldest and most well-known heart health advocacy group in the world. It has its headquarters in Dallas, Texas and has nine affiliate offices in the US and its territories.

It all started with a group of doctors and social workers who formed the Association for the Prevention and Relief of Heart Disease in 1915 in New York City. That was a time when there was limited information about heart diseases. Similar groups were formed all over the US. Several people saw a need for national platform through which medical professionals can exchange knowledge and research findings.

The AHA was formally founded by 6 cardiologists in 1924.

“Their goal was to improve public and medical awareness during a time of “almost unbelievable ignorance about heart disease.”

The association has since grown in size, supported by medical and non-medical members and volunteers. It has continued to be an advocate for the American public, especially children.

The main driving force of AHA is to provide “credible heart disease and stroke information for effective prevention and treatment.”

AHA regularly organizes health awareness programs and fund raising drives. In addition, it uses the Internet and all the tools it can offer to disseminate information, increase awareness, and step up on prevention of cardiovascular disease. Check out some of their programs:

HeartHub for Patients

Go Red for Women Heart Style Guide

FIT Kids Photo Petition

Sudden Cardiac Arrest Association (SCAA)

The SCAA is a non-profit organization founded in 2005 and is singularly focused on sudden cardiac arrest.

SCAA’s mission is “to prevent loss of life from Sudden Cardiac Arrest.” Its vision is to eliminate preventable deaths from Sudden Cardiac Arrest by 2020.

One of SCAA’s major projects is broadening the deployment of automated external defibrillators (AEDs), when it affiliated the Iowa advocacy group AED Access for All.

Heart Rhythm Society (HRS) and Heart Rhythm Foundation (HRF)

Founded in 1979, HRS is a society of over 4800 medical professionals with the main focus on cardiac arrhythmia or heart rhythm disorders. Its motto is “restoring the rhythm of life.” It works closely with the Heart Rhythm Foundation (HRF). HRF’s mission is

“to enhance the prevention and treatment of cardiac rhythm disorders by supporting the research, education and advocacy efforts of the Heart Rhythm Society.”

Sudden Cardiac Arrest Foundation (SCAF)

SCAF’s mission is to prevent death and disability from sudden cardiac arrest and increase awareness. Its specific aims are:

Increase the rate of bystander CPR from 20% to 30% within 5 years

Double the use of AEDs outside the hospital within 5 years (increase from <5% to 10%)

Double the rate of survival to hospital discharge within 10 years (increase from 7% to 14%)

In order to reach these goals, the foundation offers the following training as part of their education program:

• On-site AED Program
• Online AED Program

American Stroke Association (ASA)

ASA is a division of the AHA and is focusing primarily on stroke awareness and prevention. Its specific goal is “to reduce stroke and risk by 25 percent by 2010.”

Together with AHA, ASA regularly organizes events and educational programs locally. You can check what’s happening near you at local.strokeassociation.org/. One of ASA’s stroke awareness programs is Power To End Stroke, a campaign directed at African Americans, the ethnic group in the US with the highest risk for stroke.

Outside the US:

Heart and Stroke Foundation (HSF) of Canada

HSF Canada is a volunteer-based health charity organization consisting of 10 provincial foundations. It works towards

“eliminating heart disease and stroke and reducing their impact through the advancement of research and its application, the promotion of healthy living and advocacy.”

British Heart Foundation (BHF)

BHF aims for “a world in which people do not die prematurely of heart disease.” And they want to achieve this by research, prevention drives, and fighting for quality health care and support for heart patients.

Children’s Heart Association (CHA)

CHA was formerly called The Association for Children with Heart Disorders and advocates for the welfare of children with congenital heart disease. It runs support groups for family and friends of these young cardiac patients.

Other advocacy groups for children are Children’s Heart Federation, and HeartLine.

There are many more advocacy groups out there and I am sorry that I cannot cover all of them. All with the common aim of helping heart patients, promoting awareness and stepping up prevention. They are an invaluable source of information for health professionals as well as for patients. Most of these groups are dependent on volunteers and donations to go on with their work.

If you have the time and the money to share, this is the way to go – volunteer or donate (or both) to a heart(y) group of your choice and help save lives.