Champions of Change Blog
- Posted byon July 24, 2015 at 7:25 PM EDT
Today, the White House honored nine “DACAmented Teachers” — extraordinary educators with Deferred Action for Childhood Arrivals (DACA) status — as Champions of Change.
Watch the full event below:
- Posted byon July 23, 2015 at 1:00 PM EDT
Earlier this week, I watched the live-stream of the White House’s celebration of the 25th anniversary of the Americans with Disabilities Act (ADA). Live-streaming is a form of access that allows individuals to experience events, even if they are many miles away from D.C.
Listening to the President’s remarks and hearing him recognize the members of Congress, advocates, and young leaders -- I wondered what diverse stories they had to tell about how the ADA impacted their lives.
- Posted byon July 22, 2015 at 11:31 AM EDT
On Monday, I was pleased to be able to welcome twelve people of faith as they were honored as White House “Champions of Change” for their efforts in protecting our environment and communities from the effects of climate change. These Champions have demonstrated clear leadership across the United States and around the world through their grassroots efforts to green their communities and educate others on the moral and social justice implications of climate change.
The Champions shared personal reflections on their efforts in advance of the event:
- Posted byon July 21, 2015 at 6:09 PM EDT
Ed. note: This is cross-posted on the U.S. Department of Transportation's blog. See the original post here.
Major trends are shaping the future of our transportation systems. Our population is growing and aging. Our legacy transit systems need more attention every day. Our roads and runways face increasing congestion.
America's way of life and continued economic growth depend on meeting these challenges, so this October, DOT and the White House Office of Public Engagement will host a Champions of Change event focused on “Beyond Traffic: Innovators in Transportation for the Future.”
I invite you to help us recognize the champions who are making it all possible.
- Posted byon July 16, 2015 at 1:26 PM EDT
America needs the full talent of all our people. Maintaining our nation’s competitive advantage means we can’t afford to leave anyone out or behind. Our success as a country depends on ensuring that all young people have a chance to reach their full potential.
President Obama created the White House Council on Women and Girls in the first months of his Presidency to ensure that every agency, department and office in the Federal Government takes into account the needs and aspirations of women and girls in every aspect of their work. We have made much progress as a country, but there is still much work to do to close opportunity gaps and barriers to success. Many of these challenges disproportionately affect women and girls.
In November, 2014, the Council on Women and Girls released a report, “Women and Girls of Color: Addressing Challenges and Expanding Opportunity.” The Council is working to ensure that government policies appropriately consider these challenges and persistent opportunity gaps faced by too many girls and women from under-represented communities to ensure that everyone who aspires to get ahead has a chance to succeed. The President also recognizes that innovation comes from communities and is often sponsored by young people who notice problems and work with their schools, youth organizations, and even in start-ups to craft new solutions and fresh perspectives.
In September, the White House will recognize young women who are already leading and inspiring their communities as advocates, peer-mentors, artists, innovators, and entrepreneurs as Champions of Change.
- Posted byon July 9, 2015 at 7:10 PM EDT
On January 30, 2015, I watched with excitement the live video stream in which President Barack Obama announced a $215 million investment to expand our country’s Precision Medicine Initiative. The National Institutes of Health (NIH) defines precision medicine as an “approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.”
As a person living with familial hypertrophic cardiomyopathy (HCM), a genetic cardiovascular disease that puts me at risk for sudden cardiac death, the president’s announcement was welcome news. HCM affects an estimated one in 500 people and is the most common genetic heart condition in the United States. It is also the leading cause of sudden cardiac death in people under the age of 35.
New precision medicine approaches to treat HCM are already underway. These unprecedented treatments hold the promise of stopping—and potentially even reversing—the course of the disease. This gives me great hope for the future.
But if we hope to usher in a new era of personalized medicine, we must first liberate our health data. This has been the focus of my advocacy.
Ever since receiving an implantable cardioverter-defibrillator (ICD), a small electronic device designed to deliver a shock to the heart in the event of a deadly arrhythmia, I have sought to liberate the data collected by my implant. As helpful as it is to a physician, the data collected by the ICD is mostly useful to the patient living with the condition, if he hopes to engage in his care and take responsibility for his health.
However, under the current care model, data from implanted cardiac devices (such as pacemakers and ICDs) is inaccessible to patients.
The Health Insurance Portability and Accountability Act (HIPAA) gives patients the right to access their medical records. But while patients can obtain copies of the reports generated from the ICD, the electronic data remains siloed away and out of their reach. This forces patients to take a passive role in their care and discourages engagement. We must reconsider this and other outdated practices that are obstacles to precision medicine.
During President Obama’s announcement, he also stated that in order for precision medicine to realize its full potential, we must create tools that give patients the ability to get involved. “We want every American, ultimately, to be able to securely access and analyze their own health data so that they can make the best decisions for themselves and for their families,” said President Obama. It was music to my ears.
I took the President’s words as a call to free our health data so we can use it to improve our health and that of our fellow Americans—“data liberacíon” as Todd Park, former Chief Technology Officer of the United States, would say.
As patients, we must secure access to our health data, have the opportunity to learn from it, and the freedom to share it with whomever we wish, including donating it to research for the public good. Freeing the data will also enable patient activation and promote individual responsibility, and it will clear our path to precision medicine. As Americans, we deserve this.
Hugo Campos is a data liberation advocate and leader in the e-patient movement.
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