Champions of Change Blog

Data liberación: the Path to Precision Medicine

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 We must reconsider this and other outdated practices that are obstacles to precision medicine.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. 

Grassroots Services to the Underserved Communities

I am inspired and encouraged by the many great leaders in this country and to be selected to be a White House Champion of Change, I am honored.  Breast Cancer is an issue that has plaque United States for years and I am glad that research is on-going.

I became a breast cancer survivor and advocate in 1998, and began speaking at schools, churches and community events in an effort to educate women about the significance of early detection through yearly mammograms and breast self-exams.  I believe it is important to educate women of all ages so they are well-equipped with information.

Many proposals for research studies and clinical trials are approved and conducted each year to find a cure or improve treatment for breast cancer.  There are also many educational programs that are present to the community.   All of the effort is extremely beneficial because there are over 2.8 million women living after treatment with breast cancer. 

Recent statistic’s indicated that the breast cancer death rates are in decline. Statistics are somewhat confusing, because it is good news that death rates are in decline, however, the decline has been faster for women who have easy access to screening.  Women from poor areas now have the highest death rate from breast cancer.  Why?  Because they have less access to screening and treatment.  Some other statistic from cancer.org are, “African American women are underrepresented in clinical trials and thus the influence of race on treatment and survival is unknown”;  “African American women have a 41 percent higher death rate then Caucasian women despite a lower incidence rate”.  And as the CDC.gov states, “the five-year breast cancer survival rate for African American women is 69 percent, whereas it is 84 percent for Caucasian women”

This is why Sisters Network of Central New Jersey (SNCNJ), the organization I co-founded, is so important.  SNCNJ is unique because we are a chapter of the first and only African American survivor run breast cancer survivorship organization.  All of SNCNJ project advertising and programs are geared toward African American’s using specific colors, language, ethnicity themes and outreach workers and volunteers.  To increase mammogram screening we use a “Shop Rite” card as an incentive once the woman completes her mammogram.  “Out of the box” thinking has to be something of value of ours.  To increase yearly clinical examinations, SNCNJ host a free Annual Health Screening for the community in partnership with local medical professionals equip with cutting-edge Breast Health information; also included are total cholesterol & HDL’s, Blood Sugar and Pressure and Lifestyle Education because these are also problematic in the community. SNCNJ heard firsthand the need that is in the community and developed the Breast Cancer Assistant Program which provides financial assistance to underserved and qualified women.  In 2009, SNCNJ partnered with The New Jersey Commission on Cancer Research to publish “The Courage to Trust a Clinical Trial”, specifically for African American women.

There is a cancer burden in the United States and I believe it starts with the underserved and African American women.  African American women must participate in more clinical trials and I believe that educational programs that address their culture would help build trust in clinical trials.  Proposals for research should begin prior to diagnoses; once a woman is diagnosed she inherits the 41 percent death rate and 69 percent survival rate.  I will continue to advocate and give women hope – with hope all things are possible.

Dorothy Reed is the co-founder/president of Sisters Network of Central New Jersey, committed to increasing attention to breast cancer in the African American community.