From Awareness to Action: Access with Urgency / by David Driscoll

As with any hard problem, awareness is a necessary first step toward resolution. But awareness, in and of itself, doesn’t change outcomes. As an example, despite the fact that an entire month is dedicated to Breast Cancer Awareness, metastatic breast cancer still took the lives of almost 3,500 people in October.

And lung cancer took the lives of over 13,000 men and women in the same month.

In fact, by the numbers, cancer will kill 1670 people in the next 24 hours, well on the way of taking the lives of 609,640 people by the end of 2018.

National Breast Cancer Awareness Month (NBCAM) was established in 1985, and, for the past 33 years, we have collectively become aware of the prevalence of breast cancer. And yet, in the past three decades, the incidence of the disease has not decreased.

We take some comfort in the fabulous statistics on 5-year and 10-year survival rates but, let’s be honest, when someone is diagnosed at age 30, a 5 or 10-year survival curve isn’t adequate.

According to the National Institute of Health (NIH), the most common type of cancer is breast cancer, with 268,670 new cases expected in the United States alone in 2018. The next most common cancers are lung cancer and prostate cancer, with 234,030 and 164,690 new cases predicted in 2018 respectively, with far worse long-term survival rates.

It’s a big problem.

It’s a hard problem.

We need to focus on not only improving treatment options and outcomes for individuals already diagnosed but also on identifying causal relationships and reducing risk factors across the general populous. We need to move from reactive to proactive.

We need data.

The lack of comprehensive data on cancer stymies our collective ability to understand it – and take concrete steps to eradicate it. 

If only we had data.

Data could look something like the 1.7 MILLION new cases of cancer diagnosed in this country alone that could be queried for patterns. 

Data could look like the health, treatment and responses of over 16 MILLION cancer survivors living in the United States that could be analyzed. 

The real tragedy is that this data already EXISTS – but it is locked behind firewalls and false pretense.

Interoperability, in my lifetime, is not a likely option.

There are too many egos and six and seven figure salaries involved to expect that electronic data systems, academic research facilities and healthcare systems are suddenly going to share, what is if them, revenue generating information freely for the purposes of research.

But it is NOT hyperbole to say health data portability will save lives.

Individuals already have the right to access their own health data, but removing barriers to access is key. Once each person has control over their comprehensive and complete health data, they are then able to easily donate to research organizations focused on accelerating discoveries.

The true value of personal health data is often in the story it tells or foretells. With access to our own story, we can not only direct our personal health care but also add another piece to the collective cancer puzzle. In my mind, solving this puzzle is the equivalent of a Cancer Takedown.

I hope you enjoyed your month of awareness. Next month, consider painting your world “pearl” for the lung cancer awareness or purple for pancreatic cancer awareness. But really, it may be time to put on all the ribbons and move on to more concrete steps. Regardless of the color of ribbon you don, you now know that cancer will kill over 1,600 people in the next 24 hours.

In other words, it’s way past time to move on from awareness to action and urgency is key.

-Stacey Tinianov

Stacey Tinianov is a breast cancer survivor and cancer community advocate. Despite following all the "cancer prevention" rules, Stacey was diagnosed with breast cancer six weeks after celebrating her 40th birthday and four months after her mother's breast cancer diagnosis. Since her diagnosis and treatment, she has become a vocal advocate for patient empowerment via health data access, shared decision making, collaborative education and community building. She is an active member of NCCS Cancer Policy Advocacy Team, board member of Bay Area Young Survivors, advisor for Camp Kesem SCU and President's Cancer Panel participant. She lives in Santa Clara, CA with her husband and two teenagers and can always be found on Twitter as @coffeemommy.