by Dr. Maya R. Cummings, Valencia Robinson, Jill Holdren & Andrea Downing

It is both appropriate and regrettable that October is Breast Cancer Awareness Month and Cybersecurity Awareness Month. As breast cancer previvors and survivors, collaborators with online patient communities, and founders of an organization representing the rights and voices of patients in healthcare technology, we are committed to using technology to educate, support, and empower as many breast cancer patients as possible so they can have the knowledge and tools to beat cancer and live their best lives.

Members of The Light Collective Board of Directors after presenting at Defcon

And while we are heartened that technology helps us share information about early detection, proper treatment, and quality self-care, our experience has shown us that technology is also undermining the safety, security, health and well-being of our patient community. Sadly, we have come to the conclusion that it is not possible to be effective patient advocates in today’s world without also being vigilant about health privacy, digital rights, and cybersecurity.

We originally embraced technology to foster an online community of sharing and caring between people with similar health concerns but soon learned that technology features presented as supposedly secure on prominent social media platforms and apps were instead exposing data about our members in alarming ways. We discovered that through a variety of common practices such as the selling and repackaging of data and the tracking of individuals making medical appointments online, our efforts to keep our communities safe were being sabotaged.

As the great disrupter, there is no doubt that technology has transformed how we work, access news and entertainment, shop, and interact with other human beings, including our dearest loved ones. And while the efficiencies created by technology have enriched us in many ways, society cannot ignore the very real dangers posed by tech-enabled threats and the harm they pose to vulnerable population groups. That is why we support the enactment of smart federal regulations and laws that increase consumer protections and privacy while strengthening accountability for those who refuse to comply.

So, we had to prioritize data privacy in an effort to protect the identities and personal medical information of our members online. This required us to get up to speed on the tools, practices, and language of the tech and big data industries so that we could better understand how their obfuscations, inconsistencies and gaps threatened patient protections. We also became more knowledgeable about algorithms because of how they were being used to target our network with life-threatening misinformation, such as bogus cancer “cures.”

We now view the entire menu of cybersecurity threats as being dangerous to the health and wellbeing of our patient community. Breast cancer survivors and other recovering patients need peace and restorative practices in order to focus on wellness and regain their health. The deep anxiety and fear that accompanies identity theft and other online scams creates conditions that are incompatible with a healthy recovery. In fact, the stress of having sensitive information stolen and dealing with the ramifications of financial fraud on top of costly and personally draining healthcare treatments can worsen health outcomes and contribute to unnecessary mental, emotional and physical health complications. Further, there is a critical link between cybersecurity and access to good knowledge in the breast cancer community.

Our serious concerns about the exploitative nature of the online ecosystem and its impact on patient health has led us to innovate once again. We will soon be launching a cybersecurity academy for all online users but with a special focus on patient communities seeking to protect their health information and their peace of mind.

In this double header awareness month we celebrate the fact that breast cancer diagnosis does not have to be a death sentence but we mourn the seeming lackluster commitment to protect the health and safety of patients using the internet to save their lives. In order to give breast cancer and other patients the support they deserve, cybersecurity and data privacy in all forms should be essential components of our 21st century digital rights as well as the growing movement to establish a third generation internet offering greater utility and protections for all people. 

Andrea Downing, Jill Holdren, Valencia Robinson are co-founders of The Light Collective, an organization representing the rights, interests and voice of patient communities in healthcare technology. Dr. Maya was previously Stage 0 and serves as a strategic advisor to The Light Collective.