The Light Collective Speaks on Advancing Patient Advocacy and Data Rights in Healthcare Technology in “No Aggregation Without Representation” Panel Discussion at Rice University

On October 22, 2024 the Medical Humanities Research Institute (MHRI) at Rice University had the privilege of welcoming leaders from The Light Collective, an advocacy group working in favor of protecting patient data rights in healthcare technology. Their talk was the second in a series of public lectures in MHRI's "Reimagining Technologies of Care: Racial Health Equity and Data Justice" Sawyer Seminar, supported by the Andrew W. Mellon Foundation. A recording of the panel discussion with The Light Collective can be viewed here. 

In light of October’s status as both Breast Cancer Awareness Month and Cybersecurity Month, the speakers participated in a robust panel discussion titled “No Aggregation Without Representation,” discussing their insights and personal health experiences with healthcare technology. Representing a community of patients and advocates, The Light Collective’s mission is to advance patient voices, rights, and interests in a healthcare system that increasingly relies on digital technology. 

The panel discussion opened the conversation on a key issue: the tendency of medical research and healthcare to treat patient data without the patients themselves in mind, detaching it from the real people it represents. The panelists emphasized the need for approaches that respect patients’ lived experiences through more patient-centered policies. 

Panelists’ Background and Advocacy:

The panel consisted of three founding members of The Light Collective, who shared their personal stories and insights:

• Valencia Robinson: A breast cancer survivor and former teacher, Robinson initially hesitated to share her story publicly. As her children grew older, she gained the courage to speak out, inspired by her desire to advocate for others. Now, as a founding member of the Light Collective and Director of Outreach, Robinson advocates for cybersecurity protections for patients.
• Andrea Downing: Using her background in the technology industry in Silicon Valley and as a BRCA1 mutation “previvor,” Downing serves as the President and Co-Founder of the Light Collective. Considering herself an “ethical hacker,” Downing works to create safe online spaces where patients can share their experiences without the risk of exposing their sensitive health information.
• Ashley Dedmon: A Houston native and Vice President of Living Beyond Breast Cancer, Dedmon shared her family history of cancer, which inspired her work in advocating for patient rights for the last two decades. As a doctoral student at the UTHealth School of Public Health, Dedmon continues to push for patient data rights, especially regarding cybersecurity and privacy. 

Data Privacy, Cybersecurity, and Patient Safety Issues

A key focus of the discussion was the intersection of data privacy and patient safety. In the current healthcare system, electronic health records and diagnostic tools store large amounts of protected patient information, thus making them vulnerable to significant cybersecurity breaches. As Dedmon highlighted, even treatments as essential as chemotherapy are managed through diagnostic software, which could be compromised by hackers. 

Outside the healthcare system, patients increasingly generate sensitive health information online through social media posts, online purchase, and searching for knowledge on the web.  Yet none of this health information is protected by HIPAA. These non-protected data have no protections for being used against individuals by employers or insurers.

Thus, the panelists emphasized that with the increasing number of cyberattacks, hospitals and healthcare systems must protect patient data privacy more urgently. This need for more solid protections surrounding data was echoed in a recent survey, showing that 60% of healthcare organizations have been affected by phishing or other cyberattacks. The Light Collective panelists stressed the importance of legal frameworks and secure technology to protect collective digital rights. 

The Power of Community in Patient Advocacy

As all the panelists shared through their personal experiences, patient and caregiver communities play a crucial role in supporting individuals through difficult medical diagnoses, such as breast cancer. With the development of social media, platforms such as Facebook have become popular as a space for patients to share their experiences and resources with others facing similar experiences. 

While providing a sense of connection, social media platforms have also made it easier for companies to scrape patient data and misuse it for commercial reasons. Robinson noted that in some cases, patients have even faced threats to their physical safety due to data leaks, highlighting the urgent need for policies that protect patient privacy in digital healthcare spaces.
They urged policymakers and tech designers alike to listen to patients’ calls for “No Aggregation Without Representation,” a phrase emphasizing the importance of including patient voices and perspectives in decisions on how their data is used. 

Building a Patient-Centered Approach to Health Data Policy

The Light Collective members agreed that meaningful patient engagement in health technology development requires democratic governance—policies that protect patient rights and are free from commercial influences. They pointed to efforts by legislators, such as the recent cybersecurity bill introduced in the U.S. senate to protect HIPAA-covered data, as promising steps forward. In addition to these efforts, The Light Collective continues to push for broader protections and transparency in the use of healthcare data. The group hopes to elevate patient voices within policy discussions, advocating for more robust cybersecurity, transparent data practices, and accountability from hospitals and other healthcare organizations. 

A Call to Action: Protecting Patient Rights and Data Privacy

The Light Collective concluded with a compelling message for the audience: Patient communities can and should challenge and create new policies that are at the service of protecting patients’ autonomy and rights. Patients bring invaluable lived experiences and insights that, if integrated into policy and technology design, could drastically improve healthcare. As Robinson shared about The Light Collective, “it’s miraculous what people can do with passion,” encouraging others in the healthcare technology field to be passionate about incorporating patient-centered data policies–ensuring that innovations in healthcare truly benefit those they are meant to serve.
 

For more information about the MHRI's "Reimagining Technologies of Care: Racial Health Equity and Data Justice" series, including upcoming lectures, please visit mhri.rice.edu/sawyer.

photo credit: Michael Busch