Thought Leadership

Our Data, Our Health, Our Hope: Can the Patient Data Ownership Movement Speed Cures?

Angela Radcliffe

June 13, 2018

Last September I gave a talk at Stanford MedicineX with a call to action to recognize health literacy as a human right. Advancing health literacy, access, and data rights/ownership are foundational elements to unlocking the clinical trial acceleration challenge.  For far to long we have failed to address these root cause issues, instead focusing our energies on marginal improvements to outdated patient recruitment techniques. As one sage colleague shared with me, “We keep expecting apples on the tree, but we never planted the seeds.”  

We must plant the seeds to yield the harvest and the stakes are high: the promise of research has never been greater. Innovations in technology are forcing change at every level, providing the opportunity to bring treatments and cures to market not in increments, but through rapid and exponential evolutions. This is why I joined PulsePoint. After years of trying to solve clinical research challenges, I saw a path forward in PulsePoint’s mission -- to create better health outcomes for the world’s population through data and technology.

Leveraging technology to detect signals in data could help us finally bring research into the real world. For the first time we could look at data on social determinants of health in parallel with phase III trial data or predict an adverse event in a specific population before it happens. This excites me for professional, but also deeply personal reasons.

In 2001, I lost my 21-year-old brother to an undetected genetic heart condition. This moment of crisis led to a transformative moment: My family was connected to a clinical research study aimed at studying the disease. I was forever changed after that clinical research experience. That research has saved many lives in our family, has contributed to a better understanding of the condition, and may someday even lead to a cure. This experience ultimately changed the trajectory of my career and my life as well. I became an evangelist of research, telling my story far and wide.

The promise of Big Data in Research

At the time, big data was just becoming a “thing” and most people in our family didn’t think twice about providing our DNA or participating in the trial. I was surprised one evening when I received a Facebook message from a cousin cautioning me that others in the family might be a bit concerned about publicly revealing a genetic health condition in our family. There was fear that this data could bias our insurance providers or employers. While it didn’t deter me, it did give me pause. It is this tension between the positive impact data can have in transforming healthcare, and the fear of misuse that keeps me up at night. It is my professional mindset vs my human emotion.

Recently the  #My31 movement driven by hu-manity.co crossed my LinkedIn feed. This movement proclaims everyone has the right to legal ownership of their inherent human data as property, and it should be #31 on the list of our human rights. Given I have been similarly proclaiming that health literacy should be the next human right, I was intrigued.  After all, getting the data is the easy part, honoring the true owner of that data is harder.

In the end, I come back to the overwhelming good “big data” provides society. It will allow us to conduct research in the real world, not just on that perfect phase three protocol patient. It will allow us to understand what behaviors and motivators will nudge us toward wellness. It will allow us to append information about social determinants to clinical data sets, revealing a much more complete predictive picture of our health. It is what we call Radical Health Personalization™ at PulsePoint, and it will revolutionize the way we think about the process of clinical research, a system that is currently fraught with misaligned incentives, hindered by stigma, and contributing to a costly healthcare ecosystem.

Could blockchain be the answer?

Recently healthcare futurist Bertalan Meskó, MD, PhD released a list of the top 12 companies bringing blockchain to healthcare. Scanning through the list of use cases for blockchain in health, it is easy to be optimistic that a new paradigm is in reach for data in clinical research as well. Considering blockchain as part of the solution soothes that little voice in my head reminding me of all the conversations I have had with fellow patient advocates on the use of health data without consideration of the consumer - “No Mu without Me!” we rallied.

As we become more sophisticated in how we use data, we have to remember that these data points represent people. We have to allow consumers to be equal partners in solving the greatest health challenges of our time because we are at a crossroads. If we are to take hold of the incredible power of our personal data to transform our lives in ways big and small, we must be brave enough to yield our data for the greater good, and at the same time claim our right and our responsibility.

After years of sitting in conferences, where patients were not included, and listening to talks on patient centricity, this is a moment in time that many of us in the clinical research enterprise have been longing for.  Unlike big data, big ideas do not have owners, they only have stewards and we can only hope that the #My31 movement will become the guardian we have been waiting for.

Angela Radcliffe is an innovator in healthcare R&D who helps the research community problem solve and co-create solutions to express the impact of clinical trials to the general public. After losing a brother suddenly to an undiagnosed health condition, a clinical trial made a tremendous impact on Angela’s family. This experience exposed the impact that research can have, not just on our health, but every social cause we care about. Angela is committed to the pursuit of more authentic patient engagement, the promotion of health literacy for all, and normalizing clinical research a care option. Angela heads up PulsePoint’s Clinical Trial Solutions Practice based in Manhattan.

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