# Curing Ourselves With Our Own Data By [Hacking Incentives](https://paragraph.com/@hacking-incentives) · 2022-03-04 --- **Medical research has made tremendous strides in understanding the causes of cancer and mitigating its devastating effects. This research dates back to 1775, when it was first understood that exposure to chimney soot is a risk factor. Over the past 250 years, we have (i) developed living models of cancer in the lab, (ii) found drugs that kill cancer cells efficiently in a dish, and (iii) even cured mice of this deadly disease. However, if these treatments even make it to a clinical trial, they usually fail to achieve better outcomes** than the unsatisfactory standard to which they are compared. So even as significant advances accumulate in the lab, they fall short in the clinic, and we seldom learn why. > **“…even as significant advances accumulate in the lab, they fall short in the clinic, and we seldom learn why.”** Sharing data can quicken the pace of scientific discovery by focusing attention on promising signals generated by researchers with shared goals. In cancer research, there’s little debate about sides; **we all want to eradicate this disease by preventing it from occurring and getting rid of it once it does.** Greater availability of patient data from trials means that (i) researchers can check one another’s work and correct inaccuracies in reporting of medical trial results, (ii) researchers can test hypotheses using larger datasets, which allows them to make more reliable conclusions, and (iii) signals from small subsets of patients in trials can be expanded upon and followed up. These are the central tenets of personalized medicine to which we all aspire. **However, sharing patient data is not so simple**. What a treatment does to a patient is hard to report without describing who that patient is. For example, sharing information about cancer mutations might reveal other risks in that patient’s DNA or that of his offspring. In other words, patients’ privacy is at stake. Traditional methods of de-identifying patient data are helpful but not airtight — data can be mishandled or worse, re-identified by malicious actors. In fact, HIPAA (the Health Insurance Portability and Accountability Act of 1996) provides clear barriers to sharing patient data in the United-States. Moreover, patients’ concern for privacy is asymmetric. As the recent data breach involving [Cambridge Analytica and Facebook](https://www.wired.com/story/wired-facebook-cambridge-analytica-coverage/) demonstrate, it takes only one breach to nullify many episodes of successful preservation of privacy and destroy trust. \*\*We think getting valuable patient data for cancer research while maintaining data privacy has a simple solution: just ask the patients to share. \*\*Seem too simple to work? A recent [study](https://www.nejm.org/doi/full/10.1056/NEJMsa1713258) of patient attitudes about data sharing revealed that 93% of patients were fully willing to allow their data to be shared with scientists. Only 8% of them believed that the potential negative consequences of data sharing outweighed the positive ones. This study included hundreds of patients from diverse backgrounds. At first glance, these results seem odd. Why would patients be willing to take the chance that their identity would be inadvertently or maliciously linked to their medical records? This is especially perplexing considering the relatively slow pace of scientific research. **Patients who share their data today are unlikely to personally benefit from scientific discovery in their lifetimes**, especially those with metastatic cancer whose lifespans are realistically anticipated to be weeks to months. We believe the answer lies in the [human drive to leave a positive legacy](https://pdfs.semanticscholar.org/2858/669321dadcb16fff03b01701894a1adb55a2.pdf) in the world. [Research finds](http://connection.ebscohost.com/c/articles/44882929/hot-cool-death-awareness-work-mortality-cues-aging-self-protective-prosocial-motivations) that legacy motivation is especially strong among people who are near the end of their lives and who wish to live on through their positive impact on others. [This is the case, for example, with kidney donors.](https://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html) It is heart-breaking to consider the situation of terminal cancer patients who must face the inevitability of their prognosis. Seeking to provide a meaningful contribution to the world is a noble way of dealing with these difficult circumstances, and people naturally view consenting to contribute their data to medical research as a way to help others in the same situation. > “Grave men, near death, who see with blinding sight. Blind eyes could blaze like meteors and be gay. Rage, rage against the dying of the light.” — Dylan Thomas Thoughtful incentive programs can improve the infrastructure for patient data sharing. The legacy incentives that motivate patients to share their data can be enhanced by creating tokens that can be transferred to future generations along with patient data. These tokens could have some future value in the form of rewards from philanthropic foundations or tax implications for the family of the token’s namesake. They could contain photos, essays, unfinished works, or will instructions for future generations. Different pieces of this information can be made accessible to different people through different levels of encryption. Parents could incorporate as much of themselves as possible into the token before gifting it to their children. It could even be turned into a gift to a stranger who benefitted from the cancer research made possible by your data. **The upshot is that these tokens can serve as an important psychological source of meaning**. Knowing that a future patient who would benefit from the scientific discoveries made possible by one’s data would also receive a token that symbolizes one’s contribution can be a tremendous comfort to a current cancer patient. The additional comfort of knowing that the blockchain will be an immutable record that could realistically outlive any central actor is naturally attractive for legacy purposes. More generally, networks that connect current and future generations and motivate them to “pay it forward” can make the current generation’s goal of leaving a positive legacy more likely to happen. There is also a cross-sectional community aspect as well, where a group of patients may provide support and motivation for each other to contribute by sharing their own stories and motivations. Giving an outlet to patients’ legacy motivation can also sidestep privacy concerns expressed in HIPAA. While a doctor, nurse, or well-wishing pharmaceutical company or medical center is legally liable for leaking data, an educated and technically empowered patient can share her data with the world without repercussions. The law today is clear: patients own their medical data and may do with it what they wish. Speaking more practically, however, most patients are simply not in a position to exercise complete control and distribution over their data. This is due to a number of factors, like monetization by providers, the misunderstanding of data rights, and technical hurdles associated with transferring large imaging and genomic datatypes common in modern cancer care. By addressing patients’ legacy motivation and desire to do good in the world, we can give control of medical data back to the people who rightfully own it — patients themselves. --- *Originally published on [Hacking Incentives](https://paragraph.com/@hacking-incentives/curing-ourselves-with-our-own-data)*