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"This pandemic has been studied more intensely in a shorter amount of time than any other human event. Our globalized world has rapidly generated and shared a vast amount of information about it. It is inevitable that there will be bad as well as good data in that mix. These massive, decentralized, and crowd-sourced data can reliably be converted to life-saving knowledge if tempered by expertise, transparency, rigor, and collaboration. When making your own decisions, read closely, trust carefully, and when in doubt, look to the experts."

Recommended by Tyler Orion - "For data from wearable technology to apps to text messaging, ownership is determined by the terms and conditions you agree to. The Apple Watch and Google Fitbit, for example, are both designed to give you access to key indicators of your health but their terms and conditions don't give you ownership of your data - and users don't know how their data are being used. This landscape is further complicated by the status of data under property law, which isn't viewed as wholly "ownable." And since current laws don't view people as the owners of their personal data, health care and service providers treat data as under their ownership. And those data are lucrative."

"With approximately 133M Americans (more than 40% of the US population) suffering from one or more chronic diseases, the healthcare community is looking for more effective and efficient ways to manage chronic diseases. Part of that pursuit is in finding sustainable ways to help patients better understand their conditions and manage their health by empowering patients, connecting them to information, care, and therapies in ways they want. Join fellow innovators to work on a challenging, multi-faceted, meaningful opportunity to advance clinical care, quality of life, and outcomes for nearly half the US. How can we improve patient literacy and clinical understanding? How do we help patients feel more in-control of their medical care? What can be done to help patients understand when and where they should seek care? These are just some of the pain points begging for thoughtful, tech-enabled solutions."

"Current research and privacy regulations, which were designed for clinical research and for small-data studies of the past, cannot support creation of the vast data resources that 21st-century science needs. These regulations enshrine data-holders (hospitals, insurers, and other entities that store people's data) as the prime movers in assembling large-scale data resources for scientific use and rely on mechanisms - such as de-identification of data and waivers of individual consent - that are unworkable going forward. They shower individuals with unwanted, paternalistic protections - such as barriers to access to their own research results - while denying them a voice in what will be done with their data."

"What happens when people turn their everyday experience into data: an introduction to the essential ideas and key challenges of self-tracking. People keep track. In the eighteenth century, Benjamin Franklin kept charts of time spent and virtues lived up to. Today, people use technology to self-track: hours slept, steps taken, calories consumed, medications administered. Ninety million wearable sensors were shipped in 2014 to help us gather data about our lives. This book examines how people record, analyze, and reflect on this data, looking at the tools they use and the communities they become part of. Gina Neff and Dawn Nafus describe what happens when people turn their everyday experience-in particular, health and wellness-related experience-into data, and offer an introduction to the essential ideas and key challenges of using these technologies. They consider self-tracking as a social and cultural phenomenon, describing not only the use of data as a kind of mirror of the self but also how this enables people to connect to, and learn from, others. Neff and Nafus consider what's at stake: who wants our data and why; the practices of serious self-tracking enthusiasts; the design of commercial self-tracking technology; and how self-tracking can fill gaps in the healthcare system. Today, no one can lead an entirely untracked life. Neff and Nafus show us how to use data in a way that empowers and educates."

"Abstract Elevated core temperature constitutes an important biomarker for COVID-19 infection; however, no standards currently exist to monitor fever using wearable peripheral temperature sensors. Evidence that sensors could be used to develop fever monitoring capabilities would enable large-scale health-monitoring research and provide high-temporal resolution data on fever responses across heterogeneous populations. We launched the TemPredict study in March of 2020 to capture continuous physiological data, including peripheral temperature, from a commercially available wearable device during the novel coronavirus pandemic. We coupled these data with symptom reports and COVID-19 diagnosis data. Here we report findings from the first 50 subjects who reported COVID-19 infections. These cases provide the first evidence that illness-associated elevations in peripheral temperature are observable using wearable devices and correlate with self-reported fever. Our analyses support the hypothesis that wearable sensors can detect illnesses in the absence of symptom recognition. Finally, these data support the hypothesis that prediction of illness onset is possible using continuously generated physiological data collected by wearable sensors. Our findings should encourage further research into the role of wearable sensors in public health efforts aimed at illness detection, and underscore the importance of integrating temperature sensors into commercially available wearables."

Recommended by Tyler Orion- "As the future of our healthcare system moves towards electronic healthcare records, we need patient data ownership rights to protect patient care. 4 Principles 1. Patients co-own or fully own every health data point about themselves. 2. Health data generated about the patient by a provider is co-owned by both parties. 3. Health data generated by the patient is fully owned by the patient with a right to possess, share, sell, or destroy. 4. All uses of a patients' health data shall be consented in advance by the patient, other than uses required by law."

"Life science companies seeking further advances toward a truly patient-centric future should consider working with an external partner that has extensive experience and a reliable, transparent and proven information portfolio. Leveraging core data linked and integrated with data generated by patients, and providing access to novel, on-demand data sources through a network of curated data partners provides enriched data that goes beyond the patient experience with a particular brand. By understanding the full details of the patient journey, optimal engagement of patients and HCPs can be enabled, thereby delivering the right treatment to the right patient, supporting adoption and adherence and achieving the ultimate goal of patient-centricity."

"There is great interest in and excitement about the concept of personalized or precision medicine and, in particular, advancing this vision via various 'big data' efforts. While these methods are necessary, they are insufficient to achieve the full personalized medicine promise. A rigorous, complementary 'small data' paradigm that can function both autonomously from and in collaboration with big data is also needed. By 'small data' we build on Estrin's formulation and refer to the rigorous use of data by and for a specific N-of-1 unit (i.e., a single person, clinic, hospital, healthcare system, community, city, etc.) to facilitate improved individual-level description, prediction and, ultimately, control for that specific unit."

Dr. Michael Kurisu D.O. "My take is this article is written by a very credible source. John P.A. Ioannidis is from Stanford and great resource. Makes argument that we are basing a LOT of our decisions on faulty or NO data ! Its fascinating to me that there has been less than 10,000 deaths globally and we have had SO MUCH DISRUPTION in the economy. I definitely feel we should be tracking the amount of deaths that are going to occur from people that will be pushed into poverty as well as the number of people being denied access to medical care right now. Yes… with COVID19, it CAN get much worse…. But maybe not… we don't know yet. This article actually increased my morale and put me on track to help GET MORE DATA. Then we can make informed decisions. And then TRACK ALL THE DATA moving forward.

DeAunne Denmark, MD, PhD, "Excellent piece spelling out the pervasive and critical issues due to abysmal lack/tardiness in US testing, especially of large populations where initial outbreaks occurred, for those both visibly sick and not. And most importantly, healthcare workers. We cannot even begin to estimate CFR, much less develop reliable projection models, without valid data on everybody who is carrying. "The most valuable piece of information for answering those questions would be to know the current prevalence of the infection in a random sample of a population and to repeat this exercise at regular time intervals to estimate the incidence of new infections."

"Cahana broke down the possibilities presented by distributed ledger technology. "Blockchain offers an operational environment that allows us to analyze data at its source. We don't need to create these huge data banks that can be hacked and manipulated. We don't need to bring the data to the algorithm, the algorithm can go to the data. It is called federated learning which is like machine learning together with privacy-preserving technologies," said Cahana. "The idea of introducing a whole token economy into healthcare is to transform people from health service consumers to health and wealth producers. As opposed to artificial intelligence (AI), machine learning, genomics, telemedicine, and all these things that are innovative and are general-purpose technologies that make things faster, better and cheaper, blockchain really is disruptive in the business model. It really transforms digital healthcare from patient-centric to patient-driven. People can drive their own health similar to how they invest in their wealth.""

"Abstract Traditional screening for COVID-19 typically includes survey questions about symptoms and travel history, as well as temperature measurements. Here, we explore whether personal sensor data collected over time may help identify subtle changes indicating an infection, such as in patients with COVID-19. We have developed a smartphone app that collects smartwatch and activity tracker data, as well as self-reported symptoms and diagnostic testing results, from individuals in the United States, and have assessed whether symptom and sensor data can differentiate COVID-19 positive versus negative cases in symptomatic individuals. We enrolled 30,529 participants between 25 March and 7 June 2020, of whom 3,811 reported symptoms. Of these symptomatic individuals, 54 reported testing positive and 279 negative for COVID-19. We found that a combination of symptom and sensor data resulted in an area under the curve (AUC) of 0.80 (interquartile range (IQR): 0.73-0.86) for discriminating between symptomatic individuals who were positive or negative for COVID-19, a performance that is significantly better (P 

RARE‐X is committed to transforming rare disease by ensuring that patient communities, clinicians, researchers, and drug developers have access to the right data at the right time. At the heart of RARE‐X's approach is a belief that patients should own their data. In July 2021, RARE‐X launched itsfirst set of rare disease pilot programs on its data collection platform supported by data governance and consent that will ensure participants who spend the time to enter their data are able to share it with those stakeholders they choose.

"We hear a lot about how big data, smart devices, and all the '-omics' (for example, genomics, proteomics, metabolomics, and so forth) are going to transform medicine-and they will. But there is another force that is going to change the way we think about and practice health, and that is our small data-small data derived from our individual digital traces."

Rosling and Gapminder creating stunning dynamic data visualizations of WHO (World Heath Organization) statistics. They are dedicated to proving with data the FACTS about our world. This is a way to a global view point that will help us all see that life on our planet is far better than it has ever been. Ready to use data to challenge your assumptions and shed your misconceptions? Dive in!

Recommended by DeAunne Denmark, MD. Phd.

"LearnSphere integrates existing and new educational data and analysis repositories to offer the world's largest learning analytics infrastructure with methods, linked data, and portal access to relevant resources." Stanford is working with the Tigris online workflow authoring tool. Need to explore this tool. No UCSD links?

"Every patient has a story Medicine used to be a one-size fits all model. Disease X meant treatment Y. Doctors made decisions and patients listened.  Clinical trials were our only data source. But those days are over. Medicine has gotten personal.   Today, we know  that every patient has a unique medical story. The best care requires knowing those stories and the next generation of medical discovery requires compiling those stories into structured data sets.   That's why PicnicHealth works directly with patients to gather and manage complete, up-to-date medical records. That's also why with our PicnicAI platform, we go beyond serving patients directly, and partner with the most innovative Life Sciences companies to sponsor PicnicHealth accounts for groups of research volunteers. Only by putting patients in control of their own data will we move beyond fragmented, unstructured medical records for both individual patient benefit today and for the opportunity to meaningfully contribute to tomorrow's medicine."