PHE - Resources

Recommended by Oz Gontang: Interesting take on news sources, fact vs opinion, and bias.

Recommended by Tyler Orion: Understanding the Rare Disease Ecosystem "Rare diseases (RDs) are different from more common ones, often presenting special challenges for patients, physicians, caregivers, payers, and pharma companies. Those differences and challenges are mostly a consequence of rarity (of patients, experts, data, resources, etc.) and the typically high disease burden. "

DeAunne Denmark MD, PhD; Very interesting developments. Really hope this will start pointing toward more effective, targeted treatments. "Evidence is growing that self-attacking 'autoantibodies' could be the key to understanding some of the worst cases of SARS-CoV-2 infection."

Interesting email thread, initiated by Mike, with additional resources suggested by DeAunne

Everyone ages at different rates. Our "true age" (also called "biological age") depends on how much inflammation we encounter in our lifestyle and environment, combining with our genetics. True age represents our capacity for resilience, in tolerating and recovering from these life stresses. By increasing this resilience, we could even get younger in true age! It requires frequent tracking of biomarkers like heart rate variability (HRV).

"The national map below displays those locations that have received shipments of monoclonal antibody therapeutics under the U.S. Food and Drug Administration Emergency Use Authorization (EUA) authority, within the past several weeks. "

Recommended by: DeAunne Denmark, MD, PhD "It's important for the public to be aware of what's available to them in the world of genomics and precision medicine. Various resources are available that provide general and disease-specific information about genomics and precision medicine. A list of some resources available to the public is provided below, but additional resources are likely available through your health provider or other groups such as the US National Institutes of Health."

The resource index in this article is incredible.

DeAunne Denmark, MD, PhD: This is a good summary of current state re: clinical application of digital health technologies w/ one of the top academics in precision med - Geoff Ginsburg at Duke Ctr for Applied Genomics & PM. "Interview with Geoffrey S. Ginsburg, MD, PhD, author of Digital Health-The Need to Assess Benefits, Risks, and Value"

"Although each effort is being conducted separately, all of the studies center around a common principle that by establishing a baseline set of biometrics for every study participant - including temperature, heart rate, and activity and sleep levels - researchers can detect deviations that are suggestive of illness." "Forget precision medicine. This is precision health," said Michael Snyder, Stanford University School of Medicine genetics department chair and director of genomics and personalized medicine.

"How to negotiate the nation's top hospitals for cancer" It's National Cancer Awareness Month, and NBC senior national correspondent Kate Snow joins TODAY with a look at the world-class cancer care that's available if you just know who and how to ask. A cancer survivor describes how she chose her care. Among the recommendations for people with a cancer diagnosis: Work with a medical advocate, and don't delay.

Suggested by Gina Soloperta Abstract Background: Due to striking disparities in the implementation of healthcare innovations, it is imperative that researchers and practitioners can meaningfully use implementation determinant frameworks to understand why disparities exist in access, receipt, use, quality, or outcomes of healthcare. Our prior work documented and piloted the first published adaptation of an existing implementation determinant framework with health equity domains to create the Health Equity Implementation Framework. We recommended integrating these three health equity domains to existing implementation determinant frameworks: (1) culturally relevant factors of recipients, (2) clinical encounter or patient-provider interaction, and (3) societal context (including but not limited to social determinants of health). This framework was developed for healthcare and clinical practice settings. Some implementation teams have begun using the Health Equity Implementation Framework in their evaluations and asked for more guidance. Methods: We completed a consensus process with our authorship team to clarify steps to incorporate a health equity lens into an implementation determinant framework. Results: We describe steps to integrate health equity domains into implementation determinant frameworks for implementation research and practice. For each step, we compiled examples or practical tools to assist implementation researchers and practitioners in applying those steps. For each domain, we compiled definitions with supporting literature, showcased an illustrative example, and suggested sample quantitative and qualitative measures. Conclusion: Incorporating health equity domains within implementation determinant frameworks may optimize the scientific yield and equity of implementation efforts by assessing and ideally addressing implementation and equity barriers simultaneously. These practical guidance and tools provided can assist implementation rese

Recommended by Gina Soloperto: "Applying lessons from behavioral economics, health systems are using "nudges" to influence the choices clinicians make."

"The use of telehealth services has expanded dramatically since the onset of COVID-19, driven by necessity and enabled by emergency changes to the policy landscape. To assess the implications of this broad expansion, the Milken Institute Center for the Future of Aging, Center for Public Health, and FasterCures analyzed recent policy updates and trends related to telehealth and put forward a series of actionable recommendations. This brief discusses recent legislative and regulatory changes and identifies opportunities to scale access to services, foster health equity, and support innovation in the months and years ahead."

"People Science is a tech-led platform that will connect health minded people, research scientists, and healthcare providers in an effort to unlock the potential of alternative medicines. Too little is known about alternative medicines like medical cannabis, prebiotics and probiotics, nutritional supplements, psychedelics, and other plant-based medicines. That's about to change. Our goal is to help people understand which alternative medicines can best help them on their path to wellness. Doctors will learn more too. By connecting health minded people with doctors and research scientists on our cutting edge platform, C.H.L.O.E., we will advance our collective knowledge of alternative medicines. This will also assist manufacturers to develop better products backed by rigorous scientific testing and research."

DeAunne Denmark, MD. Phd "This is a good recent webinar with some details about how their platform works on both patient and enterprise sides, and frames why "context" is so important, and how it can be analyzed as a part of imperfect, complex real-world datasets. Drives home that the types of analytics needed for this are actually not new - used extensively already on consumers for marketing, sales, etc. and have been for awhile. Also good segment about patient consent and data rights - values, integrity, respect."

ERIC J. DAZA Digital WISDOM: Esametry An n-of-1, single-case, or single-subject study is an idiographic, within-individual study of one person's recurrent characteristics and patterns under various exposure or treatment conditions. These exposure periods make up repeating intervals that can be accurately described as a set of partitioned time series of variables (e.g., outcomes and predictors). The core idea is that there are stable periodic or cyclic patterns that are predictable.

"I strive to advance the science of individual well-being by bridging and communicating statistical concepts with precision and empathy. I'm a data science statistician with 18+ years of experience. I build study design and analysis methods for individual-focused digital health using an n-of-1 / single-case causal inference framework."

Discovered by Dr. Kurisu, "Great marketing and such. The model seems very similar to Luna but leaning heavily on wearable and lifestyle devices etc…" "Evidation's mission is to empower everyone to participate in better health outcomes. Evidation measures health in everyday life and enables anyone to participate in ground-breaking research and health programs. Built upon a foundation of user privacy and control over permissioned health data, Evidation's Achievement platform is trusted by millions of individuals-generating data with unprecedented speed, scale, and rigor. We partner with leading life sciences and healthcare companies to understand health and disease outside the clinic walls."