PHE - Resources

"Welcome to the Knight Center's new MOOC, "The Power of Digital Audio Storytelling: From podcasts to voice assistants." During this four-week course, you'll gain an understanding of why one of the oldest storytelling forms is having a renaissance thanks to technological changes. We'll explore the fundamentals of great audio storytelling, podcasting, voice assistants, how to get audio to your audiences, and more."

I've taken a course on podcasting from the knight center. It was excellent. These are 'on demand' courses. I usually enter, scan the resources and sample lectures. I'm signing up for this one because audio storytelling is becoming an important part of our mission.

"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 

Tyler Orion: Just a reminder, there are spots available for more participants in Reyna and Dani's upcoming Qi retreats - "Returning Home. The Journey of YiYuanTi." You can register for a single session, a full day or a 3-day virtual retreat. If you need a good way to shake off the stress of the past few months, this might be a great way to find some healing and joy.

Abstract: Protocol design complexity, and associated study volunteer burden, negatively impact patient recruitment and retention as well as overall research and development productivity. Complex protocols reduce the willingness of potential clinical trial participants to enroll and reduce retention rates. There have been few systematic assessments of protocol design characteristics to determine the burden placed on study volunteers, although such an assessment would offer a compelling opportunity to optimize trial designs and improve recruitment and retention performance. To be useful, an assessment would need to be patient-centric, and focused on the factors that influence participation throughout the clinical trial. Such an assessment would also need to accommodate the unique cost-value trade-off compared with current treatment patterns that each participant makes when choosing to participate and remain in a clinical trial. This article proposes a new methodology to quantify patient burden: the clinical trial patient friction coefficient (PFC). A case example is provided to illustrate the utility of the PFC. A number of applications for the PFC are envisioned: standardizing patient burden assessment to evaluate clinical trial design feasibility, shedding light on the impact of patient burden on clinical trial economics and performance, and conducting sensitivity analyses to identify factors that most reduce patient burden and improve the performance and efficiency of clinical trials. Key words

The COVID-19 pandemic makes it necessary for leading experts from across disciplines and geographies to come together to jointly address the challenges we are facing when coping with the disruptive nature of the coronavirus SARS-CoV-2 pandemic is having on our healthcare system and our society as a whole. The tasks upon us are enormous and include besides decoding the virus and scaling diagnostics, tackling COVID-19 within existing healthcare systems, building health data platforms that support COVID-19 focused health care, accommodating clinical trials in the era of COVID-19, and developing functional vaccines and therapeutics. The next PMWC 2021 on January 25-27 would be a virtual conference and will touch upon these critical developments and ongoing activities while also including the regulatory and investment sides that influence clinical advancements.

The program rule on Interoperability, Information Blocking, and ONC Health IT Certification, which implements the 21st Century Cures Act passed in 2016, requires patients be provided access to all the health information in their electronic medical records without charge by their healthcare provider beginning April 5, 2021

Scientists like their insights captured via validated instruments that organize data into quantifiable outputs that can be measured and managed. Patients want to tell stories, share anecdotes, and talk about the qualitative factors that affect their quality of life. These disparate communication preferences have made it difficult for the two groups to engage, or for scientists to translate those qualitative stories into systematic assessments that quantify the burden placed on study volunteers.

Recommended by DeAunne Denmark, MD, PhD: "Consumer genetic testing for health conditions has always been viewed with some skepticism by healthcare professionals. For many, direct-to-consumer (DTC) genetic testing was synonymous with 23andMe, whose health-related products are perceived as having little to no value for health care. But the landscape for consumer-initiated genetic health testing has changed dramatically in just the last year."

Resources from recent SNS FiReFilms Webinar "The COVID-19 pandemic is having a direct impact on the challenges ISD seeks to address. Bad actors and extremist groups are exploiting the pandemic and the anxieties emerging across the globe to further their extreme narratives and spread division and hate. We are working to understand the ways this global health crisis is being used, co-opted and manipulated for extremist ends"

"Accessibility and systemic discrimination bars many from being able to get the help they need. Mental health disparities that affect the black community include inequitable access, diagnosis, and treatment, and overall, more severe symptoms. Among adults with the same diagnosed mental health or addiction issue, 37.6% of White patients received treatment, while only 25% of African American patients did. Fighting for racial equality means fighting for equality in mental health care, and supporting black lives means supporting black mental health and recognizing racial trauma."

"Now more than ever, it's important to look boldly at the reality of race and gender bias -- and understand how the two can combine to create even more harm. Kimberlé Crenshaw uses the term "intersectionality" to describe this phenomenon; as she says, if you're standing in the path of multiple forms of exclusion, you're likely to get hit by both. In this moving talk, she calls on us to bear witness to this reality and speak up for victims of prejudice."

"The current debate over intersectionality is really three debates: one based on what academics like Crenshaw actually mean by the term, one based on how activists seeking to eliminate disparities between groups have interpreted the term, and a third on how some conservatives are responding to its use by those activists."

"In a world where you don't own or control your data, we source a copy of your medical data, structure it to make it usable and valuable, and store it in your personal record to own as your personal property."

"We are working alongside our partners to mitigate the impacts of COVID-19 through immediate relief, capacity building, and longer-term efforts to support resiliency and recovery, especially among marginalized communities most disproportionately impacted."

"Alzheimer's Advocate, Family Caregiver, and Health Policy/Delivery/Research/Technology Thought Leader"

"For the more than seven million people in California's Bay Area living through historic wildfires, it's been hard to breathe for the past month. For 29 days the region has been under a "Spare the Air" alert, which means inhaling outdoor air presents a health hazard. Air quality is even worse in Oregon and Washington, and by this morning smoke had stretched all the way to the East Coast and even to Europe. Wildfire smoke contains a variety of gases and particles from the materials that fuel the fire, including ozone, carbon monoxide, polycyclic aromatic compounds, nitrogen dioxide, and particulate matter-pollutants linked to respiratory and cardiovascular illnesses, according to a study in the Journal of the American Heart Association."

"Build a Personal Care Community Livpact helps you organize and connect family, friends, professional support, community services and helpful resources."

"About AMIA - American Medical Informatics Association ® Discovering Health Insights. Accelerating Healthcare Transformation. AMIA ® (American Medical Informatics Association ®) is a community committed to the vision of a world where informatics transforms people's care. Over the last 35 years, the use of informatics has grown exponentially to improve health and to make better healthcare decisions. Today, informatics is the key to accelerating the current goals of healthcare reform. Every day millions of people benefit from informaticians' ability to accelerate healthcare's transformation by collecting, analyzing and applying data directly to care decisions. Data produced throughout health and healthcare is the driving force of informatics and its ability to innovate critical advancements that directly benefit people. AMIA's members are critical to discovering these insights, which is why AMIA is committed to being the professional home for the informaticians of today and the driver of informatics' future."

"AMIA 2020 VIRTUAL ANNUAL SYMPOSIUM The Annual Symposium builds on more than 40 years of sharing pioneering research and insights for leveraging information to improve human health. Topics of interest span the spectrum from deciphering the underpinning phenomena of disease, to managing information and communications for improving patient care, to tracking the health of populations. The AMIA 2020 Annual Symposium showcases the latest innovations from the community of biomedical informatics researchers and practitioners. The AMIA 2020 Virtual Annual Symposium brings together informatics professionals from diverse backgrounds committed to transforming health through informatics. From the leading experts in the field, to the students eager to get started, the AMIA 2020 Virtual Annual Symposium provides an opportunity to learn and to grow professionally, to network, and to flesh out ideas with colleagues and start new collaborations."