PHE - Resources

"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."

"The internet giants depend on our data. A new relationship between us and them could deliver real value to society."

"New York-based writer Porochista Khakpour has spent 12 years seeking answers to a variety of strange physical symptoms that have baffled doctors, from convulsions and tremors that feel like a panic attack, to debilitating fatigue. She's sought midnight answers for strange fevers and painful gastritis, spent hundreds of sleepless nights fighting with drug-resistant insomnia, experienced rapid weight loss or gains of up to 40 pounds without any changes in diet, and most frightening to her, difficulty swallowing."

We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients - annually reaching over 3.5 million unique visitors on our website. LymeDisease.org is grounded in the principles of patient empowerment, participation, and self-determination. We fight to make the patient voice stronger to support science-based advocacy bring about legislative change, and create a future where Lyme patients can receive the treatments they need to get well. LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.

"By Capucine Ortoli and originally published at theteamakers.org. Having spent the last one and a half years contributing to the development of teal, trust-based, empowering organisations & teams adoption in a relatively large company, I feel I am getting stuck in an "in-between" world of transitioning.  I wonder if this is only about me being a rebel to any KPI, to any control, me being so dogmatic & idealistic that I cannot be the bridge that "people" expect me to be …between the so-called 'old ways' and 'new ways' of doing, thinking and being in corporate companies."

"By Chris Cowan and originally published in medium  Holacracy Facilitator's Guide This post is oriented a bit towards facilitators, but it should be helpful for anyone who wants to understand objections a little better."

""Excitement for precision medicine must be matched with clear-eyed examinations of the possibility for this emerging field to exacerbate existing risks…or create new points of vulnerability.""

About LIGHT After eight years of research and development, UC San Diego will debut a novel program this September, called LIGHT (Light Induced Guided Healing Therapy) through its Centers for Integrative Health. Developed by Paula Marie Jackson and Tom Thudiyanplackal, LIGHT is an evidence-based protocol that empowers the individual with a self-care approach to enhancing self-efficacy, which is an individual's belief in his or her innate ability to achieve goals. This protocol has been shown to improve mood, decrease fatigue, and positively affect quality of life.

App Directory Browse Manage Build Precision Healthcare Ecosystem Your settings have been saved. Browse Apps Google Drive Edit configuration Google Drive Added by Dennis OConnor on August 31st, 2018 * Google Drive lets you store files securely online, access them from anywhere, and collaborate with others. Add the Google Drive app to create Google Docs, import any type of file from Google Drive, and get notifications on new comments, files, and access requests - all without leaving your conversations in Slack. Authentication The Google Drive integration is built in for your workspace, but it must be configured for each individual member who wants to import Google Drive files. Authenticated as: askus@precisionhealthcareecosystem.org Usage Guide Use Google Drive within Slack to: Share and manage access to your files - either to view, edit, or leave comments - from within Slack. Get updates in Slack on changes in Drive, like comments, access requests, and new files shared with you. Reply directly to comments from within Slack and have them posted to the file. Continue the conversation with any additional comments in Google Drive going straight into that Slack thread. Find your files quickly, even if you don't remember their name, by searching directly in Slack. Slack automatically indexes the contents of any Google Drive file you share so you can find when you need it. Create new Google Docs, Slides, and Sheets directly from Slack by clicking the "+" button to the left of the Slack message box. Import an existing file from Google Drive directly from Slack by clicking the "+" button or pasting a link. You'll see a preview of the file in Slack. Customize Name Choose the name that this integration will post as. Using Slack Product Enterprise Pricing Support Slack Guides App Directory API Slack Jobs Customers Developers Events Blog Podcast Slack Sh

[Google Drive] [Precision Healthcare Ecosystem] On Precision Healthcare Ecosystem, Google Drive would like to: Confirm your identity on Precision Healthcare Ecosystem Access information about your public channels Google Drive will be able to access basic information about your public channels (including names, topics, purposes, creation date, and latest message). Access information about your workspace Google Drive will be able to access information about Precision Healthcare Ecosystem, including name, email domain, and icon. View email addresses of people on your workspace Google Drive will be able to view the email addresses of your Slack workspace's members. Send messages as Google Drive Google Drive will be able to send messages to Precision Healthcare Ecosystem. View some URLs in messages Google Drive will be able to view docs.google.com and drive.google.com URLs to provide previews and other functionality. Add a bot user with the username @googledrive Google Drive will be able to install a bot user that appears in and has access to your workspace's directory. It can also post messages and view activity on messages in any channel it is invited to. Access your workspace's files, comments, and associated information Google Drive will be able to access content of files created inside of or uploaded to Slack (including information such as who uploaded the files, when they were uploaded, associated comments, and sharing history). Access your workspace's profile information Google Drive will be able to access profile information for all users on Precision Healthcare Ecosystem, including names and contact information.

The Slack for Education program offers an 85% discount on one of our paid plans. After we've applied the discount, the annual cost per member will be as follows: Standard plan - $12 per member, per year Plus plan - $22.50 per member, per year

We welcome applications from organizations that hold a valid charitable status with either the IRS (in the United States), a local tax service/charity commission, or a local TechSoup Global partner. Also, your organization must not be any of following: A legislative or political activity organization A church, association of churches, or other religious organization A school, college, or a related organization* A government office An organization that attempts to influence public opinion A hospital, organization involved with health insurance or group health plans, or a related organization A private grant-making, independent, or operating foundation

"Tom Andriola joined the University as its Vice President and System Chief Information Officer (CIO) in 2013. He provides leadership across the University working closely with campus and healthcare leaders to explore opportunities for technology and innovation to enhance the UC missions of teaching, research, patient care and public service."

"The Leichtag Foundation honors the legacy of Lee and Toni Leichtag through igniting and inspiring vibrant Jewish life, advancing self-sufficiency and stimulating social entrepreneurship in coastal North San Diego County and Jerusalem. Since its inception in 1991, the Leichtag Foundation has granted over $119 million to 391 different organizations. Of this amount, over $104 million has been granted since becoming independent in late 2007. About 23% has stayed in Encinitas. [Updated August 2017]"

""Systems biology and medicine - not only in the lab but in the everyday lives of people - challenges the imagination and will transform the 21st Century.""

"Leroy Hood, MD, PhD SVP and Chief Science Officer, Providence St. Joseph Health; Chief Strategy Officer, Co-founder and Professor, ISB"