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"our Choices and Information Sharing Smart Patients gives you important choices about controlling your personal information - whom you let see it, how much, and when. We encourage you to make these choices thoughtfully. Your choices include: Whether you want to browse the website anonymously or create an account and provide us your personal information; Whether you want to join Community Discussion relating to a particular condition; How much health or other personal information you want to share with other patients and caregivers through Community Discussion; Whether you want to participate in surveys we may offer from time to time. The nature of the survey and the form in which the results will be disclosed will be explained to you in advance; Whether you want to participate in any other opportunity we may offer to share your health information with others. For example, if we think you have written something in a Community Discussion that would be particularly helpful to others facing the same condition, we may invite you to post an excerpt from your comments on our public website. Any such opportunity would be clearly explained to you in advance, and whether you decide to share your information would be entirely up to you; Discontinuing active participation or closing your account at any time."

[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.

Recommended by Tyler: "Project Patient Voice has been initiated by the Oncology Center of Excellence to give patients and health care professionals unique information on symptomatic side effects to better inform their treatment choices," said FDA Principal Deputy Commissioner Amy Abernethy, M.D., Ph.D. "The Project Patient Voice pilot is a significant step in advancing a patient-centered approach to oncology drug development. Where patient-reported symptom information is collected rigorously, this information should be readily available to patients." "I'm sure this will be useful - and help cancer patients better evaluate treatment options, based on other patients' experience, especially around side effects. I think this is also worth curating." Thanks! Tyler

Recommended by Sharon Wampler: "COVID-19 FAQ The information provided on this site is for educational purposes only and is not intended as medical advice. The Andrew Weil Center for Integrative Medicine, is not responsible for individuals who choose to self-diagnose, self-treat, or use the information without consulting with their own health care practitioner. You should never alter your dosage of prescription medications without first consulting with your physician and you should always inform your physician about any dietary supplements you are taking."

"Thesis: "Patient Empowerment through Timely Information" On Friday, 1 October 2021, Thomas Timmers (CEO) successfully defended his doctoral PhD "Patient Empowerment through Timely Information" at Radboudumc.   He examines the impact of the provision of timely information using an app to increase patients' self-management throughout their treatment. The thesis includes a systematic review and the results of 2 large multi-center RCT's. Furthermore, a qualitative study was performed to determine what kind of timely education patients need."

Results Of the 74 studies identified, the majority were reviews of a single or a group of similar apps (n = 66, 89%), nearly half related to disease management (n = 34, 46%). A total of 80 safety concerns were identified, 67 related to the quality of information presented including incorrect or incomplete information, variation in content, and incorrect or inappropriate response to consumer needs. The remaining 13 related to app functionality including gaps in features, lack of validation for user input, delayed processing, failure to respond to health dangers, and faulty alarms. Of the 52 reports of actual or potential consequences, 5 had potential for patient harm. We also identified 66 reports about gaps in app development, including the lack of expert involvement, poor evidence base, and poor validation.

"How Will Coronavirus Patients Flow through Health Services? Many of you have called asking to be tested for Coronavirus. Given recent testing challenges, the CDC and County have provided physicians with a simple coronavirus patient testing & care health services flowchart. As you can see, if symptoms are mild, testing is not indicated at this time. It is my hope that we will soon be able to test everyone! The 211 number mentioned below is a San Diego County information line that helps people efficiently access appropriate services, and provides vital data and trend information. The website for 211 is https://211sandiego.org/"

"Prospective consent and governance principles for participant-led research Nine themes emerged from discussions and interviews relating to informed consent in and governance of PLR. As this PLR was driven by people with different backgrounds asking personal questions, we found that ethical reflection needed to be ongoing and tailored to the individual. For this reason, prospective governance principles were drafted rather than codified rules. Many of the themes were expressed over the course of our PLR as an ongoing informed consent. The process, fostered via frequent communication, helped to reinforce trust among participants and organisers.43 44 Transparency: All relevant information about the project should be actively shared among participants and participant-organisers, including the source of research funding, equipment selection, data management protocols, risks and benefits and conflicts of interest. Access to Expertise: Participant-led research (PLR) requires access to experts (eg, in experimental design, data analysis, research ethics) so that participants can rigorously carry out single-subject experiments.45 Data Access & Control: The participant has the right and ability to manage their own data, and has the final say in what they collect about themselves. Right to Withdraw: Participants have a right to reduce or withdraw their participation at any time. Relevance: PLR addresses questions of relevance to the participants. Beneficence: The participant actively reflects on the balance of benefits and risks of participation and freely choose whether to participate. Responsibility: PLR requires that the participant actively consider the potential benefits and harms of the project to both themselves and others. The responsibility to stay informed is an ongoing process, not a one-time decision. Flexibility: Ethical reflection in PLR should be tailored to individual needs and to the specific context, rather than be handled with 'one size fits all�

The UnDx Consortium The UnDx Consortium™ is an initiative of precision medicine technology companies and scientists to explore how a multidisciplinary approach to precision medicine can provide information and answers for patients with undiagnosed diseases. is an initiative of precision medicine technology companies and scientists to explore how a multidisciplinary approach to precision medicine can provide information and answers for patients with undiagnosed diseases.

"Empowering patients to have greater agency in, and control over health decisions. A patient's health literacy is their ability to read, understand and use health care information to make informed decisions and modify behaviours that affect their personal healthcare needs. Promoting health literacy among patients creates a more collaborative care environment, one that empowers patients to have greater agency in, and control over, their own care decisions. CCMI's Health Literacy programs introduce participants to concepts that support and emphasize the importance of being able to support patients and communicate clearly so that patients and family members can truly participate in care. Participants will gain an understating of Health Literacy concepts and learn practical skills for engaging with patients to ensure clear and effective communication."

"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."

Tyler's close friend Romina works for this organization. "San Diego Health Connect is the health information utility that unifies the San Diego healthcare ecosystem. We securely connect providers, patients, private health information exchanges (HIEs) and others to improve the quality and cost of care in our community. As a non-profit organization, we exist to serve every member of the community-and to make San Diego an even better place to live."

"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."

Abstract As biometric technology relies on bodily, physical information, it is among the more intrusive technologies in the contemporary consumer market. Consumer products containing biometric technology are becoming more popular and normalized, yet little is known about public perceptions concerning its privacy implications, especially from the perspective of human agency. This study examines how people perceive biometric technologies in different societal contexts and via different agents in control. Our study revealed that, in large part, people's perceptions of biometric technology are context-dependent, based on who retrieves and who benefits from the information and the situation where the data are collected. Participants were much more comfortable with more intrusive biometric technology in airport security than in a grocery store, and if it was employed to improve their health. We conclude by considering the implications of the survey for new threats to personal privacy that arise out of emerging technologies. Keywords biometric, facial recognition, DNA identification, digital privacy, digital data sharing, emerging technology, surveillance technology, contextual integrity, situational privacy

"Understanding how life uses time to improve health, education, and the world. Life on Earth is the living embodiment of information's value. Now that individuals generate data across time with digital trails and wearable sensors, we can begin to see how humans evolved to use time to orchestrate their bodies. Modern life often conflicts with natural time by imposing social demands that go against the rhythms of our bodies. The more we learn about time in our lives (and the lives of all organisms), the more informed can be our personal and societal choices about how we use time in this modern context for which we are not so well adapted. Ongoing projects are listed below, but are not exhaustive. While they may seem disparate, they are united in generating examples of the opportunities that incorporating biological time seems to offer across fields and across populations. I encourage any and all to reach out if they are interested in biological time and/or how data can influence your life. Student projects are welcome, as are academic and private collaborations with a goal of sharing information."

"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."

"Participant-Led Research Information Questionnaire"

"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."

"I want it like I never dealt with 23andMe, which, as it turns out, is pretty much impossible - at least for the next decade."

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.