PHE - Resources

"Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients. Topics on the show include the emergence of personalized medicine and breakthroughs in genomics advances for aging in place using big data from wearables and sensors transparency in the medical marketplace challenges for connected health entrepreneurs The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors."

"NAD+ is essential to the creation of energy in the body and the regulation of pivotal cellular processes. Here's why it's so important, how it was discovered, and how you can get more of it."

Camille Nebeker* 11/13

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

"The unhealthy effects of the good life"

"To deal with chronic pain, Pamela Bobb's morning routine now includes stretching and meditation at home in Fairfield Glade, Tenn. Bobb says this mind-body awareness intervention has greatly reduced the amount of painkiller she needs. Jessica Tezak for NPR" ~ 6 minute listen

Root cause tracker for health

President and Chief Executive Officer sterry (AT) geneticalliance (DOT) org Biographical Sketch Sharon F. Terry is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for ordinary people to take charge of their health and to further biomedical research.

"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."

THE QUANTIFIED SELF is about making personally relevant discoveries using our own self-collected data. We call this practice everyday science, a name that emphasizes its nonprofessional character. Lately we've begun organizing small group projects that show how collaboration can make individual projects easier. Sometimes, joining forces with others who share our question can make it possible to create both personal and generalizable health knowledge. Following the scholar Effy Vayena, we use the term "participant-led research" (PLR) to describe this approach.

""The best technology conference in the world." - The Economist REGISTER NOWThe 18th annual Future in Review Conference Oct. 6-9, 2020 - The Lodge at Torrey Pines, La Jolla, CA  A Strategic News Service Presentation"

"Want to see your sleep data at the Helsinki Design Museum? ŌURA is proud to be participating in "Enter and Encounter", a joint exhibition by Helsinki Design Museum and the Finnish Association of Designers Ornamo. This unique exhibition celebrates contemporary Finnish design and Finland's centenary anniversary. As part of the exhibition, we are happy to invite 100 active ŌURA users to share their sleep data and participate in the media installation "How did you sleep last night?"."

"Nature Medicine and Nature Metabolism present a Focus on the global burden of cardiometabolic diseases. The articles span topics from the basic mechanisms regulating metabolic and cardiovascular functions to clinical practice and the societal impact of these diseases globally."

"A rapidly entering health care and serving major roles, from automating drudgery and routine tasks in medical practice to managing patients and medical resources. As developers create AI systems to take on these tasks, several risks and challenges emerge, including the risk of injuries to patients from AI system errors, the risk to patient privacy of data acquisition and AI inference, and more. Potential solutions are complex but involve investment in infrastructure for high-quality, representative data; collaborative oversight by both the Food and Drug Administration and other health-care actors; and changes to medical education that will prepare providers for shifting roles in an evolving system."

"Researchers are making a counter-intuitive claim: reality itself may be subjective, thanks to quantum weirdness on a microscopic scale."

"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."

"Creating Partnerships, Motivating Individuals, Facilitating Change The Centre for Collaboration, Motivation and Innovation (CCMI) helps individuals and organizations create partnerships that improve health and well-being. We do this by working collaboratively to inspire new ways of thinking about helping relationships, teach practical skills that foster partnerships, and implement strategies for system-wide change."

"Poonacha Machaiah is a global leader among a new breed of social entrepreneurs who is applying his corporate expertise from 25 years as a business leader in Fortune 100 companies as well as his background in advanced technological strategies to tackling social and environmental problems. Machaiah has collaborated extensively with Deepak Chopra, M.D., world-renowned mind-body medicine pioneer and New York Times best-selling author, in their shared mission of "personal transformation and societal wellbeing." Together they have designed and overseen the launch of wellbeing programs in corporations and communities around the world."

"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�

"While citizen science is gaining attention of late, for those of us involved in community-based public health research, community/citizen involvement in research has steadily increased over the past 50 years. Community Health Workers (CHWs), also known as Promotores de Salud in the Latino community, are critical to reaching underserved populations, where health disparities are more prevalent. CHWs/Promotores provide health education and services and may also assist with the development and implementation of community- and clinic-based research studies. Recognizing that CHWs typically have no formal academic training in research design or methods, and considering that rigor in research is critical to obtaining meaningful results, we designed instruction to fill this gap. We call this educational initiative "Building Research Integrity and Capacity" or BRIC. The BRIC training consists of eight modules that can be administered as a self-paced training or incorporated into in-person, professional development geared to a specific health intervention study. While we initially designed this culturally-grounded, applied ethics training for Latino/Hispanic community research facilitators, BRIC training modules have been adapted for and tested with non-Latino novice research facilitators. This paper describes the BRIC core content and instructional design process."