Group items tagged

"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."

"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."

Discovered by Tyler Orion: "EDNA is the first Genetic Sequencing Service Provider to go far beyond hereditary or ancestral related reporting. EDNA allows individuals from anywhere in the world to own their personal encrypted whole genome sequence, and sell and/or donate their personal genome to accredited medical research teams from around the globe who share their personal ambitions of finding a cure for many of life's most debilitating and too often fatal disease"

"Thank you for considering buying our book, Personal Science: Learning to Observe. The book presents a step-by-step approach to exploring your personal questions with empirical methods. It contains no advice whatsoever on what treatments or medicines or diets or vitamins or exercises are worth trying. Instead, it offers meta-advice; that is, advice on how to know if the things that you try actually work the way you expect, and advice about how to develop reasonable new ideas of things to try."

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.

"Abstract The digital revolution is disrupting the ways in which health research is conducted, and subsequently, changing healthcare. Direct-to-consumer wellness products and mobile apps, pervasive sensor technologies and access to social network data offer exciting opportunities for researchers to passively observe and/or track patients 'in the wild' and 24/7. The volume of granular personal health data gathered using these technologies is unprecedented, and is increasingly leveraged to inform personalized health promotion and disease treatment interventions. The use of artificial intelligence in the health sector is also increasing. Although rich with potential, the digital health ecosystem presents new ethical challenges for those making decisions about the selection, testing, implementation and evaluation of technologies for use in healthcare. As the 'Wild West' of digital health research unfolds, it is important to recognize who is involved, and identify how each party can and should take responsibility to advance the ethical practices of this work. While not a comprehensive review, we describe the landscape, identify gaps to be addressed, and offer recommendations as to how stakeholders can and should take responsibility to advance socially responsible digital health research."

THE WELL is your complete ecosystem for wellness. We bring together Western doctors and Eastern healers to collaborate, developing online content and personalized products and experiences that empower our community to take greater agency for their health. At THE WELL, your health is integrated, proactive and personalized, leading to a more balanced you. Mike: THURS - breakfast at integrative wellness gym/spa club called THE WELL opening in Midtown. Met COO and marketing officers.

"Precise. Personalized. Prevention. Express your best DNA - the power to impact genetic expression is in your hands. Epigenetics is the study of how lifestyle & environment influence the expression of your genes." OUR MISSION is to empower and inspire providers and patients in optimizing genetic potential through precise, personalized protocols that positively impact patients' health and future generations.

"As a highly allergic and reactive person with multiple autoimmune conditions, I am likely at risk for Long Covid. I've closely followed the news about this mysterious and pervasive new condition and read about its debilitating symptoms. But until now, I hadn't personally known anyone with Long Covid."

"Objective: This randomized single-blind controlled trial tested the hypothesis that a prototype digital therapeutic developed to provide goal-based counseling with personalized passive and active game-based sound therapy would provide superior tinnitus outcomes, and similar usability, to a popular passive sound therapy app over a 12 week trial period. Methods: The digital therapeutic consisted of an app for iPhone or Android smartphone, Bluetooth bone conduction headphones, neck pillow speaker, and a cloud-based clinician dashboard to enable messaging and app personalization. The control app was a popular self-help passive sound therapy app called White Noise Lite (WN). The primary outcome measure was clinically meaningful change in Tinnitus Functional Index (TFI) between baseline and 12 weeks of therapy. Secondary tinnitus measures were the TFI total score and subscales across sessions, rating scales and the Client Oriented Scale of Improvement in Tinnitus (COSIT). Usability of the US and WN interventions were assessed using the System Usability Scale (SUS) and the mHealth App Usability Questionnaire (MAUQ). Ninety-eight participants who were smartphone app users and had chronic moderate-severe tinnitus (>6 months, TFI score > 40) were enrolled and were randomly allocated to one of the intervention groups. Thirty-one participants in the USL group and 30 in the WN group completed 12 weeks of trial. Results: Mean changes in TFI for the USL group at 6 (16.36, SD 17.96) and 12 weeks (17.83 points, SD 19.87) were clinically meaningful (>13 points reduction), the mean change in WN scores were not clinically meaningful (6 weeks 10.77, SD 18.53; 12 weeks 10.12 points, SD 21.36). A statistically higher proportion of USL participants achieved meaningful TFI change at 6 weeks (55%) and 12 weeks (65%) than the WN group at 6 weeks (33%) and 12 weeks (43%). Mean TFI, rating and COSIT scores favored the US group but were not statistically different from WN. Usability measures

"Sitting in freezer at Boston Children's Hospital is a drug you won't find anywhere else. It's called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That's because milasen was designed to treat a single patient-a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children's Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It's a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug."

"Personal Data Notebooks are interactive documents that combine text, graphics and data analysis. They live right in your browser and allow you to gain insight from the personal data that you have stored in your Open Humans account."

Eric Heckler's comment ACTION-TARGETED STUDIES: For these studies, the focus is more on vetting if an action is "worth it" for a person. An example of this is Sayali's dissertation, http://www.hack-your-health.org/.

"The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on the issue of diagnostic error. Misdiagnosis is quite common in Lyme disease and the consequences can be devastating. The SIDM website recently featured the personal story of LymeDisease.org's Lorraine Johnson, and the lessons learned from her own experience with diagnostic error. It is re-published here with SIDM's permission."

"Xconomy San Diego -  LunaDNA, a startup that is offering individuals company stock in exchange for personal genomic and health information in a bid to build a database that could help advance scientific research, is merging its research platform with the Genetic Alliance's Platform for Engaging Everyone Responsibly (PEER)."

"The Center for Integrative Medicine operates virtually across UC San Diego's departments and divisions, focusing on whole-person wellness by addressing your physical, as well as lifestyle, emotional, psychological and spiritual needs. Blending the science of medicine with the art of healing creates an environment throughout UC San Diego's community that not only supports the best in clinical care, but also offers opportunities for research, education and community partnerships."

"The UC San Diego Center for Mindfulness is a multi-faceted program of professional training, education, research and outreach intended to further the practice and integration of mindfulness into all aspects of society. We offer a broad range of mindfulness-based programs and initiatives. Whether your interest in mindfulness is personal or professional, on behalf of a young family member or your workplace, or if you are just curious about what it is, you are invited to explore our online home. The center is a program of the UC San Diego Center for Integrative Medicine and UC San Diego School of Medicine's Department of Family Medicine and Public Health."

"We provide NSF-funded, online and in-person resources and services. Our goal is to facilitate-at little or no cost-the sharing of experiences, technologies, and practices of those working with science gateways."

"Why leave all the details behind when you leave the doctor's office, or settle for a printed visit summary that only tells half the story? Abridge records your health care as it happened. You record your health story: - Conversations with doctors and nurses - Discussions about treatment options with family or friends who've been through it before - Personal observations about your symptoms and health "