PHE - Resources

"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."

Extensive slide-deck from Dr. Sharon Hausman-Cohen

"  Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST"

"Our Co-Founder and Medical Director, Dr. Sharon Hausman-Cohen, received both her master's degree and medical degree from Harvard Medical School. She is board-certified in Family Medicine, a Fellow of the American Board of Integrative and Holistic Medicine, and board-certified in Integrative Medicine through the American Board of Physician Specialties.*  She has been practicing Full Spectrum Family Medicine and Integrative Medicine for more than 20 years."

American Nutrition Association The Genomics of Obesity Sharon Hausman-Cohen, MD The modernization of our society has contributed to higher rates of obesity through an environment that promotes increased caloric intake and decreased physical activity. However, recent studies suggest that genetics may contribute to 40-70% of obesity with the discovery of more than 50 genes that are strongly associated with obesity. Changes in the environment have significantly increased obesity rates over the last 20 years, and the presence or absence of genetic factors can protect us from or predispose us to obesity in conjunction with diet and lifestyle factors that support healthy weight. In this webinar, Dr. Hausman-Cohen will * Describe how the leptin pathway is interrelated to the functions of genes in the hypothalamus, as well as how inflammation, fat absorption and insulin can contribute to obesity. * Discuss how specific food intake can be linked to obesity risk and how weight loss can be individualized based on a patient's genomics. * Attain practical ways of discussing various obesity interventions and patterns with patients - whether or not practitioners have access to patient genomic data. Category"

Background With the rise of precision medicine efforts worldwide, our study objective was to describe and map the emerging precision medicine landscape. A Google search was conducted between June 19, 2017 to July 20, 2017 to examine how "precision medicine" and its analogous terminology were used to describe precision medicine efforts. Resulting web-pages were reviewed for geographic location, data type(s), program aim(s), sample size, duration, and the key search terms used and recorded in a database. Descriptive statistics were applied to quantify terminology used to describe specific precision medicine efforts. Qualitative data were analyzed for content and patterns.

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

"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."

"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."

he UC San Diego Design Lab works on major societal issues, such as large-scale education, automation, healthcare, visualization of complex phenomena and data, social interactions, citizen science, and the ethical issues that are of ever-increasing importance.

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.