PHE - Resources

Recommended by DeAunne Denmark, MD, PhD: "... this excellent international society and expert consensus site regarding anti-hypertensives and ACE2, the protein used by both SARS for host cell.

"Thankfully, there are many things we can do as individuals and communities that may be helpful. It is important to remain calm and think clearly. Remember that our positive attitudes go a long way in protecting health, enriching our daily lives, and supporting the ones we love. Here is a list of things one can do at home to help in these uncertain times:"

"Flattening the curve is not an option for the United States, for the UK or Germany. Don't tell your friends to flatten the curve. Let's start containment and stop the curve." Strong article with data visualizations from a Phd working out of MIT/Harvard.

""This year, patients, families, caregivers, medical professionals, NORD staff and other stakeholders participated in over 25 Rare Disease Day advocacy events in 23 states.""

"David Fajgenbaum, MD, MBA, MSc, is the co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN) and one of the youngest individuals to be appointed to the faculty at Penn Medicine, where he is an Assistant Professor of Medicine in Translational Medicine & Human Genetics, Founding Director of the Center for Study & Treatment of Castleman & inflammatory Lymphadenopathies (CSTL). An NIH-funded physician-scientist, he has dedicated his life to discovering new treatments and cures for deadly disorders like idiopathic multicentric Castleman disease (iMCD), which he was diagnosed with during medical school. As common as ALS and more deadly than lymphoma, iMCD involves the immune system attacking and shutting down the body's vital organs such as the liver, kidneys, bone marrow, and heart. After spending months hospitalized in critical condition, having his last rites read, and having four deadly relapses, he is now in his longest remission ever thanks to a treatment that he identified in the lab."

"Master Liu is sharing Zhineng Qigong theories, principles and methods since over 40 years and was trained directly by Dr Pang Ming during the rigorous teachers' program in the Huaxia Zhineng Qigong Clinic & Training Center - globally renowned as the first "medicine-less hospital in the world"."

Master Liu's Facebook Group.

"What is disulfiram and why is it sparking excitement in Lyme community?"

"FasterCures is an action tank that works to speed and improve the medical research system. 10,000 diseases. 500 treatments. We have work to do."

"Optimize for Time, Cost, Risk, and Patient Centricity Think of Trials.ai as the best second opinion you've ever had. The result is an optimized trial that ultimately enables a new treatment to reach patients faster- all through the lens of time, cost, and patient centricity powered by our Patient Burden Index™. ‍ Our system also looks for potential pitfalls that might need to be flagged and adjusted. Get feedback about how each decision you make affects:"

"The Four Agreements are: Be Impeccable With Your Word. Don't Take Anything Personally. Don't Make Assumptions. Always Do Your Best."

Koolulam mass singing event at Tower of David Museum joins disparate voices in a show of unity coinciding with the Muslim holiday of Eid al-Fitr.

"In this podcast, IFM's Director of Medical Education, Dan Lukaczer, ND, interviews researcher, educator, and clinician David Rakel, MD, on the power of empathy, compassion, the placebo effect, and the patient story. In particular, they explore how empathy and sympathy can lead to burnout, while compassion can be restorative." shared by Vicky Newman

"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."

"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."