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"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."

Recommended by DeAunne Denmark, MD, PhD. Eric Topol's professional background: Gary & Mary West Endowed Chair of Innovative Medicine, Scripps Research Executive VP, Scripps Research Professor, Molecular Medicine, Scripps Research Director & Founder, Scripps Research Translational Institute Department of Molecular Medicine California Campus

"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."

"Despite their capacity to acquire and pass on an array of debilitating pathogens, research on ticks has lagged behind other arthropod vectors, such as mosquitoes, largely because of challenges in applying available genetic and molecular tools. CRISPR-Cas9 is transforming non-model organism research; however, successful gene editing has not yet been reported in ticks. Technical challenges for injecting tick embryos to attempt gene editing have further slowed research progress. Currently, no embryo injection protocol exists for any chelicerate species, including ticks. Herein, we report a successful embryo injection protocol for the black-legged tick, Ixodes scapularis, and the use of this protocol for genome editing with CRISPR-Cas9. We also demonstrate that the ReMOT Control technique could be successfully used to generate genome mutations outside Insecta. Our results provide innovative tools to the tick research community that are essential for advancing our understanding of the molecular mechanisms governing pathogen transmission by tick vectors and the underlying biology of host-vector-pathogen interactions."

Suggested by Gina Soloperta Abstract Background: Due to striking disparities in the implementation of healthcare innovations, it is imperative that researchers and practitioners can meaningfully use implementation determinant frameworks to understand why disparities exist in access, receipt, use, quality, or outcomes of healthcare. Our prior work documented and piloted the first published adaptation of an existing implementation determinant framework with health equity domains to create the Health Equity Implementation Framework. We recommended integrating these three health equity domains to existing implementation determinant frameworks: (1) culturally relevant factors of recipients, (2) clinical encounter or patient-provider interaction, and (3) societal context (including but not limited to social determinants of health). This framework was developed for healthcare and clinical practice settings. Some implementation teams have begun using the Health Equity Implementation Framework in their evaluations and asked for more guidance. Methods: We completed a consensus process with our authorship team to clarify steps to incorporate a health equity lens into an implementation determinant framework. Results: We describe steps to integrate health equity domains into implementation determinant frameworks for implementation research and practice. For each step, we compiled examples or practical tools to assist implementation researchers and practitioners in applying those steps. For each domain, we compiled definitions with supporting literature, showcased an illustrative example, and suggested sample quantitative and qualitative measures. Conclusion: Incorporating health equity domains within implementation determinant frameworks may optimize the scientific yield and equity of implementation efforts by assessing and ideally addressing implementation and equity barriers simultaneously. These practical guidance and tools provided can assist implementation rese

"We strive to educate and help patients, their family members, and members of the general public that are interested in clinical research understand the process and what it means to be a clinical research participant. We then help locate ongoing clinical trials through our free service called Search Clinical Trials, and honor those who have participated in clinical research."

new project apollo patient. Co-Founder & President Company NameWholistic Research and Education Foundation Dates EmployedMay 2017 - Present Employment Duration1 yr 2 mos LocationGreater San Diego Area Wholistic Research and Education Foundation is a California-based nonprofit dedicated to exploring the health benefits of CBD-rich therapeutics. Our mission is to fund clinical and scientific research to better understand the "if, how and why" behind the potential healing power of hemp and cannabis across a multitude of ailments, as well as work to increase safe and legal access to those in need via advocacy and education. Co-Founder Company NameMana Artisan Botanics Dates EmployedMay 2017 - Present Employment Duration1 yr 2 mos LocationKona, Hawaii Mana Artisan Botanics is a purpose-driven hemp company based on the Big Island of Hawaii. We offer pure hemp extracts infused with sustainably grown Hawaiian herbs and spices - nature's mana. Each product is hand crafted artisan style, in small batches. We take great care to source our ingredients from conscientious farmers, supporting local and organic whenever available. All of our products are simple, pure and good for body and soil.

Camille Nebeker: I'm writing a paper on mHealth and research ethics across regulated and unregulated sectors. Came across an article that you may appreciate - it's basically saying that people need to be trained when conducting scientific research. It was aimed at clinicians - not citizen scientists:

"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 allâ€

Recommended by Trish Makowiak: How can you tell if the bold headlines seen on social media are truly touting the next big thing or if the article isn't worth the paper it's printed on? Understanding Medical Studies, will provide you with the tools and skills you need to critically interpret medical studies, and determine for yourself the difference between good and bad science. The course covers study-design, research methods, and statistical interpretation. It also delves into the dark side of medical research by covering fraud, biases, and common misinterpretations of data. Each lesson will highlight case-studies from real-world journal articles. By the end of this course, you'll have the tools you need to determine the trustworthiness of the scientific information you're reading and, of course, whether or not your Facebook friend is wrong. This course was made possible in part by the George M. O'Brien Kidney Center at Yale.

"About this Research Topic Healthcare narratives (such as clinical notes, discharge letters, nurse handover notes, imaging reports, patients posts on social media or feedback comments, etc.) have been used as a key communication stream that contains the majority of actionable and contextualised data, but which - despite being increasingly available in a digital form - is still not routinely analysed, and is rarely integrated with other healthcare data on a large-scale. There are many barriers and challenges in processing healthcare free text, including, for example, the variability and implicit nature of language expressions, and difficulties in sharing training and evaluation data. On the other hand, recent years have witnessed increasing needs and opportunities to process free text, with a number of success stories that have demonstrated the feasibility of using advanced Natural Language Processing to unlock evidence contained in free text to support clinical care, patient self-management, epidemiological research and audit."

"Abstract Background: Wearables refer to devices that are worn by individuals. In the health care field, wearables may assist with individual monitoring and diagnosis. In fact, the potential for wearable technology to assist with health care has received recognition from health systems around the world, including a place in the strategic Long Term Plan shared by the National Health Service in England. However, wearables are not limited to specialist medical devices used by patients. Leading technology companies, including Apple, have been exploring the capabilities of wearable health technology for health-conscious consumers. Despite advancements in wearable health technology, research is yet to be conducted on wearables and empowerment. Objective: This study aimed to identify, summarize, and synthesize knowledge on how wearable health technology can empower individuals to take greater responsibility for their health and care. Methods: This study was a scoping review with thematic analysis and narrative synthesis. Relevant guidance, such as the Arksey and O'Malley framework, was followed. In addition to searching gray literature, we searched MEDLINE, EMBASE, PsycINFO, HMIC, and Cochrane Library. Studies were included based on the following selection criteria: publication in English, publication in Europe or the United States, focus on wearables, relevance to the research, and the availability of the full text. Results: After identifying 1585 unique records and excluding papers based on the selection criteria, 20 studies were included in the review. On analysis of these 20 studies, 3 main themes emerged: the potential barriers to using wearables, the role of providers and the benefits to providers from promoting the use of wearables, and how wearables can drive behavior change. Conclusions: Considerable literature findings suggest that wearables can empower individuals by assisting with diagnosis, behavior change, and self-monitoring. However, greater adoption

"Today, the White House Office of Science and Technology Policy (OSTP) updated U.S. policy guidance to make the results of taxpayer-supported research immediately available to the American public at no cost. In a memorandum to federal departments and agencies, Dr. Alondra Nelson, the head of OSTP, delivered guidance for agencies to update their public access policies as soon as possible to make publications and research funded by taxpayers publicly accessible, without an embargo or cost. All agencies will fully implement updated policies, including ending the optional 12-month embargo, no later than December 31, 2025."

"Multiple Chronic Conditions Community: People who live with multiple complex, chronic, persistent, painful and often mystifying health conditions are not only resilient but wise due to the expertise gained from managing MCCs and navigating healthcare systems. Comparative Effectiveness Research (CER) can benefit from their expertise. People who help patients manage their health whether as professional care providers, insurance providers, policy makers, researchers, family or friends who care each day about these patients are also considered members of the MCC community. Building a diverse multi-stakeholder team to design CER studies to improve health outcomes for MCC patients requires a thoughtful and person centered approach to building a research community. "

"Learn more Click here to subscribe to the CTRI News and Funding Opportunities monthly newsletter. Learn more   Director's Message I am pleased to announce the availability of the ACTRI Virtual Research Desktop (VRD) for UC San Diego Health research scientists and staff. The service is a collaboration between ACTRI and UC San Diego Health System Information Services (IS). The VRD is a HIPAA-compliant virtual desktop that operates in a secure private cloud server environment managed by the ACTRI and housed in a UC San Diego data center. Read more from Director Gary S. Firestein, MD"

"Our mission is to improve public health through prevention research, education, and clinical care." The department's clinical care and community-based initiatives aim to transform health care in San Diego through the practice of family medicine, preventive medicine, sports medicine, integrative medicine, and research that is practice-based. We have a robust portfolio of innovative clinical and public health focused research projects that address contemporary public health challenges through tools from biostatistics/bioinformatics, behavioral medicine, epidemiology, policy, and dissemination and implementation science. We have established Centers of Excellence in cardiovascular epidemiology, health behavior and equity, integrative health, tobacco control, wireless and population health, and women's health. Innovative, interdisciplinary partnerships are ongoing with Qualcomm Institute/Calit2, Moores Cancer Center, the Scripps Institute of Oceanography, Center for Microbiome Innovation, and many other departments.

Download the Mydatahelps app -- "When your heart beats faster than usual, it can mean that you're coming down with a cold, flu, coronavirus, or other viral infection. That's the conclusion of recent medical research. So wearable devices that measure your resting heart rate-made by Apple, Fitbit, Garmin, and others-might help scientists spot viral outbreaks, and also give you more insight into your own health. At Scripps Research, we've designed DETECT (Digital Engagement & Tracking for Early Control & Treatment), a study that will monitor your heart rate and allow you to record symptoms like fever or coughing."

"San Diego philanthropist Denny Sanford made a major gift to UC San Diego for research into the biology of compassion, the university said on July 22, adding that such research could help train future generations of physicians."

"Current research and privacy regulations, which were designed for clinical research and for small-data studies of the past, cannot support creation of the vast data resources that 21st-century science needs. These regulations enshrine data-holders (hospitals, insurers, and other entities that store people's data) as the prime movers in assembling large-scale data resources for scientific use and rely on mechanisms - such as de-identification of data and waivers of individual consent - that are unworkable going forward. They shower individuals with unwanted, paternalistic protections - such as barriers to access to their own research results - while denying them a voice in what will be done with their data."

"In 2009, Ms. Leon went to the WomenHeart Science and Leadership Symposium at the Mayo Clinic, where she met Dr. Sharonne N. Hayes, a professor of cardiovascular medicine at Mayo. At that time, the largest study on SCAD included 43 patients. "I walked up to Dr. Hayes and told her we had 70 people, and we wanted research," Ms. Leon recalled. "She was like, 'Wow.'" "Everything I learned about SCAD in my medical training was wrong," Dr. Hayes said. By 2010, with the help of Dr. Hayes, and subsequently SCAD Research Inc., an organization founded by Bob Alico, who lost his wife to SCAD, Dr. Hayes devised an innovative way to do research, using online networks of far-flung patients and analyzing genetic and clinical data. "We never imagined there would be 1,000 female patients in our virtual registry," Dr. Hayes said."