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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:

Camille Nebeker* 11/13

Camille Nebeker: And another that my colleague, Eleanor wrote entitled the Rise of the New Bio-Citizen speaks to the need for governance and safety considerations when doing DIY research.

Featuring Camille Nebeker

The link below shows 3 upcoming webinars that may be of interest. The one on June 20 will feature Camille Nebeker and Gary Wolf speaking about the ethical dimensions of participant-lead research. The webinars are free, but please note that the start times are given in EDT. So if you plan to register for their workshop, it will be at 10:00 am that day.

"Camille Nebeker, Bethany Weisberg, Eric Hekler, and Michael Kurisu Frontiers in Digital Health - This paper is also posted on our PHE Website

Camille and Bethany writing a journal piece for this site.

"With approximately 133M Americans (more than 40% of the US population) suffering from one or more chronic diseases, the healthcare community is looking for more effective and efficient ways to manage chronic diseases. Part of that pursuit is in finding sustainable ways to help patients better understand their conditions and manage their health by empowering patients, connecting them to information, care, and therapies in ways they want. Join fellow innovators to work on a challenging, multi-faceted, meaningful opportunity to advance clinical care, quality of life, and outcomes for nearly half the US. How can we improve patient literacy and clinical understanding? How do we help patients feel more in-control of their medical care? What can be done to help patients understand when and where they should seek care? These are just some of the pain points begging for thoughtful, tech-enabled solutions."

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.

"  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"

"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€

"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."

"ReCODE Health is here to support technologists, researchers, ethicists, regulators, institutions and participants involved in the digital health research process. Our value proposition is to increase awareness of ethical principles and practices from the earliest stages of technology design to the deployment of digital health research."

"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."

"AMIA 2020 VIRTUAL ANNUAL SYMPOSIUM The Annual Symposium builds on more than 40 years of sharing pioneering research and insights for leveraging information to improve human health. Topics of interest span the spectrum from deciphering the underpinning phenomena of disease, to managing information and communications for improving patient care, to tracking the health of populations. The AMIA 2020 Annual Symposium showcases the latest innovations from the community of biomedical informatics researchers and practitioners. The AMIA 2020 Virtual Annual Symposium brings together informatics professionals from diverse backgrounds committed to transforming health through informatics. From the leading experts in the field, to the students eager to get started, the AMIA 2020 Virtual Annual Symposium provides an opportunity to learn and to grow professionally, to network, and to flesh out ideas with colleagues and start new collaborations."

"About AMIA - American Medical Informatics Association ® Discovering Health Insights. Accelerating Healthcare Transformation. AMIA ® (American Medical Informatics Association ®) is a community committed to the vision of a world where informatics transforms people's care. Over the last 35 years, the use of informatics has grown exponentially to improve health and to make better healthcare decisions. Today, informatics is the key to accelerating the current goals of healthcare reform. Every day millions of people benefit from informaticians' ability to accelerate healthcare's transformation by collecting, analyzing and applying data directly to care decisions. Data produced throughout health and healthcare is the driving force of informatics and its ability to innovate critical advancements that directly benefit people. AMIA's members are critical to discovering these insights, which is why AMIA is committed to being the professional home for the informaticians of today and the driver of informatics' future."

"Alzheimer's Advocate, Family Caregiver, and Health Policy/Delivery/Research/Technology Thought Leader"