PHE - Resources

"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

"Summary Wearable activity trackers offer an appealing, low-cost tool to address physical inactivity. This systematic review of systematic reviews and meta-analyses (umbrella review) aimed to examine the effectiveness of activity trackers for improving physical activity and related physiological and psychosocial outcomes in clinical and non-clinical populations. Seven databases (Embase, MEDLINE, Ovid Emcare, Scopus, SPORTDiscus, the Cochrane Library, and Web of Science) were searched from database inception to April 8, 2021. Systematic reviews of primary studies using activity trackers as interventions and reporting physical activity, physiological, or psychosocial outcomes were eligible for inclusion. In total, 39 systematic reviews and meta-analyses were identified, reporting results from 163 992 participants spanning all age groups, from both healthy and clinical populations. Taken together, the meta-analyses suggested activity trackers improved physical activity (standardised mean difference [SMD] 0·3-0·6), body composition (SMD 0·7-2·0), and fitness (SMD 0·3), equating to approximately 1800 extra steps per day, 40 min per day more walking, and reductions of approximately 1 kg in bodyweight. Effects for other physiological (blood pressure, cholesterol, and glycosylated haemoglobin) and psychosocial (quality of life and pain) outcomes were typically small and often non-significant. Activity trackers appear to be effective at increasing physical activity in a variety of age groups and clinical and non-clinical populations. The benefit is clinically important and is sustained over time. Based on the studies evaluated, there is sufficient evidence to recommend the use of activity trackers."

"You are not alone. Navigating illness can be isolating, but it doesn't have to be. At Health Story Collaborative, we believe in story sharing for health. We are patient-centered, research-based, and committed to the therapeutic power of storytelling. We strive to create a space where story sharing is valued and honored within the healthcare system. Explore the site, listen to stories and consider crafting and sharing your own. "

"www.education.med.bc.ca" Our mighty EdTech team produces cinematic educational experiences: video, audio, interactive, simulated, narrative & virtual. We welcome collaborations from our international learning community. The Digital Solutions' EdTech team facilitates innovation by UBC Medicine learners and faculty. Website: www.education.med.bc.ca Subscribe: https://www.youtube.com/ubcmedvid?sub_confirmation=1 UBCMLN Podcast Network: https://tinyurl.com/ubcmedicinelearningnetwork Follow us for more content on all social media channels: @ubcmedvid The UBC Medical Program is situated on the traditional territories of indigenous peoples. We honour our hosts' graciousness for the students who seek knowledge here. © 2013-2022 UBC Faculty of Medicine, University of British Columbia. Vancouver, Canada. All rights reserved. Reproduction & distribution of this presentation without written permission from UBC Faculty of Medicine is prohibited.

"There are 7,000 rare diseases but less than 10% have an FDA approved treatment There are 30 million rare disease patients in the US but 95% of physicians feel unprepared to treat them There are 6,093 US hospitals, but rare disease patients travel an average of 563 miles just to get a diagnosis ​ It's Time to Listen to the Rare Disease Community."

Abstract As biometric technology relies on bodily, physical information, it is among the more intrusive technologies in the contemporary consumer market. Consumer products containing biometric technology are becoming more popular and normalized, yet little is known about public perceptions concerning its privacy implications, especially from the perspective of human agency. This study examines how people perceive biometric technologies in different societal contexts and via different agents in control. Our study revealed that, in large part, people's perceptions of biometric technology are context-dependent, based on who retrieves and who benefits from the information and the situation where the data are collected. Participants were much more comfortable with more intrusive biometric technology in airport security than in a grocery store, and if it was employed to improve their health. We conclude by considering the implications of the survey for new threats to personal privacy that arise out of emerging technologies. Keywords biometric, facial recognition, DNA identification, digital privacy, digital data sharing, emerging technology, surveillance technology, contextual integrity, situational privacy

"Findings of pilot show nearly 50% of hypertensive patients and almost 60% of Type 2 Diabetes patients reach their control goals in just the first few months of participation"

"Understanding how life uses time to improve health, education, and the world. Life on Earth is the living embodiment of information's value. Now that individuals generate data across time with digital trails and wearable sensors, we can begin to see how humans evolved to use time to orchestrate their bodies. Modern life often conflicts with natural time by imposing social demands that go against the rhythms of our bodies. The more we learn about time in our lives (and the lives of all organisms), the more informed can be our personal and societal choices about how we use time in this modern context for which we are not so well adapted. Ongoing projects are listed below, but are not exhaustive. While they may seem disparate, they are united in generating examples of the opportunities that incorporating biological time seems to offer across fields and across populations. I encourage any and all to reach out if they are interested in biological time and/or how data can influence your life. Student projects are welcome, as are academic and private collaborations with a goal of sharing information."

"Sustainability of Weight Loss Through Smartphone Apps: Systematic Review and Meta-analysis on Anthropometric, Metabolic, and Dietary Outcomes"

"Life science companies seeking further advances toward a truly patient-centric future should consider working with an external partner that has extensive experience and a reliable, transparent and proven information portfolio. Leveraging core data linked and integrated with data generated by patients, and providing access to novel, on-demand data sources through a network of curated data partners provides enriched data that goes beyond the patient experience with a particular brand. By understanding the full details of the patient journey, optimal engagement of patients and HCPs can be enabled, thereby delivering the right treatment to the right patient, supporting adoption and adherence and achieving the ultimate goal of patient-centricity."

"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."

"Abstract This study examined the adherence to and the potential benefit of Kundalini yoga (KY) for post-treatment Lyme disease syndrome (PTLDS). Participants were randomly assigned to 8 weeks of a KY small-group intervention or a waitlist control (WLC). Adherence was measured as attendance at KY group sessions. Primary outcomes assessed pain, pain interference, fatigue, and global health. Secondary outcomes assessed multisystem symptom burden, mood, sleep, physical and social functioning, cognition, and mindfulness. Linear mixed models were used to test changes in outcomes over time as a function of group assignment; intercepts for participants were modeled as random effects. Although the target sample size was 40 participants, the study concluded with 29 participants due to recruitment challenges. No KY participants dropped out of the study, and participants attended 75% of group sessions on average, but WLC retention was poor (57%). Regarding primary outcomes, there was no significant interaction between group and time. Regarding secondary outcomes, there was a significant interaction between group and time for multisystem symptom burden (p < 0.05) and cognition (p < 0.01); KY participants reported improved multisystem symptom burden and cognition over the course of the study compared to WLC participants. To enhance recruitment and retention, future trials may consider expanding geographic access and including supportive procedures for WLC participants. This preliminary study supports the need for a larger study to determine if KY reduces multisystem symptom burden and enhances cognition among people with PTLDS."

"No matter what our illness - and we are all ill at some point or another - from the common cold to COVID, to the illness that will end our life, there are seeds of personal evolution and the potential to initiate ourselves into a new way of being after our illness is over. "

"Why are some people more resilient than others-and can it be taught? By Lorna Collier November 2016, Vol 47, No. 10 Print version: page 48"

"The simplest thing you can do to start your day happier by focusing on the positive and becoming more mindful. The Five Minute Journal's guided and structured exercises will lead you down a path toward an enhanced version of the person you already are. "

"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. "

VLA15 is currently the only active vaccine program in clinical development against Lyme disease. VLA15 is a multivalent recombinant protein vaccine that targets six serotypes of Borrelia representing the most common pathogenic strains found in the United States and Europe. Valneva has completed recruitment and reported initial results for two Phase 2 clinical trials [5,6] of VLA15 in over 800 healthy adults and in which Valneva observed high levels of antibodies against all six serotypes. Valneva announced a collaboration with Pfizer for late phase development and, if approved, commercialization of VLA15 [7]. As part of its collaboration with Pfizer, Valneva accelerated the pediatric development of VLA15 with an additional Phase 2 clinical trial initiated in March 2021. In July 2021, Pfizer and Valneva announced recruitment completion for VLA15-221 with a total of 625 participants, 5 to 65 years of age [8]. The VLA15 program was granted Fast Track designation by the U.S. Food and Drug Administration (FDA) in July 2017 [9].

"Autoimmune diseases are complex. Advancing treatments doesn't have to be. From your very first symptom to your eventual diagnosis and treatment, your unique autoimmune journey has accumulated valuable data that tells a story that could lead to better treatments. Unfortunately, this story is trapped in various health systems and sits there, unused. As the patient, you have the power to unlock this data. With your permission, DrugViu will find and consolidate all your medical records and return them back to you on your own secure portal, for free. There, you'll have a holistic view of your entire health history, while also having the power to share your records with current and future medical providers. You'll also have the option of contributing your de-identified and anonymized data to scientists and doctors working to find better treatments and improve the diagnosing process. Together, we will power tomorrow's cures."