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Recommended by Tyler: "Project Patient Voice has been initiated by the Oncology Center of Excellence to give patients and health care professionals unique information on symptomatic side effects to better inform their treatment choices," said FDA Principal Deputy Commissioner Amy Abernethy, M.D., Ph.D. "The Project Patient Voice pilot is a significant step in advancing a patient-centered approach to oncology drug development. Where patient-reported symptom information is collected rigorously, this information should be readily available to patients." "I'm sure this will be useful - and help cancer patients better evaluate treatment options, based on other patients' experience, especially around side effects. I think this is also worth curating." Thanks! Tyler

"At HealthSTAR Patient Engagements (HPE), we are both brand partners and advocates for the patient. We bring innovation and experience to patient engagement with a caring approach. Leveraging over two decades of commercial success and proprietary technologies, HPE uses a proven, holistic approach to patient engagement, from strategy and content development to support and logistical services, with a comprehensive foundation of compliance, data management, and analytics. We call it the Ecosystem of Patient Engagement. "

"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."

"Thesis: "Patient Empowerment through Timely Information" On Friday, 1 October 2021, Thomas Timmers (CEO) successfully defended his doctoral PhD "Patient Empowerment through Timely Information" at Radboudumc.   He examines the impact of the provision of timely information using an app to increase patients' self-management throughout their treatment. The thesis includes a systematic review and the results of 2 large multi-center RCT's. Furthermore, a qualitative study was performed to determine what kind of timely education patients need."

"Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients. Topics on the show include the emergence of personalized medicine and breakthroughs in genomics advances for aging in place using big data from wearables and sensors transparency in the medical marketplace challenges for connected health entrepreneurs The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors."

"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."

"Discussion This study found that in patients who had recovered from COVID-19, 87.4% reported persistence of at least 1 symptom, particularly fatigue and dyspnea. Limitations of the study include the lack of information on symptom history before acute COVID-19 illness and the lack of details on symptom severity. Furthermore, this is a single-center study with a relatively small number of patients and without a control group of patients discharged for other reasons. Patients with community-acquired pneumonia can also have persistent symptoms, suggesting that these findings may not be exclusive to COVID-19.6 Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long-lasting effects is needed."

Welcome to the Empowered Patient Podcast with Karen Jagoda. This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients. Topics on the show include the emergence of personalized medicine and breakthroughs in genomics advances for aging in place using big data from wearables and sensors transparency in the medical marketplace challenges for connected health entrepreneurs The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors.

"n the nearly 20 years since the publication of this report, numerous stakeholders have sought to reinvent and redesign the US health care system to make it, as the report called for, safe, effective, patient-centered, timely, efficient, and equitable. Researchers have engaged in rigorous and innovative assessments to identify promising approaches. Policy makers, practitioners, and payers have made changes to health policy and clinical practice and instituted various payment reforms and demonstration programs. Yet, despite the tremendous work of the past 20 years, we have not achieved a health care system that is truly patient centered and equitable."

"Patient-Focused Drug Development (PFDD) is a process that provides patients and caregivers impacted by a rare disease the opportunity to share their experience with those directly involved in the drug development process. The Rare Disease Cures Accelerator, a Data Analysis Platform (RDCA-DAP®), a collaboration between the National Organization for Rare Disorders (NORD®), Critical Path Institute (C-Path), and the US Food and Drug Administration (FDA), can strengthen PFDD efforts to support life-saving and life-changing outcomes. This webinar is intended for patients, caregivers, advocates, students, and those who are interested in learning more about PFDD as well as efforts to accelerate research and drug development in rare diseases, such as the RDCA-DAP. For more information on RDCA-DAP, visit: www.rarediseases.org/rdca-dap. SHOW LESS "

"Just Putting Patients At The Center Of Health Care Is Not Enough To Improve Care"

"In a high-performing health care system, measurement drives progress toward safe, effective, efficient, timely, equitable, and patient-centered care. Measurement helps to identify priority areas for improvement, evaluate which changes make a difference in performance, and promote accountability. Measurement informs how health care is paid for, how resources are allocated, and, increasingly, how patients and their care teams make care decisions. "

"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. "

"our Choices and Information Sharing Smart Patients gives you important choices about controlling your personal information - whom you let see it, how much, and when. We encourage you to make these choices thoughtfully. Your choices include: Whether you want to browse the website anonymously or create an account and provide us your personal information; Whether you want to join Community Discussion relating to a particular condition; How much health or other personal information you want to share with other patients and caregivers through Community Discussion; Whether you want to participate in surveys we may offer from time to time. The nature of the survey and the form in which the results will be disclosed will be explained to you in advance; Whether you want to participate in any other opportunity we may offer to share your health information with others. For example, if we think you have written something in a Community Discussion that would be particularly helpful to others facing the same condition, we may invite you to post an excerpt from your comments on our public website. Any such opportunity would be clearly explained to you in advance, and whether you decide to share your information would be entirely up to you; Discontinuing active participation or closing your account at any time."

RARE‐X is committed to transforming rare disease by ensuring that patient communities, clinicians, researchers, and drug developers have access to the right data at the right time. At the heart of RARE‐X's approach is a belief that patients should own their data. In July 2021, RARE‐X launched itsfirst set of rare disease pilot programs on its data collection platform supported by data governance and consent that will ensure participants who spend the time to enter their data are able to share it with those stakeholders they choose.

"VIP NeuroRehabilitation Center is a non-profit 501(c)(3) organization, run by and for the patients! We bring top quality outpatient NeuroRehabilitation care to disabled military, veterans, children, and to ALL who are in need.  Located in San Diego, California, we treat adult and pediatric patients, from ages 4 years old and up. Our focus is on those who have difficulty moving secondary to Stroke, Multiple Sclerosis (MS), Brain Injury, ALS, Cerebral Palsy, Spinal Cord Injury, and multiple traumas."

"Sharfstein, too, thinks that it's fair to criticize the federal government for not recognizing that its pandemic plans had a single point of failure. The C.D.C. quickly developed a working test, and it was understandable, at some level, that people at the Centers thought that fixing the faulty reagents for the public-health labs would be faster than shifting to an entirely different protocol. Nevertheless, Sharfstein said, "Why are we relying only on the C.D.C.? What the F.D.A. could have done, and eventually did do, is say, 'You can use other approaches.' " Even so, he said, "I don't think it's quite fair to totally blame the F.D.A. for this. The F.D.A. can design an approach to support the public-health strategy, but someone has to tell F.D.A. the public-health goal." The delay in clearly establishing those goals, he said, shows why the decision to shut down the N.S.C. directorate was so consequential. "People talk about, like, why does it matter that they closed the White House office on pandemic preparedness? This is one reason.""

Lab100 gives patients a comprehensive health risk assessment and biometric screening. The goal is to empower patients to track their health over time and to learn how their behavior and lifestyle are impacting their health in a very tangible way.

Recommended by Tyler Orion: "PCORI funds studies that can help patients and those who care for them make better-informed healthcare choices."

Tyler - Here are some important FAQs https://help.pcori.org/hc/en-us/categories/200010230-Applicant-Resources I think we might consider a project under their "Accelerating Patient-Centered Outcomes Research & Methodological Research" which is explained here https://www.pcori.org/about-us/our-programs/clinical-effectiveness-and-decision-science