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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

Abstract: Protocol design complexity, and associated study volunteer burden, negatively impact patient recruitment and retention as well as overall research and development productivity. Complex protocols reduce the willingness of potential clinical trial participants to enroll and reduce retention rates. There have been few systematic assessments of protocol design characteristics to determine the burden placed on study volunteers, although such an assessment would offer a compelling opportunity to optimize trial designs and improve recruitment and retention performance. To be useful, an assessment would need to be patient-centric, and focused on the factors that influence participation throughout the clinical trial. Such an assessment would also need to accommodate the unique cost-value trade-off compared with current treatment patterns that each participant makes when choosing to participate and remain in a clinical trial. This article proposes a new methodology to quantify patient burden: the clinical trial patient friction coefficient (PFC). A case example is provided to illustrate the utility of the PFC. A number of applications for the PFC are envisioned: standardizing patient burden assessment to evaluate clinical trial design feasibility, shedding light on the impact of patient burden on clinical trial economics and performance, and conducting sensitivity analyses to identify factors that most reduce patient burden and improve the performance and efficiency of clinical trials. Key words

Recommended by Tyler Orion- "As the future of our healthcare system moves towards electronic healthcare records, we need patient data ownership rights to protect patient care. 4 Principles 1. Patients co-own or fully own every health data point about themselves. 2. Health data generated about the patient by a provider is co-owned by both parties. 3. Health data generated by the patient is fully owned by the patient with a right to possess, share, sell, or destroy. 4. All uses of a patients' health data shall be consented in advance by the patient, other than uses required by law."

"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."

"Every patient has a story Medicine used to be a one-size fits all model. Disease X meant treatment Y. Doctors made decisions and patients listened.  Clinical trials were our only data source. But those days are over. Medicine has gotten personal.   Today, we know  that every patient has a unique medical story. The best care requires knowing those stories and the next generation of medical discovery requires compiling those stories into structured data sets.   That's why PicnicHealth works directly with patients to gather and manage complete, up-to-date medical records. That's also why with our PicnicAI platform, we go beyond serving patients directly, and partner with the most innovative Life Sciences companies to sponsor PicnicHealth accounts for groups of research volunteers. Only by putting patients in control of their own data will we move beyond fragmented, unstructured medical records for both individual patient benefit today and for the opportunity to meaningfully contribute to tomorrow's medicine."

Abstract: INTRODUCTION: Spasticity in chronic spinal cord injury is a condition that can have negative repercussions on the patient's quality of life. Its treatment is complex and sometimes the outcome is insufficient. Cannabinoids have recently been used in multiple sclerosis to successfully treat spasticity that is refractory to other therapies. AIM: To quantify the clinical response of a group of patients with spastic chronic spinal cord injury to the orally administered drug delta-9-tetrahydrocannabinol-cannabidiol (Sativex®) as medication for use in special situations. PATIENTS AND METHODS: The research consists of a six-month observational study in patients with chronic spinal cord injuries with refractory spasticity. The variables collected were: modified Ashworth scale, Penn spasm frequency scale, Numeric Rating Scale, and Visual Analogue Scale for pain. Additionally, clinical variables and side effects of the treatment were also collected. RESULTS: Fifteen patients took part in this study. A significant improvement was observed on three of the scales recorded: modified Ashworth scale (z = -2.97; p = 0.003), Penn spasm frequency scale (z = -2.76; p = 0.006) and Numeric Rating Scale (z = -3.21; p = 0.001). The use of the drug was withdrawn in two patients due to side effects. CONCLUSIONS: Sativex can be considered an alternative in patients with spasticity associated with chronic spinal cord injury for whom other therapeutic measures have been insufficient. Further studies need to be conducted before the use of this drug can be recommended and so as to define a complete profile of its long-term side effects.

We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients - annually reaching over 3.5 million unique visitors on our website. LymeDisease.org is grounded in the principles of patient empowerment, participation, and self-determination. We fight to make the patient voice stronger to support science-based advocacy bring about legislative change, and create a future where Lyme patients can receive the treatments they need to get well. LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.

"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."

"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."

"Beyond the EHR: Cultivating Patient Acquisition and Retention with Intelligent Engagement Wednesday, September 29, 2021 | 12:00-1:00pm CT" In this session you'll get the facts to support these talking points: * Your EHR doesn't target consumers likely to need care * Your EHR provides only a partial view of patients * Your EHR doesn't drive patient loyalty * Your patient portal is just one, gated touchpoint in your digital front door * Your population health system cannot engage patients in their care

"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."

"You can be an empowered patient or advocate by knowing the basics of HIPAA and having the confidence to request records from providers. Here are some myths about HIPAA and how they affect you, the patient."

"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."

"Meet Milli A self-teaching personalized medical intelligence platform built from real-time analysis of millions of patient/doctor interactions. The Medical Intelligence Platform™ makes it easy to capture, aggregate, and analyze comprehensive patient data with human-augmented Artificial Intelligence. We provide doctors with suggestions for the likely underlying dysfunctions that lead to disease, recommendations for follow up tests, and predictions for which intervention will be most effective for each patient. Our Virtual Health Assistant then provides intervention support to the patient and tracks their adherence and medical outcomes. This closed-loop process enables the platform to systematically learn from every provider/patient medical encounter to learn how to better prevent and reverse disease."

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.

"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."

"For each patient, the Humanwide care team carefully documented factors that we know influence health, but which often aren't incorporated into primary care today, including stress levels, sleep habits, and environmental exposures. Patients also received genetic screenings and pharmacogenomic testing (which looks at a patient's genes to predict how they will react to a variety of medicines). In addition, each patient was given four digital health devices-a pedometer, a digital scale, a blood pressure cuff, and a glucometer to measure blood sugar-to track and measure their health and progress throughout their daily lives. All of this data was fed into patients' electronic health records and discussed at regular check-ins with their physicians."

"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 "