Group items tagged

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

"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."

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

"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. "

"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."

"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 "

Scientists like their insights captured via validated instruments that organize data into quantifiable outputs that can be measured and managed. Patients want to tell stories, share anecdotes, and talk about the qualitative factors that affect their quality of life. These disparate communication preferences have made it difficult for the two groups to engage, or for scientists to translate those qualitative stories into systematic assessments that quantify the burden placed on study volunteers.

Recommended by Kabir Kadre: "Abstract Importance  Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers."

Recommended by Meg Sweeney © 2020 Press Ganey Associates LLCIn a Press Ganey analysis of 350,000 comments from ED and medical practice patients between January 1 and March 20, 2020, the number of comments mentioning COVID-19 has grown at an average rate of 134% each week from early February through mid-March.To identify emerging themes and provide insights and recommendations to provider organizations, we isolated and analyzed the nearly 12,000 COVID-19-related comments, generating approximately 27,000 insights and leading to the following observations

Recommended by Sharon Wampler "How we see the world shapes who we choose to be - and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective. As someone with a chronic illness, I shouldn't have to advocate for myself when I'm at my most ill. Is it too much to expect doctors to believe the words that I have to force out, amidst spikes of pain, after I've dragged myself to the emergency room? Yet so often I've found that doctors only look at my patient history and actively ignore most of what I've said."

"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."

"The topic of placebo effects is distinguished by decades of keen scientific interest1-4 coupled with a general skepticism regarding the ultimate significance of these phenomena. The importance of psychologic factors in mediating these effects may contribute to the attitude that placebo effects are not as substantial as a therapeutic effect produced by a drug. Complementary and alternative therapies have sometimes been dismissed as "mere placebos." However, recent studies have provided compelling evidence that placebo effects are physiologically measurable with condition-specific pathways.5"

Dr. Jake Fleming recently suggested these potent keywords: quantifiable placebo The keywords led to this article. I find it affirming and empowering.

""Biogen should have had a plan in place from the very start about how it would handle expanded access requests that came in at all different points: before, during and after trial enrollment," Holly Fernandez-Lynch, an assistant professor of medical ethics at the Perelman School of Medicine at the University of Pennsylvania, explained."

"OpenNotes is the international movement that's making health care more transparent. It urges doctors, nurses, therapists, and others to invite patients to read the notes they write to describe a visit."

Recommended by DeAunne Denmark MD PhD: Virtual Conference - On Demand - June 16 - November 17, 2020 A wide range of topics will be covered, but all relate to how compassionate care can support goals like workforce well-being, patient experience, safety, quality and innovation, as well as additional content to support caregivers and leaders during this challenging time.

"While Alperin characterizes the shift in support among HCPs as gradual, he points to the arrival of the Apple Watch - the most recent model adds a feature that measures the saturation of oxygen in the user's blood - as "the biggest point of inflection." He notes that he has confirmed the accuracy of the watch's readings against EKGs performed in his office. And while that firsthand experience may be anecdotal, he believes it offers "one more piece of validation.""

"Rachelle Babler explores the untapped powers of combining music and advocacy to create human impact. She did this after losing her sister to colon cancer to create awareness around prevention and screening. The response was overwhelming. While many have advocated through speeches, fundraisers and media, very few advocate through songwriting and music. Maybe music will be the critical voice that creates the awakening to help us unite, during times of chaos and separation. When we are divided by speech, we can be united and reunited through the power of song. Rachelle Babler grew up in Southern California near the sunny beaches of San Diego and has always been an avid explorer, traveler, musician and creative soul. At the height of her career in forensics, she quit her job cold turkey to pursue her "why" and found out what that was during a global pandemic, "TO empower others to consciously advocate, SO THAT they can heal, inspire and unite the human collective". She is a #1 International Best Selling Co-Author, Speaker, Advocate. Singer/Songwriter and proud mother to her two amazing children, Austin and Camryn. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx"

DeAunne Denmark, MD, PhD - OUR CORE PREMISE: To improve health, we must close the gap between what we know and what we do. "INGH has a new facility and venture that is the best I've seen anywhere to get a whole slew of high-resolution data collected in one shot. And supposedly, it is "not that expensive"...