Group items tagged

"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."

"Types of errors can include: Some typographical spelling errors may or may not require correction. For example, if mesenteric is incorrectly spelled "mesentiric," you might not go through the trouble of having it corrected because there won't be any impact on your health or medical care. Errors in the spelling of your name do require correction because this can prevent your records from being shared properly among different providers, and it can affect payment for services. If your phone number or address is incorrect or outdated, you'll want to make sure it gets corrected immediately. Failure to do so will result in the wrong information being copied into future medical records or an inability for your medical team to contact you if needed. Any inaccurate information about your symptoms, diagnosis, or treatment should be corrected. For example, if your record says that you have temporal tumor instead of a testicular tumor, this is completely different and requires correction. If the record says your appointment was at 2 pm, but you never saw the doctor until 3:30 pm, that may not have any bearing on your future health or billing information needs, and it isn't worth correcting."

"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."

"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."

Recommended by Mike Kurisu, DO.

"Why leave all the details behind when you leave the doctor's office, or settle for a printed visit summary that only tells half the story? Abridge records your health care as it happened. You record your health story: - Conversations with doctors and nurses - Discussions about treatment options with family or friends who've been through it before - Personal observations about your symptoms and health "

Recommended by Tyler Orion: Conclusions and Relevance In this study, patients who read ambulatory notes online perceived mistakes, a substantial proportion of which they found to be serious. Older and sicker patients were twice as likely to report a serious error compared with younger and healthier patients, indicating important safety and quality implications. Sharing notes with patients may help engage them to improve record accuracy and health care safety together with practitioners. Meaning  As health information transparency increases, patients may perceive important errors in their visit notes, and inviting them to report mistakes that they believe are very serious may be associated with improved record accuracy and patient engagement in safety."

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.

Download the Mydatahelps app -- "When your heart beats faster than usual, it can mean that you're coming down with a cold, flu, coronavirus, or other viral infection. That's the conclusion of recent medical research. So wearable devices that measure your resting heart rate-made by Apple, Fitbit, Garmin, and others-might help scientists spot viral outbreaks, and also give you more insight into your own health. At Scripps Research, we've designed DETECT (Digital Engagement & Tracking for Early Control & Treatment), a study that will monitor your heart rate and allow you to record symptoms like fever or coughing."

Mike Kurisu: This is an online symposia from my alma mater medical school. I was one of original founders a long time ago. I am not speaking this year but know all the speakers. I have registered and will get access to recordings and have Dennis post them all for you to view at your leisure.

The program rule on Interoperability, Information Blocking, and ONC Health IT Certification, which implements the 21st Century Cures Act passed in 2016, requires patients be provided access to all the health information in their electronic medical records without charge by their healthcare provider beginning April 5, 2021

Advances in wearable device and home blood pressure monitoring technology offer promising opportunities to characterise population health and to improve understanding of cardiovascular disease risk. These devices also allow for remote longitudinal patient monitoring, increased engagement and health literacy, and delivery of personalised behavioural interventions all while reducing overall health-care costs.1 Various health systems and start-ups seek to combine these data with clinical information from the electronic medical record, and several insurance companies are already trying to incentivise the uptake of wearable devices.2

"The MIPACT study is a prospective cohort study designed to integrate multiple sources of digital data to better understand clinical phenotypes. Participants were recruited from Michigan Medicine and the surrounding communities and provided with an Apple Watch series 3 or 4 and an Omron Evolv Wireless Blood Pressure Monitor. Participants consented to provide access to parts of their electronic medical record and to provide a blood sample for laboratory and genetic analyses. Participants were asked to perform regular tasks including guided breathing, BP monitoring, and quarterly survey completion. The study was funded in part by Apple, Inc and performed in partnership with Michigan Medicine."

"What happens when people turn their everyday experience into data: an introduction to the essential ideas and key challenges of self-tracking. People keep track. In the eighteenth century, Benjamin Franklin kept charts of time spent and virtues lived up to. Today, people use technology to self-track: hours slept, steps taken, calories consumed, medications administered. Ninety million wearable sensors were shipped in 2014 to help us gather data about our lives. This book examines how people record, analyze, and reflect on this data, looking at the tools they use and the communities they become part of. Gina Neff and Dawn Nafus describe what happens when people turn their everyday experience-in particular, health and wellness-related experience-into data, and offer an introduction to the essential ideas and key challenges of using these technologies. They consider self-tracking as a social and cultural phenomenon, describing not only the use of data as a kind of mirror of the self but also how this enables people to connect to, and learn from, others. Neff and Nafus consider what's at stake: who wants our data and why; the practices of serious self-tracking enthusiasts; the design of commercial self-tracking technology; and how self-tracking can fill gaps in the healthcare system. Today, no one can lead an entirely untracked life. Neff and Nafus show us how to use data in a way that empowers and educates."

"Abstract Background: Wearables refer to devices that are worn by individuals. In the health care field, wearables may assist with individual monitoring and diagnosis. In fact, the potential for wearable technology to assist with health care has received recognition from health systems around the world, including a place in the strategic Long Term Plan shared by the National Health Service in England. However, wearables are not limited to specialist medical devices used by patients. Leading technology companies, including Apple, have been exploring the capabilities of wearable health technology for health-conscious consumers. Despite advancements in wearable health technology, research is yet to be conducted on wearables and empowerment. Objective: This study aimed to identify, summarize, and synthesize knowledge on how wearable health technology can empower individuals to take greater responsibility for their health and care. Methods: This study was a scoping review with thematic analysis and narrative synthesis. Relevant guidance, such as the Arksey and O'Malley framework, was followed. In addition to searching gray literature, we searched MEDLINE, EMBASE, PsycINFO, HMIC, and Cochrane Library. Studies were included based on the following selection criteria: publication in English, publication in Europe or the United States, focus on wearables, relevance to the research, and the availability of the full text. Results: After identifying 1585 unique records and excluding papers based on the selection criteria, 20 studies were included in the review. On analysis of these 20 studies, 3 main themes emerged: the potential barriers to using wearables, the role of providers and the benefits to providers from promoting the use of wearables, and how wearables can drive behavior change. Conclusions: Considerable literature findings suggest that wearables can empower individuals by assisting with diagnosis, behavior change, and self-monitoring. However, greater adoption

"As a repository of sensitive patient information, the company's databases churn silently behind the scenes of their medical care, scooping up their most guarded secrets: the diseases they have, the drugs they're taking, the places their bodies are broken that they haven't told anyone but their doctor. The family of databases that make up MarketScan now include the records of a stunning 270 million Americans, or 82% of the population. The vast reach of MarketScan, and its immense value, is unmistakable. Last month, a private equity firm announced that it would pay $1 billion to buy the databases from IBM. It was by far the most valuable asset left for IBM as the technology behemoth cast off its foundering Watson Health business."

""Patients shouldn't be bystanders in drug development." - Onno Faber (Founder of RDMD) Four years ago, I started experiencing hearing loss in my left ear. Doctors prescribed me steroids, thinking it was an infection, but the deterioration did not slow down. After numerous failed treatments, a specialist finally ordered an MRI, whereupon he discovered a large tumor on my left hearing nerve. Months later, another tumor was discovered in my right hearing nerve, and another on my spine. I was diagnosed with a rare genetic disease called NF2 (Neurofibromatosis Type 2), a disease that affects only 1 in 30,000 people. It completely changed my perspective. All my life, I've been a technology entrepreneur, beginning with a tech company I started in high school. I'm now applying everything I've learned throughout my career to build RDMD, where we're helping to accelerate treatments for patients with rare disease. Our mission is ambitious, but I can't imagine working on anything more important than this. - Onno"