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Dennis OConnor

11 HIPAA and Medical Records Privacy Myths for Patients - 0 views

  • 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.
  • Myth: HIPAA Prevents Sharing of Information With Family Members
  • Myth: Only Patients or Caregivers May Get Copies of Health Records
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  • Myth: Employers Are Payers and Can Gain Access to an Employee's Records
  • Myth: HIPAA Laws Prevent Doctors From Exchanging Email With Their Patients
  • Myth: Providers Are Required by Law to Provide All Medical Records to You
  • Myth: Patients Denied Access to Their Records May Sue to Get Copies
  • Myth: HIPAA Laws Cover Privacy and Security for All Medical Records
  • Myth: Providers Are Required to Correct Any Errors Found in Patient Records
  • Myth: Your Health and Medical Records Cannot Affect Your Credit Records
  • Myth: Medical Information Cannot Be Legally Sold or Used for Marketing
  • Myth: HIPAA Can Be Used as an Excuse
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    "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."
Dennis OConnor

How to Correct Mistakes in Your Medical Records - 0 views

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    "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 If your phone number or address is incorrect or outdated, you'll want to make sure it gets corrected immediately.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."
Dennis OConnor

Abridge | AppKaiju - 0 views

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    "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 "
Dennis OConnor

Picnic AI - 1 views

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    "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."
Dennis OConnor

Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory C... - 0 views

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    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."
Dennis OConnor

DrugViu | Advancing Autoimmune Diseases Research - 0 views

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    "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."
Dennis OConnor

A mysterious company's coronavirus papers in top medical journals may be unraveling | S... - 0 views

  • On its face, it was a major finding: Antimalarial drugs touted by the White House as possible COVID-19 treatments looked to be not just ineffective, but downright deadly. A study published on 22 May in The Lancet used hospital records procured by a little-known data analytics company called Surgisphere to conclude that coronavirus patients taking chloroquine or hydroxychloroquine were more likely to show an irregular heart rhythm—a known side effect thought to be rare—and were more likely to die in the hospital. Within days, some large randomized trials of the drugs—the type that might prove or disprove the retrospective study’s analysis—screeched to a halt. Solidarity, the World Health Organization’s (WHO’s) megatrial of potential COVID-19 treatments, paused recruitment into its hydroxychloroquine arm, for example.
  • The study doesn’t properly control for the likelihood that patients getting the experimental drugs were sicker than the controls
  • Other researchers were befuddled by the data themselves. Though 66% of the patients were reportedly treated in North America, the reported doses tended to be higher than the guidelines set by the U.S. Food and Drug Administration, White notes. The authors claim to have included 4402 patients in Africa, 561 of whom died, but it seems unlikely that African hospitals would have detailed electronic health records for so many patients, White says.
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  • This was very, very annoying, that The Lancet were just going to let them write this absurd reply … without addressing any of the other concerns,”
  • 200 clinicians and researchers, that calls for the release of Surgisphere’s hospital-level data, an independent validation of the results
  • But the revision had other problems, Chaccour and his colleagues wrote in their blog post. For example, the mortality rate for patients who received mechanical ventilation but no ivermectin was just 21%, which is strikingly low; a recent case series from New York City area found that 88% of COVID-19 patients who needed ventilation died. Also, the data shown in a figure were wildly different from those reported in the text. (Science also attempted to reach Grainger, but received no reply to an email and call.)
  • Surgisphere’s sparse online presence—the website doesn’t list any of its partner hospitals by name or identify its scientific advisory board, for example—have prompted intense skepticism.
  • wondered in a blog post why Surgisphere’s enormous database doesn’t appear to have been used in peer-reviewed research studies until May.
  • how LinkedIn could list only five Surgisphere employees—all but Desai apparently lacking a scientific or medical background—if the company really provides software to hundreds of hospitals to coordinate the collection of sensitive data from electronic health records.
  • Desai’s spokesperson responded to inquiries about the company by saying it has 11 employees and has been developing its database since 2008.
  • The potential of hydroxychloroquine for treating COVID-19 has become a political flashpoint, and the questions around the Lancet paper have provided new fodder to the drug’s supporters. French microbiologist Didier Raoult, whose own widely criticized studies suggested a benefit from the drug, derided the new study in a video posted today, calling the authors “incompetent.” On social media, some speculated that the paper was part of a conspiracy against hydroxychloroquine.
  • Chaccour says both NEJM and The Lancet should have scrutinized the provenance of Surgisphere’s data more closely before publishing the studies. “Here we are in the middle of a pandemic with hundreds of thousands of deaths, and the two most prestigious medical journals have failed us,” he says.
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    Recommended by Mike Kurisu, DO.
Dennis OConnor

[Delta-9-tetrahydrocannabinol-cannabidiol in the treatment of - 0 views

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    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.
Dennis OConnor

Detect - App Scripps Research - 0 views

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    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."
Dennis OConnor

Milasen: The drug that went from idea to injection in 10 months - 0 views

  • itting in freezer at Boston Children’s Hospital is a drug you won’t find anywhere else. It’s called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That’s because milasen was designed to treat a single patient—a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children’s Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It’s a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug.
  • While the story of milasen could be seen as a template for other highly personalized drugs—what the field has come to call n-of-1 therapies—it also raises questions: Who should get these treatments? How will they be funded? And how will the US Food and Drug Administration regulate these projects?
  • Yu was intrigued. He reached out and offered to do whole-genome sequencing on Mila, her parents, and her younger brother.
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  • Mila’s mom, Julia Vitarello, had started a group called Mila’s Miracle Foundation to raise money to develop a gene therapy for her daughter.
  • Julia Vitarello, Mila's mother In March, Yu’s team found that a piece of DNA called a retrotransposon—the genetic remnants of viruses scattered throughout all of our genomes—had spontaneously inserted itself in the middle of a noncoding region of Mila’s CLN7 gene.
  • Black told Yu to renegotiate with the FDA. The 3-month safety study in rats, followed by another couple months to report the data, would take too long. After a letter from Vitarello outlining Mila’s decline, the FDA made a concession: Mila could get the drug after just 1 month of testing, so long as the rat studies continued to 3 months to understand any long-term toxicity.
  • Today, Mila continues to get injections of her drug approximately every 2 months. She used to have up to 30 seizures a day, each lasting more than a minute. Now, she only has a few a day, and they don’t last long,
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    "Sitting in freezer at Boston Children's Hospital is a drug you won't find anywhere else. It's called milasen, and the 18 g that the hospital custom-ordered nearly 2 years ago should last for decades. That's because milasen was designed to treat a single patient-a now 8-year-old girl named Mila Makovec. Milasen was built on decades of work on a class of drugs called antisense oligonucleotides. But after Boston Children's Hospital scientist Timothy Yu diagnosed Mila with a never-before-seen genetic mutation, he took only 10 months to go from idea to injection. It's a record-shattering sprint in the typical drug-development marathon, and an unprecedented degree of personalization for a chemical drug."
Dennis OConnor

Qualifying and quantifying the precision medicine rhetoric - 0 views

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    Background With the rise of precision medicine efforts worldwide, our study objective was to describe and map the emerging precision medicine landscape. A Google search was conducted between June 19, 2017 to July 20, 2017 to examine how "precision medicine" and its analogous terminology were used to describe precision medicine efforts. Resulting web-pages were reviewed for geographic location, data type(s), program aim(s), sample size, duration, and the key search terms used and recorded in a database. Descriptive statistics were applied to quantify terminology used to describe specific precision medicine efforts. Qualitative data were analyzed for content and patterns.
Dennis OConnor

Free Live Practice Sessions - UCSD Center for Mindfulness - 0 views

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    "Due to the current situation with the coronavirus (COVID-19) evolving rapidly across the United States, our Center, The Sanford Institute, and the Compassion Institute  will work together to provide daily streams and recordings of mindfulness and compassion sessions to provide resources and online support to those affected."
Dennis OConnor

JMU - Associations Between Heart Rate Variability Measured With a Wrist-Worn Sensor and... - 0 views

  • Associations Between Heart Rate Variability Measured With a Wrist-Worn Sensor and Older Adults’ Physical Function: Observational Study
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    "ABSTRACT Background: Heart rate variability (HRV), or variation in beat-to-beat intervals of the heart, is a quantitative measure of autonomic regulation of the cardiovascular system. Low HRV derived from electrocardiogram (ECG) recordings is reported to be related to physical frailty in older adults. Recent advances in wearable technology offer opportunities to more easily integrate monitoring of HRV into regular clinical geriatric health assessments. However, signals obtained from ECG versus wearable photoplethysmography (PPG) devices are different, and a critical first step preceding their widespread use is to determine whether HRV metrics derived from PPG devices also relate to older adults' physical function."
Dennis OConnor

(4) Can Precision Health Transform Primary Care? Look to Stanford's Humanwide Pilot. | ... - 0 views

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    "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."
Dennis OConnor

Conference Schedule | Integrative Medicine Symposium | Touro University Ca - 0 views

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    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.
Dennis OConnor

Empowering patients and reducing inequities: is there potential in sharing clinical not... - 0 views

  • engages them actively in their care, improves their sense of control over their health and enhances safety.
  • older, less educated, non-white or whose first language is not English report even greater benefits than do their counterparts
  • we suggest that open notes may, over time, prove important in the care of patients who are at risk of experiencing healthcare disparities.
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  • in the USA, the likelihood of receiving an access code to activate health portals is significantly lower for minorities, the uninsured, non-English speakers and older patients.11
  • Research suggests that negative implicit biases can affect the quality of health interactions and are associated with fewer signals of support and empathy towards patients representing some disadvantaged demographic groups, including racial and ethnic minorities, low-income, less educated and older patients.1
  • Open notes might be viewed as extending the visit, potentially thereby elongating and strengthening patient–physician interactions before and after the pressures of the clinical encounter.
  • investigators found that patients who were non-white or less educated reported more benefits than their counterparts:
  • Although some health organisations provide portals in a range of languages, clinical notes are typically offered in one language only.
  • access to open notes appears to help some patients who speak another primary language by allowing them, or a care partner, to read and recall information.
  • 77% (357/462) reported reading their notes as extremely important for remembering their care plan,
  • It is estimated that, on average, patients do not recall about half of the health information communicated during visits, with this figure likely higher among those with lower levels of health literacy.2
  • health literacy is now recognised as a driver of health disparities.
  • By offering patients access to records that document what was discussed during visits, open notes may provide a novel forum for augmenting health literacy among some patients.
  • As one patient noted: “I like my summaries because I can go back and revisit them”.1
  • in a large study of patients who read notes, 38% (8588/22 753) reported sharing them with others, predominantly family members
  • Limitations
  • Open notes are becoming increasingly common, and preliminary data suggest they may hold particular benefits for vulnerable patient populations
  • Second, as preliminary evidence suggests, it is possible that open notes may increase trust between patients and clinicians, reduce transmission of bias and increase patient engagement, especially among vulnerable patient populations
  • co-creation of medical notes holds promise and is currently under investigation
Dennis OConnor

Federal Rules mandating open notes - 0 views

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    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
Dennis OConnor

Commentaray: Another step (count) towards leveraging mobile health data for clinical pr... - 0 views

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    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
Dennis OConnor

MIPACT Research Tools - 0 views

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    "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."
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