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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

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

Open Notes: Feel More in Control - 1 views

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    "Feel More in Control OpenNotes isn't a product. It's a movement that makes health care more open and transparent by encouraging doctors and other professionals to share their visit notes. Reading your notes can help you manage your health care. Ask your doctor for them!"
Dennis OConnor

OpenNotes - Patients and clinicians on the same page - 1 views

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    "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."
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

Frontiers | Using Self-Study and Peer-to-Peer Support to Change "Sick" Care to "Health"... - 1 views

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    "Camille Nebeker, Bethany Weisberg, Eric Hekler, and Michael Kurisu Frontiers in Digital Health - This paper is also posted on our PHE Website
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

COVID-19 Racial Health Disparities Stress Patient Trust Pitfalls - 0 views

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    Recommended by DeAunne Denmark MD Phd. "New data showed black patients have less trust in COVID-19 mitigation, underscoring decades of racial health disparities and limited patient trust."
Dennis OConnor

The epic battle against coronavirus misinformation and conspiracy theories - 0 views

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    Recommended by Tyler Orion: "For researchers who track how information spreads, COVID-19 is an experimental subject like no other. "This is an opportunity to see how the whole world pays attention to a topic," says Renée diResta at the Stanford Internet Observatory in California. She and many others have been scrambling to track and analyse the disparate falsehoods floating around - both 'misinformation', which is wrong but not deliberately misleading, and 'disinformation', which refers to organized falsehoods that are intended to deceive. "
Dennis OConnor

Vicky A. Newman Memorial (Full) March 15, 2020 - YouTube - 0 views

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    "Vicky Newman's memorial was held in the midst of the coronavirus epidemic on 03-15-1986"
Dennis OConnor

The CDC and States Are Misreporting COVID-19 Test Data - The Atlantic - 0 views

  • A negative test result means something different for each test. If somebody tests negative on a viral test, a doctor can be relatively confident that they are not sick right now; if somebody tests negative on an antibody test, they have probably never been infected with or exposed to the coronavirus. (Or they may have been given a false result—antibody tests are notoriously less accurate on an individual level than viral tests.) The problem is that the CDC is clumping negative results from both tests together in its public reporting.
  • Mixing the two tests makes it much harder to understand the meaning of positive tests, and it clouds important information about the U.S. response to the pandemic, Jha said. “The viral testing is to understand how many people are getting infected, while antibody testing is like looking in the rearview mirror. The two tests are totally different signals,” he told us. By combining the two types of results, the CDC has made them both “uninterpretable,” he said.
  • “Combining a test that is designed to detect current infection with a test that detects infection at some point in the past is just really confusing and muddies the water,” Hanage told us.
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    "The government's disease-fighting agency is conflating viral and antibody tests, compromising a few crucial metrics that governors depend on to reopen their economies. Pennsylvania, Georgia, Texas, and other states are doing the same."
Dennis OConnor

Coronavirus Hub: Cell Press - 0 views

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    Recommended by DeAunne Denmark MD Phd, "At Cell Press, we recognize the urgent need to quickly share information about SARS-CoV-2, the coronavirus that causes COVID-19. On this hub page, curated by members of our editorial team, you'll find the latest content about the outbreak as it appears in Cell Press journals."
Dennis OConnor

Mimi Guarneri MD on Covid-19 and Vitamins D and C, Antibody Testing, potential spike on... - 0 views

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    Published May 20, 2020 - Perspective and advice from Mimi Guarneri. Vitamin C and D, right foods, good sleep, time in the sun, all help strengthen the soil. Her explanation of the "Pearl" metaphor resonates.
Dennis OConnor

The Rogue Experimenters | The New Yorker - 0 views

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    Recommended by Megan Sweeney I listened to the article. It gave me a sense of context for self-study. I also found a strong path of hope that this kind of science will grow during the disruption caused by Covid-19
Dennis OConnor

GA4GH (Global Alliance for Genomics & Health) Community Response to COVID-19 - 0 views

  • A Message from the GA4GH Executive Committee Ewan Birney, Heidi Rehm, Peter Goodhand, and Kathryn North The urgency of scientific data sharing is never more apparent than during a global disease outbreak. Rapid sharing of high quality data is critical for the effective and timely response to any pandemic. GA4GH has joined Wellcome and others to call for rapid, open sharing of research findings and data relevant to COVID-19. The GA4GH community is responding through the development of a variety of research and data sharing platforms and initiatives…. But in order to ensure truly equitable access to and participation in both the scientific process and its benefits, we must rigorously maintain technical and ethical standards that support the open sharing of data and knowledge—now and always.
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    Recommended by DeAunne Denmark, MD. Phd.
Dennis OConnor

about - COVID HUMAN GENETIC EFFORT - 0 views

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    Recommended by DeAunne Denmark, MD. Phd. : Summary of Our Work For many years, up to 25 years for some, members of the COVID Human Genetic Effort have studied the human genetic basis of life-threatening diseases striking previously healthy human beings in the course of primary infection by a variety of viruses, bacteria, fungi, or parasites. In particular, we and others have identified monogenic inborn errors of immunity (IEI) that selectively underlie life-threatening or lethal viral diseases in previously healthy children or adults, including various severe diseases caused by Epstein-Barr virus, herpes simplex virus encephalitis, varicella zoster virus encephalitis, fulminant hepatitis due to hepatitis A virus, lethal primary infection by cytomegalovirus, severe pneumonitis due to influenza virus or rhinovirus, beta-papillomavirus-driven skin cancer, human herpes virus 8-driven Kaposi sarcoma, and others (see references below).
Dennis OConnor

Recommended Twitter Feeds for Expert Advice on Science and Medicine - 1 views

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    Recommended by DeAunne Denmark, MD, PhD & Meg Sweeney
Dennis OConnor

A global effort to define the human genetics of protective immunity to SARS-CoV-2 infec... - 0 views

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    Recommended by Meg Sweeney: "Abstract SARS-CoV-2 infection displays immense inter-individual clinical variability, ranging from silent infection to lethal disease. The role of human genetics in determining clinical response to the virus remains unclear. Studies of outliers - individuals remaining uninfected despite viral exposure and healthy young patients with life-threatening disease - presents a unique opportunity to reveal human genetic determinants of infection and disease."
Dennis OConnor

How COVID-19 Is Shaping the Patient Experience (PDF) - 0 views

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    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
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