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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

Health Literacy - CCMI - 0 views

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    "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."
Dennis OConnor

JMIR mHealth and uHealth - Wearing the Future-Wearables to Empower Users to Take Greate... - 0 views

  • Considerable literature findings suggest that wearables can empower individuals by assisting with diagnosis, behavior change, and self-monitoring.
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    "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
Dennis OConnor

Empowered Patient Podcast: When the Patient is a Medical Mystery with Cathy Miller - 0 views

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    "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."
Dennis OConnor

LymeDisease.org - Advocating nationally for quality accessible healthcare for patients ... - 0 views

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    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.
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

Patient Journey App: improve healthcare & patient engagement | Patient Journey App - 0 views

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    "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."
Dennis OConnor

MIT SF Grand Hack 2019 - MIT Hacking Medicine - 0 views

  • Interested in disrupting healthcare? Join MIT Hacking Medicine as we bring the MIT Grand Hack to San Francisco! This is the weekend to brainstorm and build innovative solutions with hundreds of like-minded engineers, clinicians, designers, developers and business people. Within our multi-theme event, there is sure to be a healthcare challenge for everyone! Interested in helping out? You can partner with us, become a sponsor, or sign up to be a mentor! Email sfgrandhack@mit.edu for more information!Twitter Hashtag: #SFGrandHack2019 Frequently Asked Questions (FAQs)
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    "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."
Dennis OConnor

EMPOWEREDPATIENTPODCAST.COM - 0 views

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    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.
Dennis OConnor

End of Life Liberty: Empowering Dying Patients with Choices. - 0 views

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    "Biomedical Ethics Seminar Series: Special Event  End of Life Liberty: Empowering Dying Patients with Choices. An overview of the evolving changes in law and medicine governing patient autonomy at the end of life over the past 2 decades. What has been learned? What changes ought be considered? Can we move to normalize the practice of aid in dying within the practice of medicine? Do some states offer a model for practice governed by standard of care? Do psychedelic medicines offer a new palliative tool for patients with anxiety? What is the status of the research, and federal, state and local law governing psychedelic substances.
Dennis OConnor

Mount Sinai Lab 100; reimagining how healthcare is delivered - 0 views

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    Lab100 gives patients a comprehensive health risk assessment and biometric screening. The goal is to empower patients to track their health over time and to learn how their behavior and lifestyle are impacting their health in a very tangible way.
Dennis OConnor

Transforming Health Care Measurement By Partnering With Patients And Caregivers | Healt... - 0 views

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    "In a high-performing health care system, measurement drives progress toward safe, effective, efficient, timely, equitable, and patient-centered care. Measurement helps to identify priority areas for improvement, evaluate which changes make a difference in performance, and promote accountability. Measurement informs how health care is paid for, how resources are allocated, and, increasingly, how patients and their care teams make care decisions. "
Dennis OConnor

EpigeneticsRX - 0 views

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    "Precise. Personalized. Prevention. Express your best DNA - the power to impact genetic expression is in your hands. Epigenetics is the study of how lifestyle & environment influence the expression of your genes." OUR MISSION is to empower and inspire providers and patients in optimizing genetic potential through precise, personalized protocols that positively impact patients' health and future generations.
Dennis OConnor

The Power of Advocating Through Music | Rachelle Babler | TEDxWestMonroe - 0 views

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    "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"
Dennis OConnor

The Quantification of Placebo Effects Within a General Model of Health Care Outcomes - 1 views

  • It is proposed that the integration of a scientific model of placebo effects within a general model of health care outcomes could finally end the placebo debate and help to integrate these powerful effects into the health care system.
  • Positive expectancy is recognized as a central component of placebo phenomena by all placebo theorists
  • The proposed model emphasizes that the search for a placebo personality factor must be combined with the measurement of situational expectancy.
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  • an individual who has negative expectations regarding treatment effectiveness would likely produce a stronger than average “nocebo” effec
  • placebo-prone personality
  • Absorption
  • receptivity to sensory experiences and a propensity for sustained, focused attention.
  • Absorption has a genetic basis and is higher in women compared to men
  • Absorption can go in either a positive or negative direction, depending on the situation,
  • Subjects were randomly
  • outcome measures
  • based on three scales
  • includes scales measuring fatigue, pain, and spasticity
  • Judgment that the placebo was the active device resulted in a positive score with a magnitude of the confidence rating.
  • if judgment was that the placebo was the placebo device, the confidence rating of the placebo was a negative score, with the magnitude of the rating.
  • scored in the upper quintile on improved quality of life, as measured by the 3 QLI (an average of three symptom scales measuring pain, fatigue, and spasticity) after receiving treatment with a sham device.
  • placebo responders
  • Placebo responders scored higher on Absorptio
  • Placebo responders gave higher confidence ratings that the placebo was the active device
  • This study provides support for a two-factor model of placebo responding.
  • importance of positive expectancy
  • both cognitive and emotional factors mediate these effects
  • Positive beliefs or confidence in the treatment coupled with a desire to feel better activate processes that result in positive outcomes.
  • positive expectancy is an essential factor
  • disease-specific pathways that are activated by positive expectancies have helped to transform this “soft” psychologic factor into a “hard” physiologic factor with physically measurable effects.
  • While the shift from negative to positive affect may be the hallmark of placebo responding, negative affect alone is not sufficient and can play a role in people who worsen as well (nocebo effects).
  • Numerous research studies have reliably shown that Absorption is modestly (yet very consistently) correlated with hypnotizability.
  • Hypnotizability is often associated with “suggestibility,” with perhaps the sense of a weak-willed character or unbridled fantasy-proneness, the “unreality factor” that has plagued placebo theory for decades.
  • enlightening to view these individual differences as a natural endowment in self-regulation skills: a potential innate strength rather than a simple weakness with a natural ability for self-directed healing in response to health challenges.
  • Decades of research have reliably demonstrated that individuals scoring high in Absorption can skillfully modulate an impressive array of physiologic processes in laboratory settings.
  • The literature suggests that the mind–body control of high Absorption scorers is similar to the self-regulation skills that many are seeking to develop with meditation, mindfulness, yoga, and qigong.
  • The regular practice of mind–body control and the cultivation of positive attitudes may enhance regulation at higher levels, improving the regularity of circadian and other rhythms,
  • points to the role of both expectation and conditioning, with conditioning playing a greater role in certain pathways such as immune modulation.
  • somatic vulnerability of high Absorption individuals who suffer from negative biases in perception.
  • nocebo phenomena described by these researchers are important for our model as they directly illustrate the power of a negative interaction of the two factors.
  • Many physicians admit to prescribing placebos to contribute to patient wellness, even though this “dark secret” is not condoned and is considered to be ethically questionable.
  • High Absorption individuals may benefit from encouragement to utilize their innate self-regulation skills toward maximum therapeutic effect.
  • ersons with average Absorption scores can be encouraged to become more skilled at self-regulation through mind–body therapies
  • The model does not specifically address the many factors that contribute to confidence in the treatment, such as cost, pill color, pill size, or confidence-enhancing paraphernalia.
  • The role of provider and patient interaction are also not specifically addressed.
  • he model also does not directly address the role of stress reduction
  • The strength of placebo responding in domains such as pain and depression clearly indicate the importance of the shift from a negative to a positive state.
  • the unresolved issue of why some people respond to placebos whereas others do not
  • asic two-factor model can be further tested with the basic measurement tools of expectancy and Absorption,
  • Conclusions
  • the recognition that positive expectancy and expert self-regulation skills significantly contribute to health outcomes can help to integrate these powerful effects into the health care system
  • The “positive psychology” movement is shifting attention to the power of positive expectation
  • undermining nature of negative expectancy and pessimistic language, especially in vulnerable populations such as those with pain and depression
  • Practitioners of the art of health care have always recognized the importance of motivated and empowered patients and the power of a kind word and a ray of hope.
  • This is the time to quantify these factors, integrating art and science, and finally solving (and forgiving Descartes for) the mind–body problem.
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    "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"
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    Dr. Jake Fleming recently suggested these potent keywords: quantifiable placebo The keywords led to this article. I find it affirming and empowering.
Dennis OConnor

UCSF Emergency COVID-19 Early Detection Research SUPPORT REQUEST - 1 views

shared by Dennis OConnor on 24 Mar 20 - No Cached
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    Click to download the PDF. Oura's primary goal is to help UCSF engage and increase the number of users who have rings and are opting in to early detection efforts. Oura is offering rings at $250 for orders of 1000 rings supporting TemPredict. Immediate impact: Participants are presented every morning with daily personalized insights on heart rate, HRv, respiration, temperature, sleep staging, and activity to empower them to monitor their own health and change their behavior accordingly. This is especially important in medical personnel and high-risk patients. Future impact: UCSF will leverage Oura's backend data to build models that can aid in identifying symptom profiles, pinpointing at risk populations, predicting severity, and validating recovery, containment, and treatment efforts. The data gathered now may be our only chance to measure these changes so we can recognize them and deploy predictive algorithms to minimize the next wave of this outbreak, expected in Fall 2020. We ask all donors to go to OuraRing.com and buy rings for medical personnel so they can join this effort.
Dennis OConnor

Please support Project Apollo Team as they "Ride Out Lyme to raise funds for Lyme research - 0 views

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    A message from Sharon: Please support Project Apollo Team as they "Ride Out Lyme to raise funds for Lyme research & to support patients! The 2nd annual event, we raised $10,000 last year. The money is split between BAL to support research and ROL for grants to patients over the age of 26 with financial need. We hope to earmark money raised by ROL La Jolla for San Diego patients in 2021, but this year the money is open to anyone in the US. The mission of Bay Area Lyme "to make Lyme disease easy to diagnose and simple to cure" and we plan to submit a "Measured Lyme" research proposal from Project Apollo in the coming year. Sharon, Mike and Meg will ride as part of the Project Apollo team. Others are welcome! We would love your support as a rider or with donations! To donate to Team Project Apollo visit https://rideoutlyme.salsalabs.org/lajolla2020/t/projectapollo/index.html Let's empower people to realize optimal health!
Dennis OConnor

Mt. Sinai Lab100 - 0 views

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    Part clinic, part research lab, Lab100 uses precision diagnostics to empower patients and help scientists advance our understanding of human health.
Dennis OConnor

Empowered Patient Podcast: Overcoming Fear of Aging with Heidi Rataj Documentary Produc... - 1 views

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    "Heidi Rataj is an award-winning documentary producer and director and a caregiver for her mom.  Heidi talks about her own fear of aging and the search for a new narrative for seniors as they age.  While we need to be respectful of all journeys, activating seniors to allow them to accomplish goals is key to a healthier individual and society.  She also points out how digital technology plays a role in coordinating care and enabling people to age in place. @UCSDHealthyAging"
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