| 11. |
- Blease, Charlotte, et al.
(författare)
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Patients, clinicians and open notes : information blocking as a case of epistemic injustice
- 2022
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Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 48:10, s. 785-793
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Tidskriftsartikel (refereegranskat)abstract
- In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.
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| 12. |
- Blease, Charlotte, et al.
(författare)
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Preparing Patients and Clinicians for Open Notes in Mental Health : Qualitative Inquiry of International Experts
- 2021
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Ingår i: JMIR Mental Health. - : JMIR Publications. - 2368-7959. ; 8:4
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients.OBJECTIVE: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care.METHODS: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations.RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes.CONCLUSIONS: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.
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| 13. |
- Blease, Charlotte R, et al.
(författare)
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Sharing clinical notes, and placebo and nocebo effects : Can documentation affect patient health?
- 2022
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Ingår i: Journal of Health Psychology. - : Sage Publications. - 1359-1053 .- 1461-7277. ; 27:1, s. 135-146
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Tidskriftsartikel (refereegranskat)abstract
- This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes.
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| 14. |
- Blease, Charlotte, et al.
(författare)
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The benefits and harms of open notes in mental health : A Delphi survey of international experts
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 16:10
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Tidskriftsartikel (refereegranskat)abstract
- IMPORTANCE: As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records.OBJECTIVE: To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes.DESIGN: An online 3-round Delphi poll.SETTING: Online.PARTICIPANTS: International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes.MAIN OUTCOMES, AND MEASURES: An expert-generated consensus on the benefits and risks of sharing mental health notes with patients.RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients' understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation.CONCLUSIONS AND RELEVANCE: This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.
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| 15. |
- Blease, Charlotte, et al.
(författare)
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US primary care in 2029 : A Delphi survey on the impact of machine learning
- 2020
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:10
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To solicit leading health informaticians' predictions about the impact of AI/ML on primary care in the US in 2029.Design: A three-round online modified Delphi poll.Participants: Twenty-nine leading health informaticians.Methods: In September 2019, health informatics experts were selected by the research team, and invited to participate the Delphi poll. Participation in each round was anonymous, and panelists were given between 4-8 weeks to respond to each round. In Round 1 open-ended questions solicited forecasts on the impact of AI/ML on: (1) patient care, (2) access to care, (3) the primary care workforce, (4) technological breakthroughs, and (5) the long-future for primary care physicians. Responses were coded to produce itemized statements. In Round 2, participants were invited to rate their agreement with each item along 7-point Likert scales. Responses were analyzed for consensus which was set at a predetermined interquartile range of ≤ 1. In Round 3 items that did not reach consensus were redistributed.Results: A total of 16 experts participated in Round 1 (16/29, 55%). Of these experts 13/16 (response rate, 81%), and 13/13 (response rate, 100%), responded to Rounds 2 and 3, respectively. As a result of developments in AI/ML by 2029 experts anticipated workplace changes including incursions into the disintermediation of physician expertise, and increased AI/ML training requirements for medical students. Informaticians also forecast that by 2029 AI/ML will increase diagnostic accuracy especially among those with limited access to experts, minorities and those with rare diseases. Expert panelists also predicted that AI/ML-tools would improve access to expert doctor knowledge.Cconclusions: This study presents timely information on informaticians' consensus views about the impact of AI/ML on US primary care in 2029. Preparation for the near-future of primary care will require improved levels of digital health literacy among patients and physicians.
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| 16. |
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| 17. |
- Desroches, C, et al.
(författare)
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Synthesis, characterization and optical power limiting behaviour of phenylazo- and 4-nitrophenylazo-tetrahydroxytetrathiacalix[4]arene
- 2001
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Ingår i: Journal of Materials Chemistry. - 0959-9428 .- 1364-5501. ; 11:12, s. 3014-3017
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Tidskriftsartikel (refereegranskat)abstract
- p-Tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[4] arene and p-tetrakis(phenylazo) tetrahydroxytetrathiacalix[4] arene were prepared and fully characterized using H-1 and C-13 NMR, mass spectroscopy, thermogravimetric analysis and differential scanning calorimetry. The solid-state structure of p-tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[4] arene was investigated by single crystal X-ray diffraction. It crystallized in the triclinic system (space group: P (1) over bar). z-Scan experiments were performed on the p-tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[ 4] arene showing non linear absorption due to two photon absorption with a TPA cross-section of about 50 x 10(-50) cm(4) s per photon. Optical power limiting measurements on the p-tetrakis( phenylazo) tetrahydroxytetrathiacalix[ 4] arene at 532 nm (48% linear transmission) was found to limit the energy to similar to9 muJ.
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| 18. |
- Salmi, Liz, et al.
(författare)
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US policy requires immediate release of records to patients
- 2021
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Ingår i: The BMJ. - : BMJ Publishing Group Ltd. - 1756-1833. ; 372
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Tidskriftsartikel (refereegranskat)abstract
- Patients and clinicians should embrace the opportunitiesOn 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.1 This new information sharing rule from the 21st Century Cures Act of 20162 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request.The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018.3 Estonian citizens have had full access since 2005.4 The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes,5 and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.6To patient groups, however, it is the culmination of 25 years of advocacy and relationship building with clinicians, researchers, and policy …
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