112 results on '"DesRoches CM"'
Search Results
2. The public and the smallpox threat.
- Author
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Blendon RJ, DesRoches CM, Benson JM, Herrmann MJ, Taylor-Clark K, and Weldon KJ
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- 2003
3. Patient safety: views of practicing physicians and the public on medical errors.
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Blendon RJ, DesRoches CM, Brodie M, Benson JM, Rosen AB, Schneider E, Altman DE, Zapert K, Herrmann MJ, and Steffenson AE
- Published
- 2002
4. Confronting competing demands to improve quality: a five-country hospital survey: amid common concerns about quality, hospital leaders endorse investing in information technology.
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Blendon RJ, Schoen C, DesRoches CM, Osborn R, Zapert K, and Raleigh E
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This paper reports on a 2003 comparative survey of hospital executives in Australia, Canada, New Zealand, the United Kingdom, and the United States. Reflecting higher spending levels, U.S. hospitals as a group stand out for generally more positive ratings of facilities and finances and short or no waiting times. Yet U.S. hospital executives are also the most negative about their country's health care system. Hospital executives in all five countries expressed concerns about staffing shortages and emergency department waiting times and quality. Asked about future strategies to improve quality, executives in all five countries expressed support for making information technology an investment priority. [ABSTRACT FROM AUTHOR]
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- 2004
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5. The uninsured, the working uninsured, and the public: many Americans appear to be unaware of just how many workers still lack insurance coverage.
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Blendon RJ, Young JT, and DesRoches CM
- Abstract
Recent opinion surveys show a high level of public support for the current employer-based health insurance system. Many Americans are not aware that this system is endangered or that the number of uninsured persons is growing. The public appears to favor a two-track system for the working uninsured--strengthening the existing employer-based system and developing a parallel system for those without employer coverage. [ABSTRACT FROM AUTHOR]
- Published
- 1999
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6. Physicians' views on quality of care: a five-country comparison: all agree that quality of care is deteriorating, but U.S. physicians face some unique problems as well.
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Blendon RJ, Schoen C, Donelan K, Osborn R, DesRoches CM, Scoles K, Davis K, Binns K, and Zapert K
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Quality of care in the United States and elsewhere consistently fails to meet established standards. These failures subject patients to premature death and needless suffering. Yet, unlike the experience with other threats to life (tire failures or airplane rudders), public and private policymakers have been unable to maintain sufficient interest in identifying and solving problems with quality to change the way in which care is delivered. We discuss why it is hard to keep quality on the policy agenda and suggest short-term steps that are necessary if quality is to improve here and in the rest of the world. [ABSTRACT FROM AUTHOR]
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- 2001
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7. Electronic health records in ambulatory care.
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Armstrong MJ, Booth C, Spinello IM, Kaufman JL, Mhyre JG, DesRoches CM, and Blumenthal D
- Published
- 2008
8. Clinician and Patient Perspectives on the Exchange of Sensitive Social Determinants of Health Information.
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DesRoches CM, Wachenheim D, Garcia A, Harcourt K, Henry J, Shah R, and Patel V
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- Humans, Male, Female, United States, Adult, Middle Aged, Attitude of Health Personnel, Physician-Patient Relations, Social Determinants of Health, Focus Groups, Qualitative Research
- Abstract
Importance: Social determinant of health (SDOH) data are essential to individualized care and reducing health disparities. However, there is little standardization in the way that SDOH data are collected, and barriers to increasing the collection of such data exist at both the patient and clinician levels., Objective: To evaluate clinician, patient, and care partner perspectives on the barriers to and facilitators of patients sharing SDOH information with their clinicians., Design, Setting, and Participants: This qualitative study included clinicians, patients, and care partners across the United States. Focus groups were conducted between September 2022 and February 2023 to understand the experience of collecting, documenting, and exchanging SDOH data., Main Outcomes and Measures: Rapid assessment procedures were used to analyze focus group transcripts, creating summaries, codes, and themes mapped directly to the project research questions., Results: A total of 235 individuals participated, including 109 (46.4%) clinicians (60 [55.0%] male; 25 [22.9%] Asian, 2 [1.8%] Black, and 74 [67.9%] White) and 126 (53.6%) patients and care partners (45 [35.7%] male; 1 [0.8%] Asian, 48 [38.1%] Black, and 64 [50.8%] White). Clinicians and patients agreed that SDOH data are important for clinicians to know. Both clinicians and patients wanted a structured, standardized way to collect SDOH data in the future, accompanied by time for more in-depth discussion during the visit. However, they highlighted numerous issues that impact collecting these data, including beliefs about how the information will be used, the clinician-patient relationship, having enough of the right staff, time needed to collect SDOH information, and technology used to collect the data (eg, usability, standardization)., Conclusions and Relevance: This qualitative study of the experience of collecting, documenting, and exchanging SDOH data underscores the ongoing barriers to widespread adoption of uniform approaches to SDOH data documentation as well as factors that may help lower those barriers, such as trusting patient-clinician relationships, greater transparency in how the data will be used, and targeted resources. A multifaceted approach to addressing the concerns raised by clinicians, patients, and care partners is required to ensure that such data can be captured in a way that improves care and allows for progress toward an equitable health care system.
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- 2024
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9. Embedding Authorship Identity into a Portal-Based Agenda Setting Intervention to Support Older Adults and Care Partners.
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Lum HD, Cassidy J, Lin CT, DesRoches CM, Shanbhag P, Gleason KT, Powell DS, Peereboom D, Riffin CA, Smith JM, Wec A, and Wolff JL
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Background: Patients, families, and clinicians increasingly communicate through patient portals. Due to potential for multiple authors, clinicians need to know who is communicating with them. OurNotes is a portal-based pre-visit agenda setting questionnaire. This study adapted OurNotes to include a self-identification question to help clinicians interpret information authored by nonpatients., Objectives: To describe adapted OurNotes use and clinician feedback to inform broader implementation., Design: Evaluation of adapted OurNotes in a geriatric practice., Participants: Older adults with a portal account and a clinic visit; eight clinicians were interviewed., Intervention: OurNotes adaptation to clarify whether the author is the patient, the patient with help, or a nonpatient., Approach: Cross-sectional chart review of OurNotes completion, patient characteristics, and visit topics by author type. Clinician interviews explored experiences with OurNotes., Results: Out of 503 visits, 134 (26%) OurNotes questionnaires were completed. Most respondents (n = 92; 69%) identified as the patient, 18 (14%) identified as the patient with help, and 24 (17%) identified as someone other than the patient. On average, patients who authored their own OurNotes were younger (80.9 years) compared to patients who received assistance (85.8 years), or patients for whom someone else authored OurNotes (87.8 years) (p < 0.001). A diagnosis of cognitive impairment was present among 20% of patients who self-authored OurNotes vs. 79% of patients where someone else authored OurNotes (p < 0.001). Topics differed when OurNotes was authored by patients vs. nonpatients. Symptoms (52% patient vs. 83% nonpatient, p = 0.004), community resources (6% vs. 42%, p < 0.001), dementia (5% vs. 21%, p = 0.009), and care partner concerns (1% vs. 12%, p = 0.002) were more often mentioned by nonpatients. Clinicians valued the self-identification question for increasing transparency about who provided information., Conclusions: A self-identification question can identify nonpatient authors of OurNotes. Future steps include evaluating whether transparency improves care quality, especially when care partners are involved., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)
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- 2024
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10. Shared Access to Adults' Patient Portals: A Secret Shopper Exercise.
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Wachenheim D, Hurwitz I, Dukhanin V, Wolff JL, and DesRoches CM
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- Humans, Adult, Male, Female, Access to Information, Middle Aged, Patient Portals
- Abstract
Background: Millions of Americans manage their health care with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy exchange with the patient's care team. Shared access provides care partners with a validated and secure method for accessing the patient's portal account using their own login credentials. Shared access provides extra privacy protection and control to the patient, who designates which individuals can view their record. It also reduces confusion for the care team when interacting with the care partner via the portal. Shared access is underutilized among adult patients' care partners., Objectives: Investigate the process of granting or receiving shared access at multiple health care organizations in the United States to learn about barriers and facilitators experienced by patients and care partners., Methods: The Shared Access Learning Collaborative undertook a "Secret Shopper" exercise. Participants attempted to give or gain shared access to another adult's portal account. After each attempt they completed a 14-question survey with a mix of open- and closed-ended questions., Results: Eighteen participants attempted to grant or receive shared access a total of 24 times. Fifteen attempts were successful. Barriers to success included requiring paper forms with signatures, lack of knowledgeable staff, lack of access to technical support, and difficult-to-navigate technology. Facilitators included easy-to-navigate online processes and accessible technical help. Participants who were successful in gaining shared access reported feeling more informed and able to engage in shared decision-making., Conclusion: The outcomes of our secret shopper exercise underscore the importance of collaboration aimed at learning from diverse encounters and disseminating the best practices. This is essential to address technical, informational, and organizational obstacles that may impede the widespread and accessible adoption of shared access., Competing Interests: None declared., (Thieme. All rights reserved.)
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- 2024
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11. Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care.
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Salmi L, Peereboom D, Dorr DA, Graham LR, Wolff JL, and DesRoches CM
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- Humans, Electronic Health Records, Caregivers, Patient Participation methods, Patient Portals
- Abstract
The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient's identity credentials-a "do-it-yourself" solution in conflict with a health systems' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients., (©Liz Salmi, Danielle Peereboom, David A Dorr, Leilani R Graham, Jennifer L Wolff, Catherine M DesRoches. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.06.2024.)
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- 2024
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12. Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.
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Riffin C, Cassidy J, Smith JM, Begler E, Peereboom D, Lum HD, DesRoches CM, and Wolff JL
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Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners ( N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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- 2024
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13. Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.
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Wolff JL, Wec A, Peereboom D, Gleason KT, Amjad H, Burgdorf JG, Cassidy J, DesRoches CM, Fabius CD, Green AR, Lin CT, Nothelle SK, Powell DS, Riffin CA, Smith J, and Lum HD
- Abstract
Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified., Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems., Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting., Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems., Competing Interests: CT Lin reports serving as an unpaid advisory board member to Doximity Telehealth and Epic Physician Advisory Council. The remaining authors have nothing to disclose., (© 2024 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)
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- 2024
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14. Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.
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Dukhanin V, Wolff JL, Salmi L, Harcourt K, Wachenheim D, Byock I, Gonzales MJ, Niehus D, Parshley M, Reay C, Epstein S, Mohile S, Farrell TW, Supiano MA, Jajodia A, and DesRoches CM
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- Humans, Aged, Stakeholder Participation, Delivery of Health Care, Patients, Communication, Patient Portals
- Abstract
Background: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited., Objective: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals., Methods: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs., Results: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits., Conclusions: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners., (©Vadim Dukhanin, Jennifer L Wolff, Liz Salmi, Kendall Harcourt, Deborah Wachenheim, Ira Byock, Matthew J Gonzales, Doug Niehus, Marianne Parshley, Caroline Reay, Sara Epstein, Supriya Mohile, Timothy W Farrell, Mark A Supiano, Anushka Jajodia, Catherine M DesRoches, The Shared Access Project Team. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 22.11.2023.)
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- 2023
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15. How Hospitals Are Addressing The Effects Of Racism: A Mixed-Methods Study Of Hospital Equity Officers.
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Weissman JS, Adler RR, Betancourt J, Tan-McGrory A, Lewis JA, DesRoches CM, Pomer A, Singh E, Liebig A, Ilkhani S, and Diviti S
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- Humans, Healthcare Disparities, Racism, Health Equity
- Abstract
Hospital equity officers have become critical leaders in the effort to address the determinants of health care disparities, including structural racism. In this mixed-methods study, we surveyed a national sample of equity officers and interviewed a subset of respondents to provide additional perspective. About one-half of survey respondents reported at least some obstacles to achieving their health equity objectives, including racist beliefs among people working in their hospitals and health care systems, policies that perpetuate racism, and a lack of staff diversity. To address these challenges, some hospitals are collecting information about instances of racism, reviewing clinical algorithms for evidence of bias, or forming community partnerships. However, in interviews, equity officers pointed out that racism is a public health issue that cannot be adequately addressed solely within the health care system. Given the relative newness of most hospital equity officer positions, our research may be viewed as an early glimpse into the challenges and opportunities of this evolving work.
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- 2023
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16. Partnering with Patients and Families to Improve Diagnostic Safety through the OurDX Tool: Effects of Race, Ethnicity, and Language Preference.
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Bourgeois FC, Hart NJ, Dong Z, Ngo LH, DesRoches CM, Thomas EJ, and Bell SK
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- Humans, Child, Cross-Sectional Studies, Ethnicity, Language
- Abstract
Background: Patients and families at risk for health disparities may also be at higher risk for diagnostic errors but less likely to report them., Objectives: This study aimed to explore differences in race, ethnicity, and language preference associated with patient and family contributions and concerns using an electronic previsit tool designed to engage patients and families in the diagnostic process (DxP)., Methods: Cross-sectional study of 5,731 patients and families presenting to three subspecialty clinics at an urban pediatric hospital May to December 2021 who completed a previsit tool, codeveloped and tested with patients and families. Prior to each visit, patients/families were invited to share visit priorities, recent histories, and potential diagnostic concerns. We used logistic regression to determine factors associated with patient-reported diagnostic concerns. We conducted chart review on a random subset of visits to review concerns and determine whether patient/family contributions were included in the visit note., Results: Participants provided a similar mean number of contributions regardless of patient race, ethnicity, or language preference. Compared with patients self-identifying as White, those self-identifying as Black (odds ratio [OR]: 1.70; 95% confidence interval [CI]: [1.18, 2.43]) or "other" race (OR: 1.48; 95% CI: [1.08, 2.03]) were more likely to report a diagnostic concern. Participants who preferred a language other than English were more likely to report a diagnostic concern than English-preferring patients (OR: 2.53; 95% CI: [1.78, 3.59]. There were no significant differences in physician-verified diagnostic concerns or in integration of patient contributions into the note based on race, ethnicity, or language preference., Conclusion: Participants self-identifying as Black or "other" race, or those who prefer a language other than English were 1.5 to 2.5 times more likely than their counterparts to report potential diagnostic concerns when proactively asked to provide this information prior to a visit. Actively engaging patients and families in the DxP may uncover opportunities to reduce the risk of diagnostic errors and potential safety disparities., Competing Interests: None declared., (The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/).)
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- 2023
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17. Catalyzing dementia care through the learning health system and consumer health information technology.
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Wolff JL, DesRoches CM, Amjad H, Burgdorf JG, Caffrey M, Fabius CD, Gleason KT, Green AR, Lin CT, Nothelle SK, Peereboom D, Powell DS, Riffin CA, and Lum HD
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- Humans, Caregivers, Quality Improvement, Dementia therapy, Learning Health System, Alzheimer Disease therapy
- Abstract
To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer-oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)
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- 2023
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18. Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool.
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Bell SK, Dong ZJ, Desroches CM, Hart N, Liu S, Mahon B, Ngo LH, Thomas EJ, and Bourgeois F
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- Adult, Humans, Child, Emotions, Health Facilities, Probability, Patients, Delivery of Health Care
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Objective: Patients and families are key partners in diagnosis, but methods to routinely engage them in diagnostic safety are lacking. Policy mandating patient access to electronic health information presents new opportunities. We tested a new online tool ("OurDX") that was codesigned with patients and families, to determine the types and frequencies of potential safety issues identified by patients/families with chronic health conditions and whether their contributions were integrated into the visit note., Methods: Patients/families at 2 US healthcare sites were invited to contribute, through an online previsit survey: (1) visit priorities, (2) recent medical history/symptoms, and (3) potential diagnostic concerns. Two physicians reviewed patient-reported diagnostic concerns to verify and categorize diagnostic safety opportunities (DSOs). We conducted a chart review to determine whether patient contributions were integrated into the note. We used descriptive statistics to report implementation outcomes, verification of DSOs, and chart review findings., Results: Participants completed OurDX reports in 7075 of 18 129 (39%) eligible pediatric subspecialty visits (site 1), and 460 of 706 (65%) eligible adult primary care visits (site 2). Among patients reporting diagnostic concerns, 63% were verified as probable DSOs. In total, probable DSOs were identified by 7.5% of pediatric and adult patients/families with underlying health conditions, respectively. The most common types of DSOs were patients/families not feeling heard; problems/delays with tests or referrals; and problems/delays with explanation or next steps. In chart review, most clinician notes included all or some patient/family priorities and patient-reported histories., Conclusions: OurDX can help engage patients and families living with chronic health conditions in diagnosis. Participating patients/families identified DSOs and most of their OurDX contributions were included in the visit note., (© The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)
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- 2023
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19. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal.
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Steitz BD, Turer RW, Lin CT, MacDonald S, Salmi L, Wright A, Lehmann CU, Langford K, McDonald SA, Reese TJ, Sternberg P, Chen Q, Rosenbloom ST, and DesRoches CM
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- Adult, Humans, Female, Middle Aged, Male, Attitude, Surveys and Questionnaires, Delivery of Health Care, Academic Medical Centers, Patient Portals
- Abstract
Importance: The 21st Century Cures Act Final Rule mandates the immediate electronic availability of test results to patients, likely empowering them to better manage their health. Concerns remain about unintended effects of releasing abnormal test results to patients., Objective: To assess patient and caregiver attitudes and preferences related to receiving immediately released test results through an online patient portal., Design, Setting, and Participants: This large, multisite survey study was conducted at 4 geographically distributed academic medical centers in the US using an instrument adapted from validated surveys. The survey was delivered in May 2022 to adult patients and care partners who had accessed test results via an online patient portal account between April 5, 2021, and April 4, 2022., Exposures: Access to test results via a patient portal between April 5, 2021, and April 4, 2022., Main Outcomes and Measures: Responses to questions related to demographics, test type and result, reaction to result, notification experience and future preferences, and effect on health and well-being were aggregated. To evaluate characteristics associated with patient worry, logistic regression and pooled random-effects models were used to assess level of worry as a function of whether test results were perceived by patients as normal or not normal and whether patients were precounseled., Results: Of 43 380 surveys delivered, there were 8139 respondents (18.8%). Most respondents were female (5129 [63.0%]) and spoke English as their primary language (7690 [94.5%]). The median age was 64 years (IQR, 50-72 years). Most respondents (7520 of 7859 [95.7%]), including 2337 of 2453 individuals (95.3%) who received nonnormal results, preferred to immediately receive test results through the portal. Few respondents (411 of 5473 [7.5%]) reported that reviewing results before they were contacted by a health care practitioner increased worry, though increased worry was more common among respondents who received abnormal results (403 of 2442 [16.5%]) than those whose results were normal (294 of 5918 [5.0%]). The result of the pooled model for worry as a function of test result normality was statistically significant (odds ratio [OR], 2.71; 99% CI, 1.96-3.74), suggesting an association between worry and nonnormal results. The result of the pooled model evaluating the association between worry and precounseling was not significant (OR, 0.70; 99% CI, 0.31-1.59)., Conclusions and Relevance: In this multisite survey study of patient attitudes and preferences toward receiving immediately released test results via a patient portal, most respondents preferred to receive test results via the patient portal despite viewing results prior to discussion with a health care professional. This preference persisted among patients with nonnormal results.
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- 2023
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20. Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes.
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Bell SK, Bourgeois F, Dong J, Gillespie A, Ngo LH, Reader TW, Thomas EJ, and Desroches CM
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- Humans, Female, Documentation, Electronic Health Records, Patients
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Policy Points Patients and families can identify clinically relevant errors, including "blindspots"-safety hazards that are difficult for clinicians or organizations to see. Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes. Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays., Context: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"-potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe., Method: We used mixed methods to analyze patient-reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification., Findings: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low-level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self-identifying as Black, Asian, other, or multiple races; and participants who deferred decision-making to providers were less likely to report a blindspot., Conclusion: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians-underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient-reported blindspots, and promote equity in note access and blindspot reporting., (© 2022 Milbank Memorial Fund.)
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- 2022
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21. Open notes in patient care: confining deceptive placebos to the past?
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Blease C and DesRoches CM
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- Ethics, Medical, Humans, Nocebo Effect, Patient Access to Records, Research Design, Surveys and Questionnaires, Electronic Health Records, Patient Care, Placebos
- Abstract
Increasing numbers of health organisations are offering some or all of their patients access to the visit notes housed in their electronic health records (so-called 'open notes'). In some countries, including Sweden and the USA, this innovation is advanced with patients using online portals to access their clinical records including the visit summaries written by clinicians. In many countries, patients can legally request copies of their records; however, open notes are different because this innovation offers patients rapid, real-time access via electronic devices. In this brief report, we explore what open notes might mean for placebo use in clinical care. Survey research into patient access to their clinical notes shows that increased transparency enhances patients' understanding about their medications and augments engagement with their care. We reflect on the consequences of access for placebo prescribing, particularly for the common practice of deceptive placebo use, in which patients are not aware they are being offered a placebo. In addition, we explore how open notes might facilitate placebo and nocebo effects among patients. Bridging placebo studies with medical ethics, we identify a range of empirical research gaps that now warrant further study., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2022
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22. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care.
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Bell SK, Bourgeois F, DesRoches CM, Dong J, Harcourt K, Liu SK, Lowe E, McGaffigan P, Ngo LH, Novack SA, Ralston JD, Salmi L, Schrandt S, Sheridan S, Sokol-Hessner L, Thomas G, and Thomas EJ
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- Communication, Humans, Patient Reported Outcome Measures, Reproducibility of Results, Ambulatory Care, Benchmarking
- Abstract
Background: Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician's view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning., Method: A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet's AC1 and Cohen's kappa statistic. We considered agreement coefficients 0.61-0.8=good agreement and 0.81-1.00=excellent agreement., Results: The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88)., Conclusions: The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2022
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23. Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.
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Wolff JL, Dukhanin V, Burgdorf JG, and DesRoches CM
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Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery., (©Jennifer L Wolff, Vadim Dukhanin, Julia G Burgdorf, Catherine M DesRoches. Originally published in JMIR Aging (https://aging.jmir.org), 04.05.2022.)
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- 2022
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24. Care partners reading patients' visit notes via patient portals: Characteristics and perceptions.
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Jackson SL, Shucard H, Liao JM, Bell SK, Fossa A, Payne TH, Reisch LM, Radick AC, DesRoches CM, Fitzgerald P, Leveille S, Walker J, and Elmore JG
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- Caregivers, Child, Electronic Health Records, Humans, Reading, SARS-CoV-2, COVID-19, Patient Portals
- Abstract
Background: Care partners are key members of patients' health care teams, yet little is known about their experiences accessing patient information via electronic portals., Objective: To better understand the characteristics and perceptions of care partners who read patients' electronic visit notes., Patient Involvement: Focus groups with diverse patients from a community health center provided input into survey development., Methods: We contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed., Results: Respondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners' perceptions of importance were consistently more positive than patients' perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients., Discussion: Care partners value electronic access to patients' health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members., Practical Value: Patient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner's input should be used to optimize portal design and electronic access to patient information., Competing Interests: Declaration of Competing Interest The authors report no competing financial or personal relationships with other people or organizations that could inappropriately influence this work., (Copyright © 2021 The Authors. Published by Elsevier B.V. All rights reserved.)
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- 2022
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25. Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?
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Blease CR, Delbanco T, Torous J, Ponten M, DesRoches CM, Hagglund M, Walker J, and Kirsch I
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- Electronic Health Records, Humans, Surveys and Questionnaires, Documentation, Nocebo Effect
- 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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- 2022
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26. How do older patients with chronic conditions view reading open visit notes?
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DesRoches CM, Salmi L, Dong Z, and Blease C
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- Aged, Aged, 80 and over, Cross-Sectional Studies, Female, Humans, Male, Patient Portals, Reading, United States, Chronic Disease psychology, Electronic Health Records, Information Dissemination, Patient Medication Knowledge, Patient Participation psychology
- Abstract
Background: We examine the experiences with and perceptions of the effect of reading clinical outpatient visit notes on patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients., Methods: A cross-sectional survey was conducted via patient portals at three diverse healthcare organizations in the United States: Beth Israel Deaconess Medical Center (Boston, MA), UW Medical Center (Seattle, WA), and Geisinger Health System (Danville, PA). Participants were aged 65 and older patient portal users who read at least one clinical note over the 12 months before the survey. We examined the effect of note reading on patient engagement and managing medications., Results: The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes., Conclusions: Older patients with chronic conditions are particularly vulnerable to misremembering and mismanaging their care and medication plans. Findings from this study suggest that these patients and their care partners could receive important benefits from accessing their notes. Healthcare organizations should work to maximize patient's engagement with their health information both through the patient portal and through other methods to ensure that patients and the healthcare systems reap the full benefit of the increased transparency of medical records., (© 2021 The American Geriatrics Society.)
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- 2021
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27. Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care.
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Lam BD, Bourgeois F, DesRoches CM, Dong Z, and Bell SK
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The Cures Act made access to electronic visit notes ('open notes') nearly universal across the USA, and efforts to share open notes with patients are underway worldwide. This landmark policy change provides an opportunity to engage adolescents and young adults (AYA) early in their care, yet little is known about their attitudes related to reading notes. We compared the responses of 332 AYA (13-25 years old) and 6,914 adults (>25 years old) in a 2016 survey at two USA academic adult and paediatric hospitals. Over 85% of AYA and adults with available notes reported reading at least one note in the prior year. AYA reported similar benefits from note-reading to adults in 15 outcomes related to engagement, relational effects and safety behaviours, supporting efforts to engage AYA as partners in their care using open notes., (© Royal College of Physicians 2021. All rights reserved.)
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- 2021
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28. The benefits and harms of open notes in mental health: A Delphi survey of international experts.
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Blease C, Kharko A, Hägglund M, O'Neill S, Wachenheim D, Salmi L, Harcourt K, Locher C, DesRoches CM, and Torous J
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- Consensus, Health Personnel, Humans, Surveys and Questionnaires, United States, Consumer Health Information legislation & jurisprudence, Disclosure legislation & jurisprudence, Electronic Health Records legislation & jurisprudence, Government Regulation
- 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., Competing Interests: The authors have declared that no competing interests exist.
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- 2021
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29. Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey.
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Turer RW, DesRoches CM, Salmi L, Helmer T, and Rosenbloom ST
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- Adult, COVID-19 Testing, Humans, Perception, SARS-CoV-2, United States, COVID-19, Patient Portals
- Abstract
Background: In the United States, attention has been focused on "open notes" and "open results" since the Office of the National Coordinator for Health Information Technology implemented the 21st Century Cures Act Final Rule on information blocking. Open notes is an established best practice, but open results remains controversial, especially for diseases associated with stigma, morbidity, and mortality. Coronavirus disease 2019 (COVID-19) is associated with all three of these effects and represents an ideal disease for the study of open results for sensitive test results., Objectives: This study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician., Methods: We surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19-related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others., Results: Users were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of non-Hispanic white, highly educated, English-speaking patients., Conclusion: Overall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results., Competing Interests: None declared., (Thieme. All rights reserved.)
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- 2021
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30. Patients, clinicians and open notes: information blocking as a case of epistemic injustice.
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Blease C, Salmi L, Rexhepi H, Hägglund M, and DesRoches CM
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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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)
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- 2021
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31. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts.
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Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, Salmi L, Wachenheim D, and Hägglund M
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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., (©Charlotte Blease, John Torous, Anna Kharko, Catherine M DesRoches, Kendall Harcourt, Stephen O'Neill, Liz Salmi, Deborah Wachenheim, Maria Hägglund. Originally published in JMIR Mental Health (http://mental.jmir.org), 16.04.2021.)
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- 2021
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32. Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines.
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Blease CR, O'Neill SF, Torous J, DesRoches CM, and Hagglund M
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- Humans, Mental Disorders psychology, Physician-Patient Relations, Psychiatry, United States, Communication, Electronic Health Records standards, Mental Disorders therapy, Motivation ethics, Patient Access to Records standards
- Abstract
Abstract: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)
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- 2021
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33. Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness.
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Blease C, Dong Z, Torous J, Walker J, Hägglund M, and DesRoches CM
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- Female, Humans, Male, Middle Aged, Retrospective Studies, United States, Medication Adherence, Mental Disorders psychology, Perception physiology, Reading
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- 2021
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34. US policy requires immediate release of records to patients.
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Salmi L, Blease C, Hägglund M, Walker J, and DesRoches CM
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- Humans, Information Dissemination legislation & jurisprudence, United States, Access to Information legislation & jurisprudence, Electronic Health Records, Health Policy legislation & jurisprudence, Patient Rights legislation & jurisprudence
- Abstract
Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and declare the following interests: LS, CB, and CMB receive financial support in the form of grants from the Cambia Health Foundation, the John A Hartford Foundation, the New York State Health Foundation, the Department of Health and Human Services Office of the National Coordinator for Health Information Technology, and the Agency for Health Care Quality and Research. LS serves on the BMJ patient advisory panel and on the volunteer board of directors for the National Brain Tumor Society. MH is funded by several public research grants from NordForsk, Forte (the Swedish research council for health, working life and welfare), and AFA.
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- 2021
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35. New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians.
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Blease C, Walker J, DesRoches CM, and Delbanco T
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- Humans, Electronic Health Records, Physician-Patient Relations
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- 2021
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36. Open Notes in Oncology: Patient versus Oncology Clinician Views.
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Salmi L, Dong ZJ, Yuh B, Walker J, and DesRoches CM
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- Aged, Aged, 80 and over, Electronic Health Records, Female, Humans, Male, National Cancer Institute (U.S.), Surveys and Questionnaires, United States, Neoplasms psychology, Patient Access to Records psychology, Physician's Role psychology
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- 2020
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37. Healthcare in the new age of transparency.
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DesRoches CM
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- Aged, Communication, Delivery of Health Care, Electronic Health Records, Humans, United States, Medicare, Renal Dialysis
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Debates around access to and ownership of an individual's digital information have taken center stage in health care. A decade ago, the idea of offering patients ready access to their clinical notes was a fringe idea. Today, information transparency in health care is a pressing legislative and regulatory issue in the United States and elsewhere. The 21st Century Cures Act of 2016 requires that clinicians and health care organizations give patients electronic access to the information in their electronic medical records. Rules to enact this legislative priority by the Office of the National Coordinator for Health Information Technology and the Centers for Medicare and Medicaid Services substantially expanded the types of information that must be easily accessible to patients and exchanged among clinicians in electronic form. A growing body of research supports the notion that sharing transparent medical records, including clinical notes with patients, can help to strengthen communication, trust in clinicians, and patient engagement. Patients receiving dialysis may receive particular benefits from this greater transparency due to their increased risk for fragmented care. In the paper, we review the decade of research focused on the effects of sharing clinical notes with patients and the implications for improved engagement and care., (© 2020 Wiley Periodicals LLC.)
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- 2020
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38. US primary care in 2029: A Delphi survey on the impact of machine learning.
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Blease C, Kharko A, Locher C, DesRoches CM, and Mandl KD
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- Adult, Female, Forecasting, Humans, Male, Medical Informatics, Middle Aged, Surveys and Questionnaires, Machine Learning trends, Primary Health Care trends
- 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., Conclusions: 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., Competing Interests: The authors have declared that no competing interests exist.
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- 2020
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39. Primary care providers' use of and attitudes towards placebos: An exploratory focus group study with US physicians.
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Bernstein MH, Locher C, Stewart-Ferrer S, Buergler S, DesRoches CM, Dossett ML, Miller FG, Grose D, and Blease CR
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- Female, Focus Groups, Humans, Interviews as Topic, Male, Middle Aged, Placebo Effect, Placebos therapeutic use, Practice Patterns, Physicians', Primary Health Care, United States, Attitude of Health Personnel, Physicians psychology, Placebos administration & dosage
- Abstract
Objective: To examine how primary care physicians define placebo concepts, use placebos in clinical practice, and view open-label placebos (OLPs)., Design: Semi-structured focus groups that were audio-recorded and content-coded., Methods: Two focus groups with a total of 15 primary care physicians occurred at medical centres in the New England region of the United States. Prior experience using placebo treatments and attitudes towards open-label placebos were explored. Themes were analysed using an inductive data-driven approach., Results: Physicians displayed a nuanced understanding of placebos and placebo effects in clinical contexts which sometimes focused on relational factors. Some respondents reported that they prescribed treatments with no known pharmacological effect for certain conditions and symptoms ('impure placebos') and that such prescriptions were more common for pain disorders, functional disorders, and medically unexplained symptoms. Opinions about OLP were mixed: Some viewed OLPs favourably or considered them 'harmless'; however, others strongly rejected OLPs as disrespectful to patients. Other issues in relation to OLPs included the following: lack of guidelines, legal and reputational concerns, and the notion that such treatments would run counter to customary medical practice., Conclusions: A number of physicians reported prescribing impure placebos in clinical care. Although some primary care physicians were resistant to the possibility of recommending OLPs, others regarded OLPs more favourably, viewing them as potential treatments, albeit with restricted potential. Statement of contribution What is already known? Many physicians report prescribing drugs for the purposes of eliciting a placebo effect. Initial evidence for the efficacy of open-label placebos is promising. What does this study add? A more nuanced description of the circumstances under which primary care physicians report placebo prescribing. A qualitative account of physician attitudes about using open-label placebos in clinical practice., (© 2020 The British Psychological Society.)
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- 2020
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40. Physician and nurse practitioner roles in emergency, trauma, critical, and intensive care.
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Donelan K, DesRoches CM, Guzikowski S, Dittus RS, and Buerhaus P
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- Adult, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, United States, Critical Care statistics & numerical data, Emergency Service, Hospital statistics & numerical data, Nurse Practitioners statistics & numerical data, Nurse's Role, Physicians statistics & numerical data
- Abstract
Background: The delivery of emergency, trauma, critical, and intensive care services requires coordination among all members of the care team. Perceived teamwork and role clarity may vary among physicians (MDs) and nurse practitioners (NPs)., Purpose: To examine differences in perceived roles and responsibilities of NPs and MDs practicing in emergency, trauma, critical, and intensive care., Methods: Secondary Analysis of the National Survey of Emergency, Intensive, and Critical Care Nurse Practitioners and Physicians, a cross-sectional national survey of clinicians. Mail survey of randomly selected stratified cross-sectional samples of MDs and NPs drawn from national lists of clinicians in eligible specialties working in emergency, trauma, intensive, and critical care units in the United States. 814 clinicians (351 NPs and 463 MDs) were recruited from national by postal mail survey. Our initial sample included n = 2,063 clinicians, n = 1,031 NPs and n = 1,032 MDs in eligible specialties. Of these, 63.5% of NPs and 70.1% of MDs completed and returned the survey excluding those who were ineligible due to lack of current practice in a relevant specialty., Findings: NPs in ICU/CCU are more likely to be female and report working fewer hours than do MDs and provide direct care to more patients. 55% of NPs and 82% of MDs agree that their individual role in their unit is clear (p < .001); 34% of MDs and 42% of NPs agree that their unit is an example of excellent team work among professionals (p = 0.021); 41% of MD and 37% of NP clinicians (p = 0.061) agree that their teams are "prepared to provide outstanding care in a crisis or disaster." Perceived role clarity was significantly associated with increased perceptions of excellent teamwork and disaster preparedness., Discussion: At the time of this survey, and majority of NPs and MDs working in emergency, critical and intensive care did not agree that their teams were prepared for a crisis or disaster. Leaders of health organizations should encourage teamwork and professional role clarity to assist units to perform effectively in emergency and disaster preparedness., (Copyright © 2020 Elsevier Inc. All rights reserved.)
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- 2020
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41. Open notes in cancer care: coming soon to patients.
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Blease C, Salmi L, and DesRoches CM
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- COVID-19, Electronic Health Records, Humans, Neoplasms therapy, Pandemics, Coronavirus Infections epidemiology, Neoplasms epidemiology, Physician-Patient Relations, Pneumonia, Viral epidemiology
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- 2020
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42. Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes.
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Bell SK, Delbanco T, Elmore JG, Fitzgerald PS, Fossa A, Harcourt K, Leveille SG, Payne TH, Stametz RA, Walker J, and DesRoches CM
- Subjects
- Adolescent, Adult, Black or African American statistics & numerical data, Age Factors, Aged, Ambulatory Care, Asian statistics & numerical data, Diagnostic Tests, Routine, Educational Status, Female, Hispanic or Latino statistics & numerical data, Humans, Male, Medical History Taking, Medication Reconciliation, Middle Aged, Patient Acuity, Sex Factors, Surveys and Questionnaires, White People statistics & numerical data, Young Adult, Data Accuracy, Documentation standards, Electronic Health Records standards, Electronic Health Records statistics & numerical data
- Abstract
Importance: As health information transparency increases, patients more often seek their health data. More than 44 million patients in the US can now readily access their ambulatory visit notes online, and the practice is increasing abroad. Few studies have assessed documentation errors that patients identify in their notes and how these may inform patient engagement and safety strategies., Objective: To assess the frequency and types of errors identified by patients who read open ambulatory visit notes., Design, Setting, and Participants: In this survey study, a total of 136 815 patients at 3 US health care organizations with open notes, including 79 academic and community ambulatory care practices, received invitations to an online survey from June 5 to October 20, 2017. Patients who had at least 1 ambulatory note and had logged onto the portal at least once in the past 12 months were included. Data analysis was performed from July 3, 2018, to April 27, 2020., Exposures: Access to ambulatory care open notes through patient portals for up to 7 years (2010-2017)., Main Outcomes and Measures: Proportion of patients reporting a mistake and how serious they perceived the mistake to be, factors associated with finding errors characterized by patients as serious, and categories of patient-reported errors., Results: Of 136 815 patients who received survey invitations, 29 656 (21.7%) responded and 22 889 patients (mean [SD] age, 55.16 [15.96] years; 14 447 [63.1%] female; 18 301 [80.0%] white) read 1 or more notes in the past 12 months and completed error questions. Of these patients, 4830 (21.1%) reported a perceived mistake and 2043 (42.3%) reported that the mistake was serious (somewhat serious: 1563 [32.4%]; very serious: 480 [9.9%]). In multivariable analysis, female patients (relative risk [RR], 1.79; 95% CI, 1.72-1.85), more educated patients (RR, 1.38; 95% CI, 1.29-1.48), sicker patients (RR, 1.89; 95% CI, 1.84-1.94), those aged 45 to 64 years (RR, 2.23; 95% CI, 2.06-2.42), those 65 years or older (RR, 2.00; 95% CI, 1.73-2.32), and those who read more than 1 note (2-3 notes: RR, 1.82; 95% CI, 1.34-2.47; ≥4 notes: RR, 3.09; 95% CI, 2.02-4.73) were more likely to report a mistake that they found to be serious compared with their reference groups. After categorization of patient-reported very serious mistakes, those specifically mentioning the word diagnosis or describing a specific error in current or past diagnoses were most common (98 of 356 [27.5%]), followed by inaccurate medical history (85 of 356 [23.9%]), medications or allergies (50 of 356 [14.0%]), and tests, procedures, or results (30 of 356 [8.4%]). A total of 23 (6.5%) reflected notes reportedly written on the wrong patient. Of 433 very serious errors, 255 (58.9%) included at least 1 perceived error potentially associated with the diagnostic process (eg, history, physical examination, tests, referrals, and communication)., 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.
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- 2020
- Full Text
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43. Care Partners and Patient Portals-Faulty Access, Threats to Privacy, and Ample Opportunity.
- Author
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DesRoches CM, Walker J, and Delbanco T
- Subjects
- Adult, Caregivers, Hospitals, Humans, Privacy, Sexual Partners, Patient Portals
- Published
- 2020
- Full Text
- View/download PDF
44. The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients.
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DesRoches CM, Leveille S, Bell SK, Dong ZJ, Elmore JG, Fernandez L, Harcourt K, Fitzgerald P, Payne TH, Stametz R, Delbanco T, and Walker J
- Subjects
- Adult, Attitude of Health Personnel, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Electronic Health Records, Information Dissemination, Physician-Patient Relations, Physicians statistics & numerical data
- Abstract
Importance: The 21st Century Cures Act of 2016 requires that patients be given electronic access to all the information in their electronic medical records. The regulations for implementation of this law give patients far easier access to information about their care, including the notes their clinicians write., Objective: To assess clinicians' views and experiences with sharing clinical notes (open notes) with patients., Design, Setting, and Participants: Web-based survey study of physicians, advanced practice nurses, registered nurses, physician assistants, and therapists at 3 health systems in Boston, Massachusetts; Seattle, Washington; and rural Pennsylvania where notes have been shared across all outpatient specialties for at least 4 years. Participants were clinicians in hospital-based offices and community practices who had written at least 1 note opened by a patient in the year prior to the survey, which was administered from May 21, 2018, to August 31, 2018., Main Outcomes and Measures: Clinicians' experiences with and perceptions of sharing clinical notes with patients., Results: Invitations were sent to 6064 clinicians; 1628 (27%) responded. Respondents were more likely than nonrespondents to be female (65% vs 55%) and to be younger (mean [SD] age, 42.1 [12.6] vs 44.9 [12.7] years). The majority of respondents were physicians (951 [58%]), female (1023 [65%]), licensed to practice in 2000 or later (940 [61%]), and spent fewer than 40 hours per week in direct patient care (1083 [71%]). Most viewed open notes positively, agreeing they are a good idea (1182 participants [74%]); of 1314 clinicians who were aware that patients were reading their notes, 965 (74%) agreed that open notes were useful for engaging patients. In all, 798 clinicians (61%) would recommend the practice to colleagues. A total of 292 physicians (37%) reported spending more time on documentation, and many reported specific changes in the way they write their notes, the most frequent of which related to use of language that could be perceived as critical of the patient (422 respondents [58%]). Most physicians (1234 [78%]) favored being able to determine readily that their notes had been read by their patients., Conclusions and Relevance: In this survey of clinicians in a wide range of specialties who had several years of experience offering their patients ready access to their notes, more than two-thirds supported this new practice. Even among subgroups of clinicians who were less enthusiastic, most endorsed the idea of sharing notes and believed the practice could be helpful for engaging patients more actively in their care.
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- 2020
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45. Patients Managing Medications and Reading Their Visit Notes.
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DesRoches CM, Delbanco T, and Bell SK
- Subjects
- Humans, Surveys and Questionnaires, Patient Access to Records, Reading
- Published
- 2019
- Full Text
- View/download PDF
46. Association of State-Level Restrictions in Nurse Practitioner Scope of Practice With the Quality of Primary Care Provided to Medicare Beneficiaries.
- Author
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Perloff J, Clarke S, DesRoches CM, O'Reilly-Jacob M, and Buerhaus P
- Subjects
- Aged, Female, Humans, Male, Middle Aged, Physicians, Primary Care statistics & numerical data, Practice Patterns, Nurses', Retrospective Studies, United States, Medicare statistics & numerical data, Nurse Practitioners legislation & jurisprudence, Nurse Practitioners statistics & numerical data, Nurse's Role, Primary Health Care organization & administration, Quality of Health Care
- Abstract
Context: State scope of practice (SoP) laws impose significant restrictions on the services that a nurse practitioner (NP) may provide in some states, yet evidence about SoP limitations on the quality of primary care is very limited. Method: This study uses six different classifications of state regulations and bivariate and multivariate analyses to compare beneficiaries attributed to primary care nurse practitioners and primary care physicians in 2013 testing two hypotheses: (1) chronic disease management, cancer screening, preventable hospitalizations, and adverse outcomes of care provided by primary care nurse practitioners are better in reduced and restricted practice states compared to states without restrictions and (2) by decreasing access to care, SoP restrictions negatively affect the quality of primary care. Findings: Results show a lack of consistent association between quality of primary care provided by NPs and state SoP restrictions. Conclusion: State regulations restricting NP SoP do not improve the quality of care.
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- 2019
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47. Artificial Intelligence and the Future of Primary Care: Exploratory Qualitative Study of UK General Practitioners' Views.
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Blease C, Kaptchuk TJ, Bernstein MH, Mandl KD, Halamka JD, and DesRoches CM
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- Female, Humans, Male, Middle Aged, Qualitative Research, Surveys and Questionnaires, United Kingdom, Artificial Intelligence standards, General Practitioners standards, Primary Health Care methods
- Abstract
Background: The potential for machine learning to disrupt the medical profession is the subject of ongoing debate within biomedical informatics and related fields., Objective: This study aimed to explore general practitioners' (GPs') opinions about the potential impact of future technology on key tasks in primary care., Methods: In June 2018, we conducted a Web-based survey of 720 UK GPs' opinions about the likelihood of future technology to fully replace GPs in performing 6 key primary care tasks, and, if respondents considered replacement for a particular task likely, to estimate how soon the technological capacity might emerge. This study involved qualitative descriptive analysis of written responses ("comments") to an open-ended question in the survey., Results: Comments were classified into 3 major categories in relation to primary care: (1) limitations of future technology, (2) potential benefits of future technology, and (3) social and ethical concerns. Perceived limitations included the beliefs that communication and empathy are exclusively human competencies; many GPs also considered clinical reasoning and the ability to provide value-based care as necessitating physicians' judgments. Perceived benefits of technology included expectations about improved efficiencies, in particular with respect to the reduction of administrative burdens on physicians. Social and ethical concerns encompassed multiple, divergent themes including the need to train more doctors to overcome workforce shortfalls and misgivings about the acceptability of future technology to patients. However, some GPs believed that the failure to adopt technological innovations could incur harms to both patients and physicians., Conclusions: This study presents timely information on physicians' views about the scope of artificial intelligence (AI) in primary care. Overwhelmingly, GPs considered the potential of AI to be limited. These views differ from the predictions of biomedical informaticians. More extensive, stand-alone qualitative work would provide a more in-depth understanding of GPs' views., (©Charlotte Blease, Ted J Kaptchuk, Michael H Bernstein, Kenneth D Mandl, John D Halamka, Catherine M DesRoches. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 20.03.2019.)
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- 2019
- Full Text
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48. Computerization and the future of primary care: A survey of general practitioners in the UK.
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Blease C, Bernstein MH, Gaab J, Kaptchuk TJ, Kossowsky J, Mandl KD, Davis RB, and DesRoches CM
- Subjects
- Adult, Aged, Attitude of Health Personnel, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Primary Health Care, Referral and Consultation, Surveys and Questionnaires, United Kingdom, General Practitioners psychology, Medical Records Systems, Computerized
- Abstract
Objective: To describe the opinions of British general practitioners regarding the potential of future technology to replace key tasks carried out in primary care., Design: Cross sectional online survey., Participants: 1,474 registered GPs in the United Kingdom., Main Outcome Measures: Investigators measured GPs' opinions about the likelihood that future technology will be able to fully replace-not merely aid-the average GP in performing six primary care tasks; in addition, if GPs considered replacement for a particular task likely, the survey measured opinions about how many years from now this technological capacity might emerge., Results: A total of 720 (49%) responded to the survey. Most GPs believed it unlikely that technology will ever be able to fully replace physicians when it comes to diagnosing patients (489, 68%), referring patients to other specialists (444, 61%), formulating personalized treatment plans (441, 61%), and delivering empathic care (680, 94%). GPs were not in agreement about prognostics: one in two participants (380, 53%) considered it likely that technology will be fully capable of replacing physicians in performing this task, nearly half (187, 49%) of whom believed that the technological capacity will arise in the next ten years. Against these findings, the majority of GPs (578, 80%) believed it likely that future technology will be able to fully replace humans to undertake documentation; among them 261 (79%) estimated that the technological wherewithal would emerge during the next ten years. In general, age and gender were not correlated with opinions; nor was reported burnout and job satisfaction or whether GPs worked full time or part time., Conclusions: The majority of UK GPs in this survey were skeptical about the potential for future technology to perform most primary care tasks as well as or better than humans. However, respondents were optimistic that in the near future technology would have the capacity to fully replace GPs' in undertaking administrative duties related to patient documentation., Competing Interests: The authors have declared that no competing interests exist.
- Published
- 2018
- Full Text
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49. Harnessing the Consumer Movement.
- Author
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DesRoches CM and Salmi L
- Subjects
- Humans, United States, Movement
- Published
- 2018
- Full Text
- View/download PDF
50. Perceptions of Primary Care Notes by Patients With Mental Health Diagnoses.
- Author
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Klein JW, Peacock S, Tsui JI, O'Neill SF, DesRoches CM, and Elmore JG
- Subjects
- Adult, Ambulatory Care Facilities, Confidentiality, Female, Humans, Internet, Male, Mental Health Services, Middle Aged, Multivariate Analysis, Regression Analysis, Surveys and Questionnaires, Electronic Health Records, Mental Disorders psychology, Mental Disorders therapy, Perception, Physician-Patient Relations
- Abstract
There are concerns regarding whether patients with mental illness should be provided with access to their electronic medical records. This study compared perceptions of patients with (n = 400) and without (n = 2,134) a mental health diagnosis regarding access to primary care clinic notes through secure online portals. Eligible participants viewed at least 1 clinic note during a 12-month period. Administrative data were used to stratify patients by mental health diagnosis. As we hypothesized, patients with and without mental health diagnoses had similar perceptions about online access to notes., (© 2018 Annals of Family Medicine, Inc.)
- Published
- 2018
- Full Text
- View/download PDF
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