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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.

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.

BackgroundPatients 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.MethodA 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.ResultsThe 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).ConclusionsThe 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.

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.

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.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.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.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.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.

BACKGROUND: Sharing outpatient notes with patients may bring clinically important benefits, but notes may sometimes cause patients to feel judged or offended, and thereby reduce trust. OBJECTIVE: As part of a larger survey examining the effects of open notes, we sought to understand how many patients feel judged or offended due to something they read in outpatient notes, and why. DESIGN: We analyzed responses from a large Internet survey of adult patients who used secure patient portals and had at least 1 visit note available in a 12-month period at 2 large academic medical systems in Boston and Seattle, and in a rural integrated health system in Pennsylvania. PARTICIPANTS: Adult ambulatory patients with portal accounts in health systems that offered open notes for up to 7 years. APPROACH: (1) Quantitative analysis of 2 dichotomous questions, and (2) qualitative thematic analysis of free-text responses on what patients found judgmental or offensive. KEY RESULTS: Among 22,959 patient respondents who had read at least one note and answered the 2 questions, 2,411 (10.5%) reported feeling judged and/or offended by something they read in their note(s). Patients who reported poor health, unemployment, or inability to work were more likely to feel judged or offended. Among the 2,411 patients who felt judged and/or offended, 2,137 (84.5%) wrote about what prompted their feelings. Three thematic domains emerged: (1) errors and surprises, (2) labeling, and (3) disrespect. CONCLUSIONS: One in 10 respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.

ImportanceThe 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.ObjectiveTo assess patient and caregiver attitudes and preferences related to receiving immediately released test results through an online patient portal.Design, Setting, and ParticipantsThis 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.ExposuresAccess to test results via a patient portal between April 5, 2021, and April 4, 2022.Main Outcomes and MeasuresResponses 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.ResultsOf 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 RelevanceIn 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.

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.

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. PACESS (2016-00623)

BACKGROUND: Patients actively involved in their care demonstrate better health outcomes. Using secure internet portals, clinicians are increasingly offering patients access to their narrative visit notes (open notes), but we know little about their understanding of notes written by clinicians. OBJECTIVE: We examined patients’ views on the clarity, accuracy, and thoroughness of notes, their suggestions for improvement, and associations between their perceptions and willingness to recommend clinicians to others. DESIGN: We conducted an online survey of patients in 3 large health systems, June–October 2017. We performed a mixed methods analysis of survey responses regarding a self-selected note. PARTICIPANTS: Respondents were 21,664 patients aged 18 years or older who had read at least 1 open note in the previous 12 months. MAIN MEASURES: We asked to what degree the patient recalled understanding the note, whether it described the visit accurately, whether anything important was missing, for suggestions to improve the note, and whether they would recommend the authoring clinician to others. KEY RESULTS: Nearly all patients (96%) reported they understood all or nearly all of the self-selected note, with few differences by clinician type or specialty. Overall, 93% agreed or somewhat agreed the note accurately described the visit, and 6% reported something important missing from the note. The most common suggestions for improvement related to structure and content, jargon, and accuracy. Patients who reported understanding only some or very little of the note, or found inaccuracies or omissions, were much less likely to recommend the clinician to family and friends. CONCLUSIONS: Patients overwhelmingly report understanding their visit notes and usually find them accurate, with few disparities according to sociodemographic or health characteristics. They have many suggestions for improving their quality, and if they understand a note poorly or find inaccuracies, they often have less confidence in their clinicians.

UNSTRUCTURED 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.

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.

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.

ImportanceAs 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.ObjectiveTo 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.DesignAn online 3-round Delphi poll.SettingIn round 1 open-ended questions solicited feedback on the benefits and harms to patients of reading their mental health notes. Responses were coded to produce itemized statements. In Round 2 participants were asked to rate their agreement with each item along 7-point Likert scales. Responses were analyzed for consensus, set at a predetermined interquartile range of ≤ 1. In Round 3 items that did not reach consensus were redistributed.ParticipantsInternational 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 MeasuresAn expert-generated consensus on the benefits and risks of sharing mental health notes with patients.ResultsA total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items. 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.Conclusions and RelevanceThis 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.

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, Hagglund, 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.

This survey study examines how patients with a mental illness diagnosis who read at least 1 clinical note in the last year perceived its association with their medication adherence.

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.

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.

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.

ObjectiveTo solicit leading health informaticians’ predictions about the impact of AI/ML on primary care in the US in 2029.DesignA three-round online modified Delphi poll.ParticipantsTwenty-nine leading health informaticians.MethodsIn 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.ResultsA 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.ConclusionsThis 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.

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.

Highlights • MDs report that MDs are their team leaders in most circumstances; NPs are less likely to indicate that MDs lead their teams. • Less than half of MD or NP clinicians agree that they experience excellent team work in their units • Significantly more MDs than NPs agree their role in the care team is clear, Importance 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). Objective To examine differences in perceived roles and responsibilities of NPs and MDs practicing in emergency, trauma, critical and intensive care. Main Outcome(s) and Measure(s) Key clinical activities, perceptions of role clarity, teamwork and preparedness to function as a team in disaster Design Secondary Analysis of the National Survey of Emergency, Intensive and Critical Care Nurse Practitioners and Physicians, a 2015 cross-sectional national survey of clinicians. Setting 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. Participants 814 clinicians (351 NPs and 463 MDs) recruited from national by postal mail survey. Our initial sample included n=2063 clinicians, n=1031 NPs and n=1032 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 Results 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

Objective Prior studies suggest inviting patients to read their visit notes (OpenNotes) has important benefits for patient engagement. We utilized survey data to investigate our hypothesis that patients who read more notes would report greater shared decision making (SDM). Materials and Methods Our survey focused on the safety and quality implications of OpenNotes. 24 722 patients at an urban healthcare organization were invited to complete the survey, which included an item assessing the number of notes read and the CollaboRATE scale to measure SDM. We used log-binomial regression to estimate the relative probability of top CollaboRATE scores across number of notes read while controlling for several covariates. Results 6913 patients responded (28% response rate). Patients reading 4+ clinical notes in the past 12 months were 17% more likely to have top CollaboRATE scores when compared to patients who had not read a note in the previous 12 months (RR: 1.17, 95%CI: 1.04-1.32). Discussion There is a clear relationship between what SDM requires and the transparency OpenNotes provides. Access to clinicians’ notes can support the SDM model, which relies on efficient information exchange between clinicians and well-informed patients. Conclusion Our study showed evidence of a relationship between note reading and perceived SDM. Implementation of SDM is likely to expand, given its association with improved patient satisfaction, adherence, and medical decision making. Findings from this study highlight OpenNotes as a policy that institutions can implement as a facilitator of SDM and a manifestation of their commitment to patient autonomy and transparency.

To examine differences in the quality of care provided by primary care nurse practitioners (PCNPs), primary care physicians (PCMDs), or both clinicians.Medicare part A and part B claims during 2012-2013.Retrospective cohort design using standard risk-adjustment methodologies and propensity score weighting assessing 16 claims-based quality measures grouped into 4 domains of primary care: chronic disease management, preventable hospitalizations, adverse outcomes, and cancer screening.Continuously enrolled aged, disabled, and dual eligible beneficiaries who received at least 25% of their primary care services from a random sample of PCMDs, PCNPs, or both clinicians.Beneficiaries attributed to PCNPs had lower hospital admissions, readmissions, inappropriate emergency department use, and low-value imaging for low back pain. Beneficiaries attributed to PCMDs were more likely than those attributed to PCNPs to receive chronic disease management and cancer screenings. Quality of care for beneficiaries jointly attributed to both clinicians generally scored in the middle of the PCNP and PCMD attributed beneficiaries with the exception of cancer screening.The quality of primary care varies by clinician type, with different strengths for PCNPs and PCMDs. These comparative advantages should be considered when determining how to organize primary care to Medicare beneficiaries.

Objective Chronic disease management can require daily attention, and increased levels of patient activation and engagement. We examined whether patients with diabetes perceive a greater benefit to having electronic access to their doctors’ clinic notes compared to patients without diabetes. We hypothesized that easy electronic access to these notes may help patients with self-care by improving education and communication. Methods Survey of patients with and without diabetes in Massachusetts and Pennsylvania about perceptions of potential benefits and risks of reading their visit notes via an electronic patient information portal. Administrative data were used to identify patients with diabetes; we compared their perceptions to those of patients without diabetes. Results The majority of patients (both with and without diabetes) perceived a positive impact of using the portal. Patients with diabetes were significantly more likely to believe that having access to and reading their notes would help them take their medication better and take better care of themselves. Conclusions Patients with chronic diseases such as diabetes might receive an even greater benefit from access to their doctors’ notes than the general patient population. Practice implications Doctors should encourage their patients with diabetes (or other chronic diseases) to use patient portals.

Background Studies suggest nurse practitioners are heavily represented among primary care providers for vulnerable Medicare beneficiaries. Purpose The purpose of this study was to compare quality indicators among three groups of vulnerable beneficiaries managed by MDs and nurse practitioners (NPs). Methods The methods include retrospective cohort design examining 2012 and 2013 Medicare claims for three beneficiary groups: (a) initially qualified for the program due to disability, (b) dually eligible for Medicare and Medicaid, and (c) both disabled and dually eligible. Validated quality indicators in four domains were analyzed. Discussion Gaps in outcomes suggest better performance for primary care nurse practitioners (PCNPs) in preventable hospitalizations and adverse outcomes. Outcome gaps suggesting better performance for primary care physicians in chronic disease management were diminished for beneficiaries who were both disabled and dually eligible suggesting improved performance for PCNPs within this subpopulation. Conclusion These findings add new evidence indicating the quality of primary care provided to vulnerable Medicare beneficiaries by PCNPs is generally consistent with clinical guidelines and the less intensive use of costly health care services.

Patients who read their clinical notes via online patient portals (‘open notes’) report that doing so engages them actively in their care, improves their sense of control over their health and enhances safety.1–3 In several surveys, patients who are older, less educated, non-white or whose first language is not English report even greater benefits than do their counterparts.2–4 However, for many reasons, persons from these demographic groups are less likely to use health portals than other patient populations.5 Drawing on promising preliminary evidence,2–4 6 we suggest that open notes may, over time, prove important in the care of patients who are at risk of experiencing healthcare disparities. Consumers seek convenience, speed and security for their online data. In more than 10 countries worldwide—including Denmark, France, USA and Sweden—growing numbers of patients can now readily retrieve their clinical notes via portals.7 Studies suggest that the practice of sharing notes does not produce major disruptions to clinical workflow,1 and that clinicians with longer-term experience with the practice are more positive about it.8 For patients, evidence suggests strongly that the benefits of open notes outweigh the risks. In a recent large US survey conducted across three health systems with over 22 000 respondents, most reported that reading their notes was very important for taking care of their health (73%, 16 354/22 520), feeling more in control of their healthcare (70%, 15 726/22 515) and remembering their treatment plan (66%, 14 821/22 516).2 Surveys in Sweden indicate similarly that many patients feel more empowered and involved in their care as a result of reading their clinical notes.9 Disparities in health outcomes reflect multiple, often interrelated factors. They include environmental, economic, and social determinants, along with issues relating to accessibility and variable quality of the healthcare delivered. …

Patients and clinicians are equally frustrated by the slow pace of changeThe international movement pushing to increase transparency by giving patients easy access to their health information paral ...

Background Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. Objective The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. Methods A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. Results Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. Conclusions In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

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.