Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care.

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.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

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.

Catalyzing dementia care through the learning health system and consumer health information technology.

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.

Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes.

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.

Open notes in patient care: confining deceptive placebos to the past?

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.

Patients, clinicians and open notes: information blocking as a case of epistemic injustice.

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.

Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines.

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.

Healthcare in the new age of transparency.

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.

Physician and nurse practitioner roles in emergency, trauma, critical, and intensive care.

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.

Artificial Intelligence and the Future of Primary Care: Exploratory Qualitative Study of UK General Practitioners' Views.

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.

Quality of Primary Care Provided to Medicare Beneficiaries by Nurse Practitioners and Physicians.

OBJECTIVE: To examine differences in the quality of care provided by primary care nurse practitioners (PCNPs), primary care physicians (PCMDs), or both clinicians. DATA SOURCES: Medicare part A and part B claims during 2012-2013. STUDY DESIGN: 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. EXTRACTION METHODS: 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. PRINCIPAL FINDINGS: 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. CONCLUSIONS: 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.

Perceptions of Primary Care Notes by Patients With Mental Health Diagnoses.

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.

The quality of primary care provided by nurse practitioners to vulnerable Medicare beneficiaries.

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.

Perspectives of physicians and nurse practitioners on primary care practice.

BACKGROUND: The U.S. health care system is at a critical juncture in health care workforce planning. The nation has a shortage of primary care physicians. Policy analysts have proposed expanding the supply and scope of practice of nurse practitioners to address increased demand for primary care providers. These proposals are controversial. METHODS: From November 23, 2011, to April 9, 2012, we conducted a national postal-mail survey of 972 clinicians (505 physicians and 467 nurse practitioners) in primary care practice. Questionnaire domains included scope of work, practice characteristics, and attitudes about the effect of expanding the role of nurse practitioners in primary care. The response rate was 61.2%. RESULTS: Physicians reported working longer hours, seeing more patients, and earning higher incomes than did nurse practitioners. A total of 80.9% of nurse practitioners reported working in a practice with a physician, as compared with 41.4% of physicians who reported working with a nurse practitioner. Nurse practitioners were more likely than physicians to believe that they should lead medical homes, be allowed hospital admitting privileges, and be paid equally for the same clinical services. When asked whether they agreed with the statement that physicians provide a higher-quality examination and consultation than do nurse practitioners during the same type of primary care visit, 66.1% of physicians agreed and 75.3% of nurse practitioners disagreed. CONCLUSIONS: Current policy recommendations that are aimed at expanding the supply and scope of practice of primary care nurse practitioners are controversial. Physicians and nurse practitioners do not agree about their respective roles in the delivery of primary care. (Funded by the Gordon and Betty Moore Foundation and others.).

Disentangling the Linkage of Primary Care Features to Patient Outcomes: A Review of Current Literature, Data Sources, and Measurement Needs.

Primary care plays a central role in the provision of health care, and is an organizing feature for health care delivery systems in most Western industrialized democracies. For a variety of reasons, however, the practice of primary care has been in decline in the U.S. This paper reviews key primary care concepts and their definitions, notes the increasingly complex interplay between primary care and the broader health care system, and offers research priorities to support future measurement, delivery and understanding of the role of primary care features on health care costs and quality.

The Results Are Only as Good as the Sample: Assessing Three National Physician Sampling Frames.

BACKGROUND: Databases of practicing physicians are important for studies that require sampling physicians or counting the physician population in a given area. However, little is known about how the three main sampling frames differ from each other. OBJECTIVE: Our purpose was to compare the National Provider and Plan Enumeration System (NPPES), the American Medical Association Masterfile and the SK&A physician file. METHODS: We randomly sampled 3000 physicians from the NPPES (500 in six specialties). We conducted two- and three-way comparisons across three databases to determine the extent to which they matched on address and specialty. In addition, we randomly selected 1200 physicians (200 per specialty) for telephone verification. KEY RESULTS: One thousand, six hundred and fifty-five physicians (55 %) were found in all three data files. The SK&A data file had the highest rate of missing physicians when compared to the NPPES, and varied by specialty (50 % in radiology vs. 28 % in cardiology). NPPES and SK&A had the highest rates of matching mailing address information, while the AMA Masterfile had low rates compared with the NPPES. We were able to confirm 65 % of physicians' address information by phone. The NPPES and SK&A had similar rates of correct address information in phone verification (72-94 % and 79-92 %, respectively, across specialties), while the AMA Masterfile had significantly lower rates of correct address information across all specialties (32-54 % across specialties). CONCLUSIONS: None of the data files in this study were perfect; the fact that we were unable to reach one-third of our telephone verification sample is troubling. However, the study offers some encouragement for researchers conducting physician surveys. The NPPES and to a lesser extent, the SK&A file, appear to provide reasonably accurate, up-to-date address information for physicians billing public and provider insurers.