Perspectives from neuro-oncology providers on patient access to electronic records: a survey study.

Aim: To evaluate the neuro-oncology providers' experience with patient online access to electronic records. Methods: Cross-sectional survey for physicians and advanced care providers within the field of neuro-oncology in the USA. Results: 65 providers completed the survey, from all major regions of the USA. 58% reported that at least once per month, patients contacted them outside of an office visit about provider notes or a laboratory or imaging finding accessed online. 54% of providers did not think that all laboratory results should be released automatically, and only 25% of providers thought that all radiology reads should be released immediately. 97% thought that some patients suffered substantial distress viewing test results prior to appointments. Qualitative responses aligned with the quantitative results. Conclusion: Most neuro-oncology providers are concerned about the immediate release of laboratory and imaging findings to patients without guidance.

Prior studies had investigated the perspectives of medical providers on patients having immediate access to medical records. However, almost none of them focus on neuro-oncology. In our study, we distributed a survey electronically to neuro-oncology providers across the USA to seek their perspectives. Our results show that most neuro-oncology providers found patients having immediate access to their records to be useful. However, they raised concerns about the immediate release of laboratory and imaging findings to patients without guidance. Our study also included free responses from the neuro-oncology providers that could help mitigate this concern.

'Getting it write' in a new era of patient online access to primary care health records.

AIM: To explore how to help make online consultation notes easier for patient audiences to understand. BACKGROUND: Most patients in England will soon be able to access all new prospective entries (including free-text) within their online primary care health record via the NHS App or other online services. METHOD: We conducted interviews and focus group discussions with 26 patients from underserved communities. Participants responded to vignettes about fictional patient consultation scenarios and assessed the clarity of corresponding simulated records. Participants were then asked to identify potential comprehension issues, offensive content, or anxiety triggers. RESULTS: Most participants struggled to understand a large proportion of simulated notes, particularly medical acronyms, clinician shorthand, and non-clinical abbreviations. Participants also identified issues that may cause unintended offence or additional anxiety. Participants considered that most patients will struggle to fully understand the content of their consultation notes in their current format. They made a number of suggestions about how this service may be improved to meet the needs of patient audiences and maintain positive patient-clinician relationships. CONCLUSION: Opening up online record access to include patient audiences necessitates a significant cultural shift in the way that consultation notes are written and used. To maximise NHS investment in this policy and avoid worsening health inequalities, it is essential to ensure that all patients can understand and access the benefits of online access to their notes. To do this, clinicians need to be supported to manage the challenges of writing for patient audiences, while continuing to maintain effective clinical care.

Patient online access to medical records in general practice: Perceived effects after one year follow-up.

OBJECTIVE: Online access to medical records is expected to foster patient empowerment and patient-centred healthcare. However, data on actual experienced effects remain limited. We aimed to examine the development of effects patients perceive from online access. METHODS: A nationwide online survey (N = 1769) evaluated Dutch patients' use of online access and beliefs about its effects on 16 outcomes at baseline and one-year follow-up. Analyses of Variance (ANOVA) were used to examine within-person belief changes across three user groups: patients who 1) used online access before the study, 2) started use during the study, and 3) did not use it at all. RESULTS: There was a small decline in five beliefs around online access facilitating patient empowerment and participation in participants who started using online access during the study compared to at least one other user group. Most changes in beliefs did not differ between groups. CONCLUSION: No evidence of benefits from online access was found. The findings might indicate inadequacies in the current system of online access. Possibly, the benefits of online access are contingent upon portal improvements and changes in documentation practices. PRACTICE IMPLICATION: Records need to be easily accessible and comprehensible for patients. Consultation practices should enable patient participation.

Minors' and guardian access to and use of a national patient portal: A retrospective comparative case study of Sweden and Finland.

BACKGROUND: Approaches to implementing online record access (ORA) via patient portals for minors and guardians vary internationally, as more countries continue to develop patient-accessible electronic health records (PAEHR) systems. Evidence of ORA usage and country-specific practices to allow or block minors' and guardians' access to minors' records during adolescence (i.e. access control practices) may provide a broader understanding of possible approaches and their implications for minors' confidentiality and guardian support. AIM: To describe and compare minors' and guardian proxy users' PAEHR usage in Sweden and Finland. Furthermore, to investigate the use of country-specific access control practices. METHODS: A retrospective, observational case study was conducted. Data were collected from PAEHR administration services in Sweden and Finland and proportional use was calculated based on population statistics. Descriptive statistics were used to analyze the results. RESULTS: In both Sweden and Finland, the proportion of adolescents accessing their PAEHR increased from younger to older age-groups reaching the proportion of 59.9 % in Sweden and 84.8 % in Finland in the age-group of 17-year-olds. The PAEHR access gap during early adolescence in Sweden may explain the lower proportion of users among those who enter adulthood. Around half of guardians in Finland accessed their minor children's records in 2022 (46.1 %), while Swedish guardian use was the highest in 2022 for newborn children (41.8 %), and decreased thereafter. Few, mainly guardians, applied for extended access in Sweden. In Finland, where a case-by-case approach to access control relies on healthcare professionals' (HCPs) consideration of a minor's maturity, 95.8 % of minors chose to disclose prescription information to their guardians. CONCLUSION: While age-based access control practices can hamper ORA for minors and guardians, case-by-case approach requires HCP resources and careful guidance to ensure equality between patients. Guardians primarily access minors' records during early childhood and adolescents show willingness to share their PAEHR with parents.

Citizens' Access to Online Health Information - An International Survey of IMIA Member Countries.

Citizens' access to their online health information is pivotal. Therefore, this study examines citizens' access to their online health information across countries and healthcare settings. The study is based on a survey design targeting the 98 IMIA representatives of the national societies. Results indicate that Test results and Medications are the two types of online information that citizens in most cases have access to. Ten countries provide citizens access to all the different types of information included in the study. That relatively few countries provide citizens access to all the included types of online health information underscores the importance of continuous emphasis on accessibility and research within this field.

Is Sharing Caring?

The benefits and consequences of patient access to health records.

Is It Time to Expand Our Definition of "Clinical Utility"?

Currently, genetic tests that predict cancer risk or risk of recurrence in patients who have had their cancer treated with curative intent must have proven "clinical utility" to be recommended by the organizations responsible for publishing the standard-of-care guidelines for cancer care.Based on the current definition of clinical utility, most patients are denied testing for cancer-predisposing genes or pathogenic germline variants even though germline testing has been proven as highly accurate in identifying pathogenic germline variant carriers, there are measures recommended to prevent and diagnose early cancers associated with particular PGVs, and disparities in patient access to genetic tests are well described.Similarly, despite dozens of studies demonstrating that detected circulating tumor DNA (ctDNA) after curative intention therapy of different cancer types is a highly accurate biomarker that predicts recurrence, the major organizations that publish guidelines for cancer monitoring after curative intention therapy recommend against using ctDNA assays to detect minimal residual disease and thereby predict recurrence for all solid tumor malignancies.Here, the primary reasons that these genetic tests are considered to lack proven clinical utility and the primary evidence suggesting that a broader definition of clinical utility should be considered are discussed. By expanding the definition of clinical utility, many patients will benefit from the information gained from having these genetic tests.

High-value referrals: learning from challenges and opportunities of the COVID-19 pandemic: concept paper

The referral system is a crucial component of health care systems, aiming to ensure patient access to specialist health care when needed, while maintaining resource efficiency. This concept paper examines various referral types, with a focus on high-value referrals that minimize wasteful activities. Referral is defined as a dynamic process in which a health professional at one level of the health system – having insufficient resources or power to decide on the management of a patient’s clinical condition – seeks the help of another facility at the same or higher level to assist in the care pathway. A series of indicators are proposed to monitor and benchmark different referral systems, considering presential and non-presential referrals (including e-referrals) and classifying referrals by reason. The concept paper outlines the roles of referral system components, current issues, errors in practice, and suggestions for improvement. As part of the research, we conducted interviews with managers in different European health systems (Estonia, Italy, Malta, Spain) to learn about how they leveraged or changed referrals during the pandemic and which changes they would propose. While no single “best” referral system exists, a set of good practices and their driving and inhibiting factors were identified, allowing stakeholders at different levels of the health system to assess how best to collaborate and integrate these practices into service provision. The report lists a series of 80+ potential areas for action to improve referral systems, classified by system components.

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.