Patients Online Access Research Articles

Communicating blood test results in primary care: a mixed methods systematic review.

Background Test result communication is important for patient-centred care, patient safety and primary care workload. Evidence is needed to ensure that test results are communicated safely and efficiently to patients in primary care. Aim To summarize existing evidence for blood test result communication between primary care providers and their patients and carers. Design and setting Mixed-methods systematic review Methods Medline, Embase, PsycINFO (Ovid); CINAHL (ESCOHost); and the Cochrane Library were searched from 2013 to September 2023. Primary studies of any design that provided information on the communication of blood test results by primary care staff to adult patients and carers were eligible for inclusion. Results There were 71 included studies, including 10 experimental studies and no randomized controlled trials. Study quality was mostly poor and risk of bias was high, partly due to a lack of reported information. Patients want more information about their blood test results, particularly in terms of 'what next', and prefer results to be provided quickly. Electronic methods such as online access or text messages were generally well accepted but not by everyone, and not for all results. Clinicians' opinions were mixed as to whether more information and direct release of test results to patients without clinician input was beneficial or could cause problems, such as increased workload. Conclusions We have identified a range of evidence on patient and clinician preferences, barriers and facilitators to test communication, which is particularly important in the current NHS context of a move towards patient online access.

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

To explore how to help make online consultation notes easier for patient audiences to understand. 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. 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. 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. 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.

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 theUSA. 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.

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

ObjectiveOnline 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. MethodsA 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. ResultsThere 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. ConclusionNo 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 ImplicationRecords need to be easily accessible and comprehensible for patients. Consultation practices should enable patient participation.

Open notes in psychotherapy: An exploratory mixed methods survey of psychotherapy students in Switzerland.

In a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as "open notes"). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes. This study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients' access to psychotherapists' free-text summaries. We administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions. Seventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches. Sharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.

The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study.

Patient online access to medical records is assumed to facilitate patient empowerment and advance patient-centered health care. However, to date, the actual effects of online access to medical records perceived by patients and other outcomes are insufficiently empirically tested. This study aimed to investigate the effects of online access to medical records on patient empowerment, informed decision-making, and the patient-provider relationship perceived by patients. A nationwide, 2-wave, longitudinal survey study was conducted among Dutch adults (N=2402). Linear regression analyses were performed. In model 1, the perceived effects of online access to medical records (measured at T1 [first measurement; July 2021]) on 16 outcomes (measured at T2 [second measurement; January 2022]), which were associated with the use of online access to general practice medical records in previous research, were investigated. Model 2 included sociodemographic factors and patient characteristics as confounders. Users indicated more strongly than nonusers that online access to medical records would increase their participation in health care, improve the relationship with their general practitioner, and support informed decision-making. These results were robust when adjusted for the influence of confounders. Effect sizes were very small, with unstandardized regression coefficients (B) ranging between -0.39 and 0.28. Higher digital and health literacy were associated with higher ratings of almost all effects. Online access to medical records has the potential to empower patients and foster informed decision-making among patients. The effects in this study were small but might grow over time. Other factors, such as the attitude of general practitioners toward online access to medical records, might moderate these effects. The results indicate that the potential benefits of online access to medical records might be unevenly distributed. We suggest future exploration of the conditions under which online access to medical records can improve health care system functioning and efficiency without increasing health inequality.

Patient online access to general practice medical records: A qualitative study on patients' needs and expectations.

Patient online access to medical records is assumed to foster patient empowerment and advance patient-centred healthcare. Since July 2020, patients in the Netherlands have been legally entitled to electronically access their medical record in general practice. Experience from pioneering countries has shown that despite high patient interest, user rates often remain low. How to best support implementation depends on individual needs and expectations of patient populations, which are as yet unknown in the Dutch context. To understand Dutch patients' needs and expectations with regard to online access to their medical record in general practice. Twenty participants completed semi-structured individual interviews via video or telephone call. Transcripts of interviews underwent template analysis combining deductive and inductive coding using Atlas.ti software. Patients' needs and expectations ranged across three overlapping areas: (i) prerequisites for getting online access; (ii) using online access; and (iii) the impact on interaction with healthcare providers. Patients expected benefits from online access such as better overview, empowerment and improved communication with their general practitioner but identified needs regarding technological difficulties, data privacy and complex medical language in their record. The concerns and obstacles participants identified point towards the need for organisational changes in general practice, for example, adjusted documentation practices, and the key role of the general practitioner and staff in promoting and facilitating online access. Implementation strategies addressing needs identified in this study may help to unlock the full potential of online access to achieve desired outcomes of patient involvement and satisfaction.

Unintended consequences of patient online access to health records: a qualitative study in UK primary care.

Health systems are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care worldwide. The NHS Long Term Plan created the right for patients to access 'digital first' primary care by 2023-2024, including online patient access to full medical records. To identify and understand the unintended consequences of online patient access to medical records. Qualitative interview study in 10 general practices in South West and North West England. Semi-structured individual interviews with 13 patients and 16 general practice staff with experience of patient online access to health records. Online access generated unintended consequences that negatively impacted patients' understanding of their health care, with patients finding surprising or difficult to interpret information. Online access impacted GPs' documentation practices, such as when GPs pre-emptively attempted to minimise potential misunderstandings to aid patient understanding of their health care. In other cases, this negatively impacted the quality of the records and patient safety when GPs avoided documenting speculations or concerns. Contrary to assumptions that workload would be reduced, online access introduced extra work, such as managing and monitoring access, and taking measures to prevent possible harm to patients. The unintended consequences described by both staff and patients show that, to achieve the intended consequences set out in NHS policy, additional work is necessary to prepare records for sharing and to prepare patients about what to expect. It is crucial that practices are adequately supported and resourced to manage the unintended consequences of online access, now that it is the default position. A table of potential unintended consequences and mitigation measures is provided to aid practice managers and clinicians implementing online access.

Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review.

BackgroundAs patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access.ObjectiveThis paper presents the protocol for a scoping review of different stakeholders’ (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents.MethodsThis scoping review will be conducted according to the Arksey and O’Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents’, children’s, and adolescents’ online access to the electronic health records of children and adolescents? Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review.ResultsThe results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal.ConclusionsThis is, to our knowledge, the first study to map the literature on the use and experiences of parents’ and adolescents’ online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records.International Registered Report Identifier (IRRID)DERR1-10.2196/36158

Readiness for five digital technologies in general practice: perceptions of staff in one part of southern England

BackgroundOur aim was to understand how digital readiness within general practice varies between different technologies and to identify how demographic, workplace and external factors affect this. The technologies considered include...

A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

ObjectivesPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access...

Impact of Patient Access to Online VA Notes on Healthcare Utilization and Clinician Documentation: a Retrospective Cohort Study.

In an effort to foster patient engagement, some healthcare systems provide their patients with open notes, enabling them to access their clinical notes online. In January 2013, the Veterans Health Administration (VA) implemented online access to clinical notes ("VA Notes") through the Blue Button feature of its patient portal. To measure the association of online patient access to clinical notes with changes in healthcare utilization and clinician documentation behaviors. A retrospective cohort study. Patients accessing My HealtheVet (MHV), the VA's online patient portal, between July 2011 and January 2015. Use of healthcare services (primary care clinic visits and online electronic secure messaging), and characteristics of physician clinical documentation (readability of notes). Among 882,575 unique portal users, those who accessed clinical notes (16.2%; N = 122,972) were younger, more racially homogenous (white), and less likely to be financially vulnerable. Compared with non-users, Notes users more frequently used the secure messaging feature on the portal (mean of 2.6 messages (SD 7.0) v. 0.87 messages (SD 3.3) in January-July 2013), but their higher use of secure messaging began prior to VA Notes implementation, and thus was not temporally related to the implementation. When comparing clinic visit rates pre- and post-implementation, Notes users had a small but significant increase in rate of 0.36 primary care clinic visits (2012 v. 2013) compared to portal users who did not view their Notes (p = 0.01). At baseline, the mean reading ease of primary care clinical notes was 53.8 (SD 10.1) and did not improve after implementation of VA Notes. VA Notes users were different than patients with portal access who did not view their notes online, and they had higher rates of healthcare service use prior to and after VA Notes implementation. Opportunities exist to improve clinical note access and readability.

Investigation of users' experiences for online access to their electronic health records in Japan.

The solution of sharing electronic health records (EHR) with patients has the potential to improve patients' understanding and remembering of their health information. We call this solution the patient open-EHR. In Japan, this solution is not yet widespread, and experiences of actual users are not known. Our aim is to explore the needs and satisfaction of patients who are actually using one patient open-EHR system in Japan that allows registered patients online access to part of their EHR. A cross-sectional study was done using an online questionnaire. Patients registered with our patient open-EHR system were invited to participate by posting an invitation message on the system login page and sending them invitation emails. We investigated their needs regarding the system and their views regarding the system's ability to improve their understanding, remembering, and other perspectives. Answers from 95 patients, collected between August 10 and October 20, 2019 were analyzed. The need to further understand and remember the information received from the doctor was among the top four reasons behind using the system. However, only 48% of patients agreed that the system improved their remembering and 68% agreed that it improved their understanding. Thirty-seven percent of respondents expressed dissatisfaction with access to only blood test results and prescriptions. Despite this dissatisfaction, respondents were positive about the future of the system. Hospitals need to recognize the needs of patients and to consider them when providing patient open-EHR service. The EHR has potential not only for hospitals but also for patients.

What do patients want? A qualitative exploration of patients' needs and expectations regarding online access to their primary care record.

Primary care records have traditionally served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must promote and offer registered patients online access to their primary care record and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients' needs and expectations regarding online access. To explore patients' views about accessing online primary care records and to find out how patients would like to interact with their records and what support they may need. Interviews and focus groups with a sample of 50 patients from a variety of socio-demographic backgrounds who were either; eligible for the NHS Health Check; had multimorbidities or were carers. Thematic analysis of data identified major themes impacting upon patients' wishes and needs as well as highlighting population-specific issues. Participants highlighted a wide range of views about the benefits and drawbacks of accessing their records online. The majority of participants indicated that they would be more likely to access their online primary care record if improvements were made to the design, reliability and functionality of existing online record services. Carers found accessing online records particularly useful. Consultation with patients and carers about their experiences of accessing online records; support needs and preferred functions can provide useful insights to inform the future design of online record services.

Healthcare transformations: implications for patients.

Our healthcare systems are currently going through vast changes; possibly some of the most significant transformations since the Enlightenment. The medical establishment, the technology industry, and patients are integrating in a manner not previously seen. The technological changes in patient online access to Electronic Patient Health Records (EPHRs) is potentially more convenient for patients, empowers and enables them to take better control of their health and health behaviour, helps them to navigate a complex system, and may make services more efficient and cost-effective. But there is also the possibility for unintended harm, particularly related to privacy and confidentiality, and patients with complex needs or potential vulnerabilities could potentially experience significant impacts to their health care and relationship with their providers. These changes bring exciting new possibilities. It is hoped that patients are likely to experience a greater sense of self-autonomy and equal footing in their health care. Instead of working in …

A Theoretical Twist on the Transparency of Open Notes: Qualitative Analysis of Health Care Professionals' Free-Text Answers.

BackgroundThe New Public Management movement strove for transparency so that policy makers and citizens could gain insight into the work and performance of health care. As the use of the electronic health record (EHR) started to diffuse, a foundation was laid for enhanced transparency within and between health care organizations. Now we appear to be experiencing a new kind of transparency in the health care sector. Many health care providers offer their patients online access to their EHRs (here referred to as Open Notes). The Open Notes system enables and strives for transparency between the health care organization and the patient. Hence, this study investigates health care professional (HCP) perceptions of Open Notes and deepens the understanding of the transparency that Open Notes implies.ObjectiveBased on two survey studies of HCP perceptions of Open Notes, this paper aims to deepen the academic writing on the type of transparency that is connected to Open Notes.MethodsHCPs in adult psychiatry in Region Skåne, Sweden, were surveyed before and after implementation of Open Notes. The empirical material presented consists of 1554 free-text answers from two Web surveys. A qualitative content analysis was performed.ResultsThe theoretically informed analysis pivots around the following factors connected to transparency: effectiveness; trust; accountability; autonomy and control; confidentiality, privacy, and anonymity; fairness; and legitimacy. The results show that free-text answers can be sorted under these factors as trade-offs with transparency. According to HCPs, trade-offs affect their work, their relationship with patients, and not least, their work tool, the EHR. However, since many HCPs also state that they have not met many patients, and in some cases none, who have read their EHRs, these effects seem to be more connected to the possibility (or threat) of transparency than to the actual effectuated transparency.ConclusionsThe implementation (or reform) of Open Notes is policy driven while demanding real-time transparency on behalf of citizens/patients and not the authorities, which makes this particular form of transparency quite unique and interesting. We have chosen to call it governed individual real-time transparency. The effects of Open Notes may vary between different medical specialties relative to their sensitivity to both total and real-time transparency. When HCPs react by changing their ways of writing notes, Open Notes can affect the efficiency of the work of HCPs and the service itself in a negative manner. HCP reactions are aimed primarily at protecting patients and their relatives as well as their own relationship with the patients and secondly at protecting themselves. Thus, governed individual real-time transparency that provides full transparency of an actual practice in health care may have the intended positive effects but can also result in negative trade-offs between transparency and efficiency of the actual practice. This may imply that full transparency is not always most desirable but that other options can be considered on a scale between none and full transparency.

EPS5.02 The effect of providing patient online access to Electronic Health care Records (EHR) in cystic fibrosis

ePS5.02 The effect of providing patient online access to Electronic Health care Records (EHR) in cystic fibrosis

Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform - a case study

BackgroundPatients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients’ health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform.MethodsA single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios.ResultsBased on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals.ConclusionThe national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met.

Impacts of a Web-Based Course on Mental Health Clinicians' Attitudes and Communication Behaviors Related to Use of OpenNotes.

The OpenNotes initiative encourages health care systems to provide patients online access to clinical notes. Some individuals have expressed concerns about use of OpenNotes in mental health care. This study evaluated changes in mental health clinicians' attitudes and communications with patients after participation in a Web-based course designed to reduce potential for unintended consequences and enhance likelihood of positive outcomes of OpenNotes. All 251 mental health clinicians (physicians, nurse practitioners, psychologists, and social workers) of a large U.S. Department of Veterans Affairs facility were invited to participate. Clinicians completed surveys at baseline and 3 months after course participation. Ten items were examined that addressed clinicians' concerns and communication behaviors with patients. Mixed-effects models with repeated measures were used to compare pre-post data. Of the 251 clinicians, 141 (56%) completed baseline surveys, and 113 (80%) completed baseline and postcourse surveys. Of the 141 clinicians, 63% were female, 46% were social workers, 34% were psychologists, 16% were psychiatrists, and 4% were nurse practitioners. In final adjusted models, pre-post item scores indicated significant increases in clinicians' ability to communicate with and educate patients (p<.01) and in the frequency with which clinicians educated patients about OpenNotes access (p<.001), advised patients to access and read notes (p<.01), and asked patients about questions or concerns they have with notes (p=.04). There was also a significant reduction in clinicians' worry about negative consequences (p=.05). A Web-based course for mental health clinicians on use of OpenNotes resulted in self-reported improvements in some concerns and in aspects of patient-clinician communication.

Providing mental health care in the context of online mental health notes: advice from patients and mental health clinicians

Background: The OpenNotes initiative provides patients online access to their clinical notes. Mental health clinicians in the Veterans Health Administration report a need for guidance on how to provide care, write notes, and discuss them in the context of OpenNotes.Aim: To provide mental health clinicians recommendations identified by patients and clinicians that help them effectively practice in the context of OpenNotes.Method: Twenty-eight mental health clinicians and 28 patients in mental health care participated in semi-structured interviews about their experiences and perceptions with OpenNotes. A rapid review approach was used to analyze transcripts.Results: Analysis of interviews identified three domains of advice for mental health clinicians: writing notes that maintain the therapeutic relationship, communicating with patients about their notes and utilizing clinical notes as a patient resource to enhance care. Specific recommendations are provided.Conclusion: Findings provide mental health clinicians with guidance from service users and clinicians on how to leverage clinical notes to maintain – and potentially enhance –therapeutic relationships in a healthcare system in which patients are able to read their mental health notes online.