Cancer patients’ attitudes and experiences of online access to their electronic medical records: A qualitative study (original) (raw)
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Cancer patients' attitudes and experiences of online medical records
2015
Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is therefore to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching eHealth services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.
BMJ Open, 2021
Objectives Primary 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 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 their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need. Design Focus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach. Setting Focus groups and interviews were conducted in community settings in the UK. Participants Fifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else. Results Participants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated. Conclusions Discussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.
Exploring patients’ perceptions of accessing electronic health records: Innovation in healthcare
Health Informatics Journal
The more widespread implementation of electronic health records has led to new ways of providing access to healthcare information, allowing patients to view their medical notes, test results, medicines and so on. In this article, we explore how patients perceive the possibility to access their electronic health record online and whether this influences patient involvement. The study includes interviews with nine patients and a survey answered by 56 patients. Our results show that patients perceive healthcare information to be more accessible and that electronic health record accessibility improves recall, understanding and patient involvement. However, to achieve the goal of involving patients as active decision-makers in their own treatment, electronic health records need to be fully available and test results, referrals and information on drug interactions need to be offered. As patient access to electronic health records spreads, it is important to gain a deeper understanding of ...
Patients' experiences of accessing their electronic patient records
… Health and Social Care: …, 2008
Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.
British Journal of General Practice
BackgroundNHS England have announced plans to enable all adult patients to have full prospective access to their primary care record by default. Despite this, little is known about the views and experiences of primary care staff regarding patients’ online records access (ORA).AimTo examine the views and experiences of primary care staff regarding patients having online access to their primary care health record, and how this service could be supported and improved.Design and settingA qualitative study of a purposive sample of 30 primary care staff in England.MethodOnline semi-structured interviews with primary care staff were conducted between December 2021 and March 2022. Verbatim transcripts were analysed inductively using thematic analysis.ResultsMost staff agreed with the principle of patient access to online health records but had mixed feelings regarding the potential benefits and drawbacks of applying this in practice. Staff identified opportunities for improving patient enga...
Health Informatics Journal, 2019
Patient accessible electronic health records have been launched in many countries, and generally, health-care professionals have had strong initial concerns related to the areas patient contact, documentation practices and quality of care. Especially, oncology care was discussed in media when launching patient accessible electronic health records in Sweden. However, few studies have investigated clinician-perceived effects several years after the launch. A survey covering these areas, as well as supposed effects for patients, was distributed to oncology health-care professionals 6 years after the launch of patient accessible electronic health records and answered by N = 176. Results show that patient accessible electronic health records have had small effects within the covered areas, and that the area most affected was documentation practices. Very few significant differences could be found between physicians and nurses. A comparison with results from interviews and surveys conduct...
Journal of personalized medicine, 2015
Online access to medical records and linked services, including requesting repeat prescriptions and booking appointments, enables patients to personalize their access to care. However, online access creates opportunities and challenges for both health professionals and their patients, in practices and in research. The challenges for practice are the impact of online services on workload and the quality and safety of health care. Health professionals are concerned about the impact on workload, especially from email or other online enquiry systems, as well as risks to privacy. Patients report how online access provides a convenient means through which to access their health provider and may offer greater satisfaction if they get a timely response from a clinician. Online access and services may also result in unforeseen consequences and may change the nature of the patient-clinician interaction. Research challenges include: (1) Ensuring privacy, including how to control inappropriate ...
BackgroundHealth systems around the world are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care. One example of this policy in England is online patient access to full medical records in primary care. Since April 2019, all NHS England patients have had the right to access their full medical record prospectively, and full record access has been the “default position” since April 2020.AimTo identify and understand the unintended consequences of online patient access their medical record.Design and SettingQualitative interview study in 10 general practices in South West and North West England.MethodSemi-structured individual interviews with 13 patients and 16 general practice staff with experience of patient online access to health records.ResultsOnline access generated unintended consequences that negatively impacted patients’ understanding of their health care, for example patients discovering surprising information or information that w...
Journal of Medical Internet Research, 2021
Background: Patient-accessible electronic health records (PAEHRs) enable patients to access their health records through a secure connection over the internet. Although previous studies of patient experiences with this kind of service have shown that a majority of users are positive toward PAEHRs, little is known about why some patients occasionally or regularly choose not to use them. A better understanding of why patients may choose not to make use of digital health services such as PAEHRs is important for further development and implementation of services aimed at having patients participate in digital health services. Objective: The objective of the study was to explore patients' rationales for not embracing online access to health records. Methods: Qualitative interviews were conducted with 40 patients in a department of internal medicine in a Norwegian hospital in 2018-2019. Interview transcripts were subjected to thematic content analysis. In this paper, we focus on the subject of nonuse of PAEHRs. Results: We identified 8 different rationales that study participants had for not embracing PAEHRs. When patients reflected on why they might not use PAEHRs, they variously explained that they found PAEHRs unnecessary (they did not feel they were useful), impersonal (they preferred oral dialogue with their doctor or nurse over written information), incomprehensible (the records contained medical terminology and explanations that were hard to understand), misery oriented (the records solely focused on disease), fear provoking (reading the records could cause unwanted emotional reactions), energy demanding (making sense of the records added to the work of being a patient), cumbersome (especially among patients who felt they did not have the necessary digital competence), and impoverishing (they were skeptical about the digital transformation of individual and social life). Conclusions: It is often assumed that the barriers to PAEHR use are mostly practical (such as lack of hardware and access to the internet). In this study, we showed that patients may have many other valid reasons for not wanting to adopt this kind of service. The results can help guide how PAEHRs and other digital health services are promoted and presented to patients, and they may suggest that the goal of a given new digital health service should not necessarily be full uptake by all patients. Rather, one should recognize that different patients might prefer and benefit from different kinds of "analog" and digital health services.
2015
Background Online access to medical records by patients can potentially enhance provision of patient-centred care and improve satisfaction. However, online access and services may also prove to be an additional burden for the healthcare provider. Aim To assess the impact of providing patients with access to their general practice electronic health records (EHR) and other EHR-linked online services on the provision, quality, and safety of health care. Design and setting A systematic review was conducted that focused on all studies about online record access and transactional services in primary care. Method Data sources included MEDLINE, Embase, CINAHL, Cochrane Library, EPOC, DARE, King's Fund, Nuffield Health, PsycINFO, OpenGrey (1999-2012). The literature was independently screened against detailed inclusion and exclusion criteria; independent dual data extraction was conducted, the risk of bias (RoB) assessed, and a narrative synthesis of the evidence conducted. Results A total of 176 studies were identified, 17 of which were randomised controlled trials, cohort, or cluster studies. Patients reported improved satisfaction with online access and services compared with standard provision, improved selfcare, and better communication and engagement with clinicians. Safety improvements were patient-led through identifying medication errors and facilitating more use of preventive services. Provision of online record access and services resulted in a moderate increase of e-mail, no change on telephone contact, but there were variable effects on face-to-face contact. However, other tasks were necessary to sustain these services, which impacted on clinician time. There were no reports of harm or breaches in privacy. Conclusion While the RoB scores suggest many of the studies were of low quality, patients using online services reported increased convenience and satisfaction. These services positively impacted on patient safety, although there were variations of record access and use by specific ethnic and socioeconomic groups. Professional concerns about privacy were unrealised and those about workload were only partly so.