Cancer patients' attitudes and experiences of online medical records (original) (raw)
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Health Informatics Journal, 2016
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 article is 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 e-Health 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.
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 ...
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 ...
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.
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.
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 the American Medical Informatics Association, 2004
Patient access to their electronic health care record (EHR) and Web-based communication between patients and providers can potentially improve the quality of health care, but little is known about patients' attitudes toward this combined electronic access. The objective of our study was to evaluate patients' values and perceptions regarding Web-based communication with their primary care providers in the context of access to their electronic health care record. Methods: We conducted an online survey of 4,282 members of the Geisinger Health System who are registered users of an application (MyChart) that allows patients to communicate electronically with their providers and view selected portions of their EHR. To supplement the survey, we also conducted focus groups with 25 patients who were using the system and conducted one-on-one interviews with ten primary care clinicians. We collected and analyzed data on user satisfaction, ease of use, communication preferences, and the completeness and accuracy of the patient EHR. Results: A total of 4,282 registered patient EHR users were invited to participate in the survey; 1,421 users (33%) completed the survey, 60% of them female. The age distribution of users was as follows: 18 to 30 (5%), 31 to 45 (24%), 46 to 64 (54%), 65 and older (16%). Using a continuous scale from 1 to 100, the majority of users indicated that the system was easy to use (mean scores ranged from 78 to 85) and that their medical record information was complete, accurate, and understandable (mean scores ranged from 65 to 85). Only a minority of users was concerned about the confidentiality of their information or about seeing abnormal test results after receiving only an explanatory electronic message from their provider. Patients preferred e-mail communication for some interactions (e.g., requesting prescription renewals, obtaining general medical information), whereas they preferred in-person communication for others (e.g., getting treatment instructions). Telephone or written communication was never their preferred communication channel. In contrast, physicians were more likely to prefer telephone communication and less likely to prefer e-mail communication. Conclusion: Patients' attitudes about the use of Web messaging and online access to their EHR were mostly positive. Patients were satisfied that their medical information was complete and accurate. A minority of patients was mildly concerned about the confidentiality and privacy of their information and about learning of abnormal test results electronically. Clinicians were less positive about using electronic communication than their patients. Patients and clinicians differed substantially regarding their preferred means of communication for different types of interactions.
Cancer patients´ information seeking behaviour related to online electronic healthcare records
2022
Patients' online access to their EHR together with the rapid proliferation of medical information on the Internet has changed the way patients use the information to learn about their health. It is well documented that patients often turn to the Internet to find information about their health and care. However, little is known about patients´ information seeking behaviour when using online EHRs. By using information horizons as an analytical tool this paper aims to investigate the information behaviour of cancer patients who have chosen to view their EHRs (readers) and to those who have not made that option (non-readers). Thirty interviews were conducted with patients. Based on information horizons, it seems that non-reading is associated with living in a narrower information world in comparison to readers. The findings do not suggest that the smallness would be a result of an active avoidance of information, or that it would be counterproductive for the patients.
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...