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A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

ABSTRACT: BACKGROUND:Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of the issues involved in such a change in process. METHODS:This study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed. RESULTS:3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients - almost exclusively verbally - is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated. CONCLUSIONS:The review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated.

SUBMITTER: D'Costa SN

PROVIDER: S-EPMC7053049 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

D'Costa Stephanie N SN Kuhn Isla L IL Fritz Zoë Z

BMC medical ethics 20200302 1

<h4>Background</h4>Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical ana ...[more]

PMID: 32122332

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Project description:PURPOSE:To identify opportunities for improving patient-centered communication about diagnostic imaging tests that involve the use of radiation in a cancer care setting. MATERIALS AND METHODS:Institutional review board approval and informed consent were obtained for this HIPAA-compliant study. Patient knowledge, information sources, and communication preferences were assessed in six focus groups during 2012. The groups consisted of patients undergoing treatment for metastatic colorectal carcinoma, women treated within the past 6 months for early-stage breast carcinoma, men undergoing surveillance after testicular cancer treatment, parents of patients treated for stage I-III neuroblastoma, patients in a thoracic oncology survivorship program, and participants in a lung cancer screening program. A multidisciplinary research team performed thematic content analysis of focus group transcripts. High-level findings were summarized during consensus conferences. RESULTS:Although they were aware of the long-term risk of cancer from exposure to ionizing radiation, most participants reported that their health care provider did not initiate discussion about benefits and risks of radiation from imaging tests. Most patients obtained information by means of self-directed internet searches. Participants expressed gratitude for tests ("That CT saved my daughter's life," "I'd rather have the radiation dosage than being opened up"), yet they expressed concern about having to initiate discussions ("If you don't ask, nobody is going to tell you anything") and the desire to be offered information concerning the rationale for ordering specific imaging examinations, intervals for follow-up imaging, and testing alternatives. Participants believed that such information should be available routinely and that conversation with their personal physician or endorsed, readily available reference materials were ideal methods for information exchange. Understanding imaging radiation risks and active participation in decision making about imaging were especially important to cancer survivors. CONCLUSION:A substantial gap exists between patient expectations and current practices for providing information about medical imaging tests that involve the use of radiation.

Project description:BackgroundOnline access to computerized medical records has the potential to improve convenience, satisfaction, and care for patients, and to facilitate more efficient organization and delivery of care.ObjectiveThe objective of this review is to explore the use and impact of having online access to computerized medical records and services for patients with type 2 diabetes mellitus in primary care.MethodsMultiple international databases including Medline, Embase, CINAHL, PsycINFO and the Cochrane Library were searched between 2004 and 2016. No limitations were placed on study design, though we applied detailed inclusion and exclusion criteria to each study. Thematic analysis was used to synthesize the evidence. The Mixed Methods Appraisal Toolkit was used to appraise study quality.ResultsA search identified 917 studies, of which 28 were included. Five themes were identified: (1) disparities in uptake by age, gender, ethnicity, educational attainment, and number of comorbidities, with young men in full-time employment using these services most; (2) improved health outcomes: glycemic control was improved, but blood pressure results were mixed; (3) self-management support from improved self-care and shared management occurred especially soon after diagnosis and when complications emerged. There was a generally positive effect on physician-patient relationships; (4) accessibility: patients valued more convenient access when online access to computerized medical records and services work; and (5) technical challenges, barriers to use, and system features that impacted patient and physician use. The Mixed Methods Appraisal Toolkit rated 3 studies as 100%, 19 studies as 75%, 4 studies as 50%, and 1 study scored only 25%.ConclusionsPatients valued online access to computerized medical records and services, although in its current state of development it may increase disparities. Online access to computerized medical records appears to be safe and is associated with improved glycemic control, but there was a lack of rigorous evidence in terms of positive health outcomes for other complications, such as blood pressure. Patients remain concerned about how these systems work, the rules, and timeliness of using these systems.

Project description:BACKGROUND:In many countries, medical interventions are reimbursed on the basis of recommendations made by advisory boards and committees that apply multiple criteria in their assessment procedures. Given the diversity of these criteria, it is difficult to find common ground to determine what information is required for setting priorities. OBJECTIVE:To investigate whether society and patients share the same interests and views concerning healthcare priorities. METHODS:We applied a framework of discrete choice models in which respondents were presented with judgmental tasks to elicit their preferences. They were asked to choose between two hypothetical scenarios of patients receiving a new treatment. The scenarios graphically presented treatment outcomes and patient characteristics. Responses were collected through an online survey administered among respondents from the general population (N = 1,253) and patients (N = 1,389) and were analyzed using conditional logit and mixed logit models. RESULTS:The respondents' preferences regarding new medical treatments revealed that they attached the most relative importance to additional survival years, age at treatment, initial health condition, and the cause of disease. Minor differences in the relative importance assigned to three criteria: age at treatment, initial health, and cause of disease were found between the general population and patient samples. Health scenarios in which patients had higher initial health-related quality of life (i.e., a lower burden of disease) were favored over those in which patients' initial health-related quality of life was lower. CONCLUSIONS:Overall, respondents within the general population expressed preferences that were similar to those of the patients. Therefore, priority-setting studies that are based on the perspectives of the general population may be useful for informing decisions on reimbursement and other types of priority-setting processes in health care. Incorporating the preferences of the general population may simultaneously increase public acceptance of these decisions.

Project description:BackgroundAccess to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK.MethodsContent and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrollment and usage were extracted from the webserver.ResultsBy mid 2011 over 17,000 patients from 47 of the 75 renal units in the UK had registered. Users had a wide age range (<10 to >90 yrs) but were younger and had more years of education than non-users. They were enthusiastic about the concept, found it easy to use, and 80% felt it gave them a better understanding of their disease. The most common reason for not enrolling was being unaware of the system. A minority of patients had security concerns, and these were reduced after enrolling. Staff responses were also strongly positive. They reported that it aided patient concordance and disease management, and increased the quality of consultations with a neutral effect on consultation length. Neither patient nor staff responses suggested that RPV led to an overall increase in patient anxiety or to an increased burden on renal units beyond the time required to enroll each patient.ConclusionsPatient Internet access to secondary care records concerning a complex chronic disease is feasible and popular, providing an increased sense of empowerment and understanding, with no serious identified negative consequences. Security concerns were present but rarely prevented participation. These are powerful reasons to make this type of access more widely available.

Project description:Objective: Contemporary healthcare requires physicians to have well developed ethical judgment skills in addition to excellent clinical skills. However, no consensus has been reached on how to best teach ethical judgment skills during medical training. Previous studies revealed inconclusive results and applied varying theoretical frameworks. To date, the students' perspectives on their development in ethical judgment has received less attention. Better insights in the learners' experiences can help to improve educational interventions in medical ethics. Methods: A vignette featuring a challenging case with opposing views between a patient's parents and a physician followed by a questionnaire was presented to a cohort of medical students at a German medical school at three points in time during their medical training (Year 1, 2 and 5). The questionnaire included closed and open-ended questions addressing the participant's preferred, hypothetical actions, their reasoning as well as the resources informing their reasoning. Content analysis was used for qualitative data; frequencies and percentages were used to describe quantitative findings. Results: The response rate remained stable (28%) over the study period. Participants' responses changed overtime. Accepting parents' autonomy in the decision-making process was the majority standpoint of students in year 1 and 2 and became less often cited in year 5 (Year 1/2/5: 68/67/48%). On the contrary, not readily following the parents' decision for medical reasons was a minority standpoint in year 1 and became more prevalent over time (year 1/2/5: 12/17/42%). Judgments were only partly based on ethics training. Instead, participants drew on experiences from their clinical clerkships and their personal lives. Throughout the study, participants did not feel well-prepared to make a judgment in the case (Average 2.7 on a Likert-Scale; 1=very well prepared, 4=very poor). Conclusions: Over the course of their medical training, the participants seemed to increasingly frame the presented vignette as a medical problem. To optimize the development of ethical judgment teaching of ethics should be more integrated in clinical teaching. In addition to the analysis of rare and extreme cases, teaching ethics should also expand on challenges students and junior doctors commonly encounter themselves to promote ethical sensitivity and confidence in students.

Project description:BackgroundEHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.MethodsWe conducted 15 focus groups (n =?110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.ResultsFor initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.ConclusionsExternal validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.

Dataset Information

A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

Publications

A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

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