What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information.
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ABSTRACT:
SUBMITTER: Gerard M
PROVIDER: S-EPMC5533943 | biostudies-other | 2017 Jul
REPOSITORIES: biostudies-other
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Project description:BackgroundIn a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients.ObjectiveThe aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care.MethodsIn August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations.ResultsA total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes.ConclusionsThis study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.
| S-EPMC8087962 | biostudies-literature
Project description:BACKGROUND:Patient portals are widely adopted in the United States and allow millions of patients access to their electronic health records (EHRs), including their EHR clinical notes. A patient's ability to understand the information in the EHR is dependent on their overall health literacy. Although many tests of health literacy exist, none specifically focuses on EHR note comprehension. OBJECTIVE:The aim of this paper was to develop an instrument to assess patients' EHR note comprehension. METHODS:We identified 6 common diseases or conditions (heart failure, diabetes, cancer, hypertension, chronic obstructive pulmonary disease, and liver failure) and selected 5 representative EHR notes for each disease or condition. One note that did not contain natural language text was removed. Questions were generated from these notes using Sentence Verification Technique and were analyzed using item response theory (IRT) to identify a set of questions that represent a good test of ability for EHR note comprehension. RESULTS:Using Sentence Verification Technique, 154 questions were generated from the 29 EHR notes initially obtained. Of these, 83 were manually selected for inclusion in the Amazon Mechanical Turk crowdsourcing tasks and 55 were ultimately retained following IRT analysis. A follow-up validation with a second Amazon Mechanical Turk task and IRT analysis confirmed that the 55 questions test a latent ability dimension for EHR note comprehension. A short test of 14 items was created along with the 55-item test. CONCLUSIONS:We developed ComprehENotes, an instrument for assessing EHR note comprehension from existing EHR notes, gathered responses using crowdsourcing, and used IRT to analyze those responses, thus resulting in a set of questions to measure EHR note comprehension. Crowdsourced responses from Amazon Mechanical Turk can be used to estimate item parameters and select a subset of items for inclusion in the test set using IRT. The final set of questions is the first test of EHR note comprehension.
| S-EPMC5943623 | biostudies-literature
Project description:IntroductionThough nurses are frontline workers in emergency care, their experiences in emergency centres are seldom researched. This study explored lived experiences of Registered General Nurses working in emergency centres.MethodsThis study employed an exploratory qualitative design. Purposive sampling was used in selecting hospitals and participants for study. Data were collected through semi-structured interviews with 20 Registered General Nurses who worked in emergency centres. Data analysis was performed through content analysis.ResultsDemographic results revealed that only one respondent used knowledge of critical care nursing to practice emergency care in an emergency centre. Four thematic categories emerged after qualitative data analysis: a) Emergency centre as a place of learning and increased confidence for nurses; b) Feelings of joy in emergency centres; c) Social and physical consequences of emergency centres on lives of emergency centre nurses; d) Clients receiving low quality care in emergency centres.DiscussionEmployment of specialist trained emergency staff and formal education of Registered General Nurses in the advanced role of emergency care nursing may be necessary to improve quality of care rendered to clients in emergency centres.
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Project description:ObjectivesTo develop and evaluate the validity of a scale to assess patients' perceived benefits and risks of reading ambulatory visit notes online (open notes).DesignFour studies were used to evaluate the construct validity of a benefits and risks scale. Study 1 refined the items; study 2 evaluated underlying factor structure and identified the items; study 3 evaluated study 2 results in a separate sample; and study 4 examined factorial invariance of the developed scale across educational subsamples.SettingAmbulatory care in three large health systems in the USA.ParticipantsParticipants in three US health systems who responded to one of two online surveys asking about benefits and risks of reading visit notes: a psychometrics survey of primary care patients, and a large general survey of patients across all ambulatory specialties. Sample sizes: n=439 (study 1); n=439 (study 2); n=500 (study 3); and n=250 (study 4).Primary and secondary outcome measuresQuestionnaire items about patients' perceived benefits and risks of reading online visit notes.ResultsStudy 1 resulted in the selection of a 10-point importance response option format over a 4-point agreement scale. Exploratory factor analysis (EFA) in study 2 resulted in two-factor solution: a four-item benefits factor with good reliability (alpha=0.83) and a three-item risks factor with poor reliability (alpha=0.52). The factor structure was confirmed in study 3, and confirmatory factor analysis of benefit items resulted in an excellent fitting model, X2(2)=2.949; confirmatory factor index=0.998; root mean square error of approximation=0.04 (0.00, 0.142); loadings 0.68-0.86; alpha=0.88. Study 4 supported configural, measurement and structural invariance for the benefits scale across high and low-education patient groups.ConclusionsThe findings suggest that the four-item benefits scale has excellent construct validity and preliminary evidence of generalising across different patient populations. Further scale development is needed to understand perceived risks of reading open notes.
| S-EPMC7577023 | biostudies-literature
Project description:Background and objectivesNew payment models resulting from the Advancing American Kidney Health initiative may create incentives for nephrologists to focus less on face-to-face in-center hemodialysis visits. This study aimed to understand whether more frequent nephrology practitioner dialysis visits improved patient experience and could help inform future policy.Design, setting, participants, & measurementsIn a cross-sectional study of patients receiving dialysis from April 1, 2015 through January 31, 2016, we linked patient records from a national kidney failure registry to patient experience data from the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey. We used a multivariable mixed effects linear regression model to examine the association between nephrology practitioner visit frequency and patient-reported experiences with nephrologist care.ResultsAmong 5125 US dialysis facilities, 2981 (58%) had ≥30 In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems surveys completed between April 2015 and January 2016, and 243,324 patients receiving care within these facilities had Medicare Parts A/B coverage. Face-to-face practitioner visits per month were 71% with four or more visits, 17% with two to three visits, 4% with one visit, and 8% with no visits. Each 10% absolute greater proportion of patients seen by their nephrology practitioner(s) four or more times per month was associated with a modestly but statistically significant lower score of patient experience with nephrologist care by -0.3 points (95% confidence interval, -0.5 to -0.1) and no effect on experience with other domains of dialysis care.ConclusionsIn an analysis of patient experiences at the dialysis facility level, frequent nephrology practitioner visits to facilities where patients undergo outpatient hemodialysis were not associated with better patient experiences.
| S-EPMC8425623 | biostudies-literature
Project description:Women who survive severe obstetric complications (SOC) have health and well-being issues even up to 1 year postpartum and have challenges in their quality-of-life (QoL). However, little is known about their predicaments. This study aimed to describe the impact of severe obstetric complications on women's QoL and well-being after surviving severe obstetric complications. Using the WHO standards for near-miss, twelve (12) women who survived severe obstetric complications were recruited between January and March 2019. The study adopted a qualitative approach with an exploratory descriptive design to explore the experiences of women who survived SOC in Southern Ghana. The participants were purposively sampled and were interviewed face to face in their homes and healthcare facility after discharge from the Hospital. Recorded interviews were transcribed and analyzed. Two (2) major themes and nine (9) sub-themes emerged. The findings revealed that women who suffered SOC are unable to perform functional activities, have financial constraints, residual hypertension, signs and symptoms of anaemia, pain, and mostly have difficulty in sleeping due to fear of death when they fall asleep. Anxiety, sadness, and emotional trauma was a common phenomenon. The study findings offer insights and directions on measures to improve the care and QoL of women who have survived severe obstetric complications in Ghana.
| S-EPMC8928636 | biostudies-literature
Project description:Modern healthcare is becoming increasingly technologized, knowledge-intensive, and specialized, which has consequences for communication between patients and practitioners in clinical encounters. Health information is increasingly accessible to patients through online resources. The objective of this paper is to provide an overview of existing studies that address how patients communicate with practitioners about online health information and to identify the key topics raised in these studies. With the concept of eHealth literacy as its point of departure, this paper specifically highlights the eHealth literacy topic of how patients comprehend, appraise and communicate online health information before and during the encounter with the healthcare professionals. In the literature search, we focus on qualitative studies that consider patients' and/or practitioners' reflections on online health information. We searched PUBMED, SCOPUS and Web of Science to capture research from various fields. Sixteen studies were included that met the following criteria: Qualitative study, focus on patient-practitioner communication, eHealth literacy and online information. The results show that the vast majority of studies were based on qualitative interviews, addressing patients' and practitioners' perspectives. Key topics in studies addressing patient perspectives were: reasons for seeking online information; calibrating understanding of online information with the practitioner; and barriers to discussing online information with practitioners. Key topics raised in studies focusing on practitioners were: trust in the patient and the online health information he/she presented as well as strategies to respond to patients who referred to online health information. The review highlights the need for further qualitative studies, preferably observational studies from authentic clinical communication situations, in order to capture how patients and practitioners communicate about online health information.
| S-EPMC9659101 | biostudies-literature
Project description:BackgroundThe primary value relative to health information exchange has been seen in terms of cost savings relative to laboratory and radiology testing, emergency department expenditures, and admissions. However, models are needed to statistically quantify value and sustainability and better understand the dependent and mediating factors that contribute to value and sustainability.ObjectiveThe purpose of this study was to provide a basis for early model development for health information exchange value and sustainability.MethodsA qualitative study was conducted with 21 interviews of eHealth Exchange participants across 10 organizations. Using a grounded theory approach and 3.0 as a relative frequency threshold, 5 main categories and 16 subcategories emerged.ResultsThis study identifies 3 core current perceived value factors and 5 potential perceived value factors-how interviewees predict health information exchanges may evolve as there are more participants. These value factors were used as the foundation for early model development for sustainability of health information exchange.ConclusionsUsing the value factors from the interviews, the study provides the basis for early model development for health information exchange value and sustainability. This basis includes factors from the research: fostering consumer engagement; establishing a provider directory; quantifying use, cost, and clinical outcomes; ensuring data integrity through patient matching; and increasing awareness, usefulness, interoperability, and sustainability of eHealth Exchange.
| S-EPMC5952116 | biostudies-literature
Project description:BackgroundThe privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community.ObjectiveThis study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE.MethodsSemistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses.ResultsWe interviewed 14 participants. Their privacy concerns varied, depending on the participant's privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants' privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits.ConclusionsThis study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes-all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI.
| S-EPMC6881785 | biostudies-literature
Project description:BackgroundPatient-centered care (PCC) offers opportunities for African health systems to improve quality of care. Nonetheless, PCC continually faces implementation challenges. In 2015, Uganda introduced PCC as a concept in their national quality improvement guidelines. In order to investigate whether and how this is implemented in practice, this study aims to identify relevant stakeholders' views on the current quality of primary health care services and their understanding of PCC. This is an important step in understanding how the concept of PCC can be implemented in a resource constrained, sub-Saharan context like Uganda.MethodsThis qualitative study was conducted in Uganda at national, district and facility level, with a focus on three public and three private health centres. Data collection consisted of in-depth interviews (n = 49); focus group discussions (n = 7); and feedback meetings (n = 14) across the four main categories of stakeholders identified: patients/communities, health workers, policy makers and academia. Interviews and discussions explored stakeholder perceptions on the interpersonal aspects of quality primary health care and meanings attached to the concept of PCC. A content analysis of Ugandan policy documents mentioning PCC was also conducted. Thematic content analysis was conducted using NVivo 11 to organize and analyze the data.Findings and conclusionWhile Ugandan stakeholder groups have varying perceptions of PCC, they agree on the following: the need to involve patients in making decisions about their health, the key role of healthcare workers in that endeavor, and the importance of context in designing and implementing solutions. For that purpose, three avenues are recommended: Firstly, fora that include a wide range of stakeholders may offer a powerful opportunity to gain an inclusive vision on PCC in Uganda. Secondly, efforts need to be made to ensure that improved communication and information sharing-important components of PCC-translate to actual shared decision making. Lastly, the Ugandan health system needs to strengthen its engagement of the transformation from a community health worker system to a more comprehensive community health system. Cross-cutting the entire analysis, is the need to address, in a culturally-sensitive way, the many structural barriers in designing and implementing PCC policies. This is essential in ensuring the sustainable and effective implementation of PCC approaches in low- and middle-income contexts.
| S-EPMC6713356 | biostudies-literature