Open Oncology Notes: A Qualitative Study of Oncology Patients’ Experiences Reading Their Cancer Care Notes

Kayastha, Neha; Pollak, Kathryn I.; LeBlanc, Thomas W.

doi:10.1200/jop.2017.028605

Cited by 24 publications

(20 citation statements)

References 17 publications

(13 reference statements)

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“…Similar emotional reactions were described in a focus group study, where two patients “thought that seeing their diagnoses in writing would be stressful enough to ‘…put me over the top.’” 30 An interview study focusing on accessing test results online also found that patients often experienced negative emotions when reading abnormal test results, and sometimes this occurred even with normal test results 47 . Lastly, a minority of oncology patients reading their notes online described this experience as emotionally difficult: “Some described a sense of sadness when reading about their cancer, even wishing that the electronic medical record would restrict their access to notes” 48 . One large‐scale survey study finds very few patients were left worried or confused after reading visit notes online 49 .…”

Section: Discussionmentioning

confidence: 99%

Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study

Bernaerdt

Moerenhout

Devisch

2020

Evaluation Clinical Practice

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Background The collection, storage and exchange of medical information are becoming increasingly complex. More parties are involved in this process, and the data are expected to serve many different purposes beside patient care. This raises several ethical questions regarding privacy, data ownership, security and confidentiality. It is vital to consider patients' moral attitudes and preferences in this digital information exchange. The voice of vulnerable patients is rarely heard in research addressing these questions. This study aims to address this void. Method Fourteen vulnerable patients without prior experience with patient portal systems were interviewed for this study. First, participants were introduced to the portal and given time to read their personal medical data. Afterwards, semi‐structured interviews were conducted and analysed thematically to explore participants' first experience with the portal and their views on sharing medical information with care providers and other parties. Results Data analysis resulted in four themes: barriers to and benefits of portal access, emotional responses to reading medical information, diverging views on sharing information with third parties and balancing granular control and the best possible care. First, participants appreciated access to their health information in the portal despite experiencing obstacles. Second, reading medical information online could evoke emotional responses. Third, patients were generally unaware of the meaning and value of medical data to third parties, resulting in inconsistent views on data sharing. Finally, although patients generally supported granular control, they were willing to give up on their autonomy if that would ensure them to receive the best possible care. Conclusions Patient portal design should take into consideration the obstacles that discourage vulnerable patients' access and hamper meaningful use. There is a need for more transparency on secondary use of medical data by third parties. Patients should be better informed about the potential consequences of sharing data with them.

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Section: Discussionmentioning

confidence: 99%

Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study

Bernaerdt

Moerenhout

Devisch

2020

Evaluation Clinical Practice

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“…Unlike our patients, patients in this study also believed it would help them to take their medications (77%) and rated their own anticipated ability to understand the notes as 7.5 out of 10. Studies conducted after the implementation of shared notes have found that the perceived benefits and concerns were similar to those found before implementation in both clinicians [20][21][22][23] and patients [6,7,9,12,[24][25][26][27]. However, all outcome measures in these studies were assessed subjectively, with the exception of Ross and Lin [21], who found that the number of messages from the patient to the doctor increased by 31% after the implementation of shared notes.…”

Section: Comparison With Previous Workmentioning

confidence: 99%

Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study

Janssen¹,

Venema-Taat²,

Medlock³

2021

J Med Internet Res

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Background The past few years have seen an increase in interest in sharing visit notes with patients. Sharing visit notes with patients is also known as “open notes.” Shared notes are seen as beneficial for patient empowerment and communication, but concerns have also been raised about potential negative effects. Understanding barriers is essential to successful organizational change, but most published studies on the topic come from countries where shared notes are incentivized or legally required. Objective We aim to gather opinions about sharing outpatient clinic visit notes from patients and hospital physicians in the Netherlands, where there is currently no policy or incentive plan for shared visit notes. Methods This multimethodological study was conducted in an academic and a nonacademic hospital in the Netherlands. We conducted a survey of patients and doctors in March-April 2019. In addition to the survey, we conducted think-aloud interviews to gather more insight into the reasons behind participants’ answers. We surveyed 350 physicians and 99 patients, and think-aloud interviews were conducted with an additional 13 physicians and 6 patients. Results Most patients (81/98, 77%) were interested in viewing their visit notes, whereas most physicians (262/345, 75.9%) were opposed to allowing patients to view their visit notes. Most patients (54/90, 60%) expected the notes to be written in layman’s terms, but most physicians (193/321, 60.1%) did not want to change their writing style to make it more understandable for patients. Doctors raised concerns that reading the note would make patients feel confused and anxious, that the patient would not understand the note, and that shared notes would result in more documentation time or losing a way to communicate with colleagues. Interviews also revealed concerns about documenting sensitive topics such as suspected abuse and unlikely but worrisome differential diagnoses. Physicians also raised concerns that documenting worrisome thoughts elsewhere in the record would result in fragmentation of the patient record. Patients were uncertain if they would understand the notes (46/90, 51%) and, in interviews, raised questions about security and privacy. Physicians did anticipate some benefits, such as the patients remembering the visit better, shared decision-making, and keeping patients informed, but 24% (84/350) indicated that they saw no benefit. Patients anticipated that they would remember the visit better, feel more in control, and better understand their health. Conclusions Dutch patients are interested in shared visit notes, but physicians have many concerns that should be addressed if shared notes are pursued. Physicians’ concerns should be addressed before shared notes are implemented. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine whether the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized.

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“…Access to medical notes (usually referred to as OpenNotes in the literature) through patient portals was another component of several studies. A study found that almost all patients described enhanced comprehension about their disease and care because of access to clinicians' notes, as the notes refreshed their memory and clarified their understanding of visits [74].…”

Section: Medical Notesmentioning

confidence: 99%

“…Patients reported that the medical notes eased their uncertainty, relieved anxiety, and facilitated control [74]. Denneson et al [75] found that reading OpenNotes helped 49% of patients have feelings ranging from very to extremely in control of their health care.…”

Section: Medical Notesmentioning

confidence: 99%

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Capturing the Impact of Patient Portals Based on the Quadruple Aim and Benefits Evaluation Frameworks: Scoping Review (Preprint)

Avdagovska¹,

Menon²,

Stafinski³

2020

Preprint

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BACKGROUND Electronic patient portals are secure websites tied to an institutional electronic health record system from which patients can view their medical information. These types of records are populated with a person’s lifetime health history. Despite the continuing extensive research in this area, measuring patient portal impact continues to be a convoluted process. OBJECTIVE To explore what is known about patient portal evaluations and provide recommendations for future endeavours. The focus was on mapping what measures are used to assess the impact of patient portals on the four specific dimensions (patient, population, healthcare workforce, and health system perspectives) of the Quadruple Aim Framework, and what components from the Benefits Evaluation Framework were most commonly evaluated to measure impact. METHODS A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search using the OVID platform, the following databases were searched: Ovid MEDLINE® ALL, including Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Embase, and PsycINFO. CINAHL on the Ebsco platform and Web of Science were also searched for studies published between 2015 and June 2020. A systematic grey literature search was conducted using the Google search engine in Edmonton, Alberta, Canada between February 13 and February 25, 2020. A data extraction form was developed and reviewed to categorize the literature into themes and areas of interest, which varied by study type. Two frameworks for analysis were incorporated, the Quadruple Aim and the Canada Health Infoway’s Benefits Evaluation Frameworks. Extracted data were tabulated based on a coding template developed to categorize the literature into themes and areas of interest, which varied by study type and QA perspective. Furthermore, the evaluated patient portal functions were mapped onto the Benefits Evaluation Framework. A descriptive, analytical approach was used to summarize the outcomes of the studies. In addition, a list of the various terms/outcomes/variables that were used to describe ‘impact’ was compiled. RESULTS In total, 96 studies were included for data extraction. The studies were categorized based on the Quadruple Aim dimensions, with strict adherence to the definitions for each dimension(1,2). From the patient perspective, we identified that most evaluations focused on benefits and barriers to access, access to test results, medication adherence, condition management, medical notes, and secure messaging. From the population perspective, the evaluations focused on increase in population outreach, decrease in disparities related to access of care services, and improvement in quality of care. From the healthcare workforce perspective, the evaluations focused on impact of patients accessing medical records, impact on workflow, impact of bi-directional secure messaging, and virtual care. From the health system perspective, the evaluations focused on decrease in no-show appointments, impact on office visits and telephone calls, impact on admission and readmission rates and emergency department visits, and impact on healthcare utilization. Altogether, 77 peer-reviewed studies were mapped on the expanded version of the BE Framework. The mapping was done by sub-dimension to create a more precise representation about the areas that are currently explored when studying patient portals. Most of the studies evaluated more than one sub-dimension. CONCLUSIONS Despite the extensive and existing research in the area of patient portals, the evidence from this scoping review suggests that impact research is available, but it lacks multidimensionality. The Quadruple Aim and the Benefits Evaluation Frameworks provided guidance in identifying the gaps in the current literature by providing a way to show how impact was assessed. This review highlights the need to appropriately plan how impact will be assessed and how the findings will be translated into effective adaptations. If the how and what are not properly planned, the generalizability of patient portals studies will continue to elude researchers and implementation teams.

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Open Oncology Notes: A Qualitative Study of Oncology Patients’ Experiences Reading Their Cancer Care Notes

Cited by 24 publications

References 17 publications

Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study

Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study

Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study

Capturing the Impact of Patient Portals Based on the Quadruple Aim and Benefits Evaluation Frameworks: Scoping Review (Preprint)

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