Abstract:
BACKGROUND:Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR). METHODS:A descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed. RESULTS:Two main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights' - consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR. CONCLUSIONS:In order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be enhanced. TRIAL REGISTRATION:ISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).
journal_name
BMC Med Inform Decis Makjournal_title
BMC medical informatics and decision makingauthors
Weis A,Pohlmann S,Poss-Doering R,Strauss B,Ullrich C,Hofmann H,Ose D,Winkler EC,Szecsenyi J,Wensing Mdoi
10.1186/s12911-020-01172-4subject
Has Abstractpub_date
2020-07-13 00:00:00pages
158issue
1issn
1472-6947pii
10.1186/s12911-020-01172-4journal_volume
20pub_type
杂志文章abstract:BACKGROUND:We aimed to develop a real-time nosocomial infection surveillance system (RT-NISS) to monitor all nosocomial infections (NIs) and outbreaks in a Chinese comprehensive hospital to better prevent and control NIs. METHODS:The screening algorithm used in RT-NISS included microbiological reports, antibiotic usag...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-14-9
更新日期:2014-01-29 00:00:00
abstract:BACKGROUND:Since the beginning of 2007, the National Health Research Institutes has been promoting the dissemination of evidence-based medicine (EBM). The current study examined longitudinal trends of behaviors in how hospital-based physicians and nurses have searched for medical information during the spread of EBM. ...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-13-4
更新日期:2013-01-07 00:00:00
abstract:BACKGROUND:Recently, claim-data-based comorbidity-adjusted methods such as the Charlson index and the Elixhauser comorbidity measures have been widely used among researchers. At the same time, there have been an increasing number of attempts to improve the predictability of comorbidity-adjusted models. We tried to impr...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-13-128
更新日期:2013-11-20 00:00:00
abstract:BACKGROUND:A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual le...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-12-73
更新日期:2012-07-18 00:00:00
abstract:BACKGROUND:The Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by t...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-020-01288-7
更新日期:2020-12-15 00:00:00
abstract:BACKGROUND:Identifying subtypes of complex diseases such as cancer is the very first step toward developing highly customized therapeutics on such diseases, as their origins significantly vary even with similar physiological characteristics. There have been many studies to recognize subtypes of various cancer based on ...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-016-0295-2
更新日期:2016-07-18 00:00:00
abstract:BACKGROUND:Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. This systematic review aims to identify and synthesise the qualitative literature on barriers and facilitators to engagement and recruitment to DHI...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,评审
doi:10.1186/s12911-016-0359-3
更新日期:2016-09-15 00:00:00
abstract:BACKGROUND:Decision aids have been overall successful in improving the quality of health decision making. However, it is unclear whether the impact of the results of using decision aids also apply to older people (aged 65+). We sought to systematically review randomized controlled trials (RCTs) and clinical controlled ...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,meta分析,评审
doi:10.1186/s12911-016-0281-8
更新日期:2016-04-21 00:00:00
abstract:BACKGROUND:Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of he...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-018-0697-4
更新日期:2018-11-20 00:00:00
abstract:BACKGROUND:Simulation applications on operations management in hospitals are frequently published and claim to support decision-making on operations management subjects. However, the reported implementation rates of recommendations are low and the actual impact of the changes recommended by the modeler has hardly been ...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,评审
doi:10.1186/1472-6947-12-18
更新日期:2012-03-14 00:00:00
abstract:BACKGROUND:The ability to report complete, accurate and timely data by HIV care providers and other entities is a key aspect in monitoring trends in HIV prevention, treatment and care, hence contributing to its eradication. In many low-middle-income-countries (LMICs), aggregate HIV data reporting is done through the Di...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-020-01367-9
更新日期:2021-01-06 00:00:00
abstract:BACKGROUND:Prior studies have demonstrated that cardiorespiratory fitness (CRF) is a strong marker of cardiovascular health. Machine learning (ML) can enhance the prediction of outcomes through classification techniques that classify the data into predetermined categories. The aim of this study is to present an evaluat...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-017-0566-6
更新日期:2017-12-19 00:00:00
abstract:BACKGROUND:Colorectal cancer incidence and mortality have been increasing in China and as one of the most important health problems facing the nation. Adequate dissemination of correct information about colorectal cancer could help in reducing cancer-related morbidity and mortality. This study aims to assess the comple...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-018-0711-x
更新日期:2018-12-04 00:00:00
abstract:BACKGROUND:A pandemic affects healthcare delivery and consequently leads to socioeconomic complications. During a pandemic, a community where there lives an asymptomatic patient (AP) becomes a potential endemic zone. Assuming we want to monitor the travel and/or activity of an AP in a community where there is a pandemi...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-020-01258-z
更新日期:2020-09-29 00:00:00
abstract:BACKGROUND:Adopting mobile electronic medical record (MEMR) systems is expected to be one of the superior approaches for improving nurses' bedside and point of care services. However, nurses may use the functions for far fewer tasks than the MEMR supports. This may depend on their technological personality associated t...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-13-88
更新日期:2013-08-12 00:00:00
abstract:BACKGROUND:The Personal Patient Profile-Prostate (P3P), a web-based decision aid, was demonstrated to reduce decisional conflict in English-speaking men with localized prostate cancer early after initial diagnosis. The purpose of this study was to explore and enhance usability and cultural appropriateness of a Spanish ...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-015-0180-4
更新日期:2015-07-24 00:00:00
abstract:BACKGROUND:Publishing raw electronic health records (EHRs) may be considered as a breach of the privacy of individuals because they usually contain sensitive information. A common practice for the privacy-preserving data publishing is to anonymize the data before publishing, and thus satisfy privacy models such as k-an...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-017-0499-0
更新日期:2017-07-11 00:00:00
abstract:BACKGROUND:Many suggest that shared decision-making (SDM) is the most effective approach to clinical counseling. It is unclear if this applies to surgical decision-making-especially regarding urgent, highly-morbid operations. In this scoping review, we identify articles that address patient and surgeon preferences towa...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,评审
doi:10.1186/s12911-020-01211-0
更新日期:2020-08-12 00:00:00
abstract:BACKGROUND:Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians' visit notes included. We designed a one-year multi-site trial of online patient accessible office visit not...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-12-32
更新日期:2012-04-13 00:00:00
abstract:BACKGROUND:New algorithms for disease outbreak detection are being developed to take advantage of full electronic medical records (EMRs) that contain a wealth of patient information. However, due to privacy concerns, even anonymized EMRs cannot be shared among researchers, resulting in great difficulty in comparing the...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-10-59
更新日期:2010-10-14 00:00:00
abstract:BACKGROUND:A pilot experimentation of a telemonitoring system for chronic care patients is conducted in the Bilbao Primary Care Health Region (Basque Country, Spain). It seems important to understand the factors related to healthcare professionals' acceptance of this new technology in order to inform its extension to t...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-12-139
更新日期:2012-11-30 00:00:00
abstract:BACKGROUND:Adjuvant! Online ( http://www.adjuvantonline.com) is an Internet-based software program that allows clinicians to make predictions about the benefits of adjuvant therapy and 10-year survival probability for early-stage breast cancer patients. This model has been validated in Western countries such as the Uni...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-12-108
更新日期:2012-09-17 00:00:00
abstract:BACKGROUND:Mobile phone technology has demonstrated the potential to improve health service delivery, but there is little guidance to inform decisions about acquiring and implementing mHealth technology at scale in health systems. Using the case of community-based health services (CBS) in South Africa, we apply a frame...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-12-123
更新日期:2012-11-05 00:00:00
abstract:BACKGROUND:The quantitative study of the publication output (bibliometrics) deeply influences how scientific work is perceived (bibliometric visibility). Recently, new bibliometric indices and databases have been established, which may change the visibility of disciplines, institutions and individuals. This study exami...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-11-24
更新日期:2011-04-15 00:00:00
abstract:BACKGROUND:Healthcare and social care environments are increasingly confronted with older persons with long-term care needs. Consequently, the need for integrated and coordinated assessment systems increases. In Belgium, feasibility studies have been conducted on the implementation and use of interRAI instruments offer...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/1472-6947-13-129
更新日期:2013-11-27 00:00:00
abstract:BACKGROUND:Prostate cancer (PCa) represents a significant healthcare problem. The critical clinical question is the need for a biopsy. Accurate risk stratification of patients before a biopsy can allow for individualised risk stratification thus improving clinical decision making. This study aims to build a risk calcul...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-020-01174-2
更新日期:2020-07-03 00:00:00
abstract:BACKGROUND:Transient ischemic attack (TIA) is a brief episode of neurological dysfunction resulting from cerebral ischemia not associated with permanent cerebral infarction. TIA is associated with high diagnostic errors because of the subjective nature of findings and the lack of clinical and imaging biomarkers. The go...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-020-01154-6
更新日期:2020-06-18 00:00:00
abstract:BACKGROUND:Effective use of a patient decision aid (PtDA) can be affected by the user's health literacy and the PtDA's characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess: METHODS:We revie...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,评审
doi:10.1186/1472-6947-13-S2-S10
更新日期:2013-01-01 00:00:00
abstract:BACKGROUND:Demographic change with its consequences of an aging society and an increase in the demand for care in the home environment has triggered intensive research activities in sensor devices and smart home technologies. While many advanced technologies are already available, there is still a lack of decision supp...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章,评审
doi:10.1186/1472-6947-12-43
更新日期:2012-05-28 00:00:00
abstract:BACKGROUND:Medication events in clinical settings are significant threats to patient safety. Analyzing and learning from the medication event reports is an important way to prevent the recurrence of these events. Currently, the analysis of medication event reports is ineffective and requires heavy workloads for clinici...
journal_title:BMC medical informatics and decision making
pub_type: 杂志文章
doi:10.1186/s12911-018-0687-6
更新日期:2018-12-07 00:00:00