Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

M-health review: joining up healthcare in a wireless world

In recent years, there has been a huge increase in the use of information and communication technologies (ICT) to deliver health and social care. This trend is bound to continue as providers (whether public or private) strive to deliver better care to more people under conditions of severe budgetary constraint

Requirements and access needs of patients with chronic disease to their hospital electronic health record: results of a cross-sectional questionnaire survey

Objectives: To identify patient’s views on the functionality required for personalised access to the secondary care EHR and their priorities for development. Design: Quantitative analysis of a cross-sectional self-complete survey of patient views on required EHR functionality from a secondary care EHR, including a patient ranking of functionality. Setting: Secondary care patients attending a regional cystic fibrosis unit in the north of England Participants: 201 adults [106 (52.7%) male], median age 29 years (range 17-58 years) entered and completed the study. Inclusion criteria; a confirmed diagnosis of CF, aged 16 years and over, at a time of clinical stability Outcome measures: Quantitative responses within 4 themes; 1) value placed on aspects of the EHR; 2) access requirements to functions of the EHR; 3) views on information sent to the EHR 4) patient feedback entered into the EHR. A ranked score for 15 functions of the EHR was obtained Results: Highest ratings (% reporting item as very important/important) were reported for access to clinical measures [lung function (94%), CRP (84%), sputum microbiology (81%) and blood results (80%)], medication changes (82%) and lists (83%) and sending repeat prescription (83%) and treatment requests (80%), whilst sending symptom diaries was less so (62%). Email contact with clinicians was the most valuable communication element of the EHR (84% very important/important). Of 15 features of the EHR [1=most desirable to 15=least desirable) patients identified ‘clinical measures’ [2.62 (CI 2.07-3.06)], and ‘access to medication lists’ [4.91 (CI 4.47-5.44)], as highest priority for development and the ability to comment on errors/ommissions [11.0 (CI 10.6-11.5)] or experience of care [11.8 (CI 11.4-12.2)] as lowest. Conclusions: Patients want extensive personal access to their hospital EHR, placing high importance on the viewing of practical clinical measures and medication management. These influence routine day to day care and are priorities for developmen

Evaluating the impact of electronic health records on clinical reasoning performance

This paper adapts and extends the task-technology fit model of performance to the health care domain and the clinical reasoning task. Central to this effort was careful adaptation of the task and technology characteristics constructs to the clinical reasoning task and electronic health record technology. Overall the results indicate a good fit between model and data. The contributions of this study include successful adaptation of a corner-stone information systems theory to a new domain and technology, a validated user evaluation instrument able to assess the impact of EHR use on clinical reasoning performance, and new insight on the factors that impact task-technology fit and clinical reasoning performance

Summary care record early adopter programme: an independent evaluation by University College London.

Benefits The main potential benefit of the SCR is considered to be in emergency and unscheduled care settings, especially for people who are unconscious, confused, unsure of their medical details, or unable to communicate effectively in English. Other benefits may include improved efficiency of care and avoidance of hospital admission, but it is too early for potential benefits to be verified or quantified. Progress As of end April 2008, the SCR of 153,188 patients in the first two Early Adopter sites (Bolton and Bury) had been created. A total of 614,052 patients in four Early Adopter sites had been sent a letter informing them of the programme and their choices for opting out of having a SCR. Staff attitudes and usage The evaluation found that many NHS staff in Early Adopter sites (which had been selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running, but a significant minority of GPs had chosen not to participate in the programme and others had deferred participation until data quality improvement work was completed. Whilst 80 per cent of patients interviewed were either positive about the idea of having a SCR or ?did not mind?, others were strongly opposed ?on principle?. Staff who had attempted to use the SCR when caring for patients felt that the current version was technically immature (describing it as ?clunky? and ?complicated?), and were looking forward to a more definitive version of the technology. A comparable technology (the Emergency Care Summary) introduced in Scotland two years ago is now working well, and over a million records have been accessed in emergency and out-of-hours care. Patient attitudes and awareness Having a SCR is optional (people may opt out if they wish, though fewer than one per cent of people in Early Adopter sites have done so) and technical security is said to be high via a system of password protection and strict access controls. Nevertheless, the evaluation showed that recent stories about data loss by government and NHS organisations had raised concerns amongst both staff and patients that human fallibility could potentially jeopardise the operational security of the system. Despite an extensive information programme to inform the public in Early Adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all. This raises important questions about the ethics of an ?implied consent? model for creating the SCR. The evaluation recommended that the developers of the SCR should consider a model in which the patient is asked for ?consent to view? whenever a member of staff wishes to access their record. Not a single patient interviewed in the evaluation was confident that the SCR would be 100 per cent secure, but they were philosophical about the risks of security breaches. Typically, people said that the potential benefit of a doctor having access to key medical details in an emergency outweighed the small but real risk of data loss due to human or technical error. Even patients whose medical record contained potentially sensitive data such as mental health problems, HIV or drug use were often (though not always) keen to have a SCR and generally trusted NHS staff to treat sensitive data appropriately. However, they and many other NHS patients wanted to be able to control which staff members were allowed to access their record at the point of care. Some doctors, nurses and receptionists, it seems, are trusted to view a person?s SCR, whereas others are not, and this is a decision which patients would like to make in real time