Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

BACKGROUND: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. AIM: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. DESIGN: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. PARTICIPANTS: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). RESULTS: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. CONCLUSIONS: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

Factors Influencing the Implementation of Digital Advance Care Planning: Qualitative Interview Study.

BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.

Looking at the future of the medical certification of cause of death (MCCD) in England and Wales.

Internationally, the quality of death certification is poor although there are multiple efforts underway to improve the process. In England, a new medical certification system has been proposed to improve the quality of data. We surveyed general practitioners (n = 95) across the West Yorkshire area of England to appraise their views regarding whether further possible changes to the death certification system could promote their quality.

Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

BACKGROUND: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. AIM: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. DESIGN: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. SETTING/PARTICIPANTS: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. RESULTS: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. CONCLUSIONS: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners.

OBJECTIVES: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation. METHODS: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS. RESULTS: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences. CONCLUSIONS: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery.

Consultation analysis: use of free text versus coded text.

General practice in the United Kingdom has been using electronic health records for over two decades, but coding clinical information remains poor. Lack of interest and training are considerable barriers preventing code use levels improvement. Tailored training could be the way forward, to break barriers in the uptake of coding; to do so it is paramount to understand coding use of the particular clinicians, to recognise their needs. It should be possible to easily assess text quantity and quality in medical consultations. A tool to measure these parameters, which could be used to tailor training needs and assess change, is demonstrated. The tool is presented and a preliminary study using a randomised sample of five recent consultations from thirteen different clinicians is used as an example. The tool, based on using a word processor and a spread-sheet, allowed quantitative analysis among clinicians while word clouds permitted a qualitative comparison between coded and free text. The average amount of free text per consultation was 68.2 words, (ranging from 25.4 and 130.2 among clinicians); an average of 6% of the text was coded (ranging from 0 to 13%). Patterns among clinicians could be identified. Using Word cloud, a different text use was demonstrated depending on its purpose. Some free text could be turned into code but nomenclature probably prevented some of the codings, like the expression of time. This proof of concept demonstrated that it is possible to calculate what percentage of consultations are coded and what codes are used. This allowed understanding clinicians' preferences; training needs and gaps in nomenclature.

Non-systematic review: Correspondence quality and interoperability between family physicians and hospital clinicians.

BACKGROUND: Medical correspondence between physicians working in the community and in hospital is paramount to provide continuity of care, but there is no agreement on what constitutes a good quality letter, not even interest by some clinicians on this interface. Information flow could be faster electronically rather than in paper, but is content improving? What defines a good letter? AIM: (a) To assess what information should be shared between family doctors and hospital physicians and could it be shared better. (b) To assess the possibility of linking the sections of the letter to SNOMED-CT codes to improve interoperability. RESULTS: Authors vary regarding what is to be included in communications, and as they also have different needs among services, it creates a very long list of possible items to consider. Standardised templates with their corresponding SNOMED-CT codes are presented. CONCLUSION: Standardised correspondence could improve continuity of care. Appropriately coded it could facilitate the information sharing and the data manipulation required to provide an adequate provision of services among primary care or family physicians and hospitals or secondary care organisations. It could also serve as a tool to assess clinicians' performance.

Electronic palliative care coordination system (EPaCCS) in practice: A useful tool?

OBJECTIVES: First, to assess if Electronic Palliative Care Coordination Systems (EPaCCS) was used by different organisations as a tool to share information; second, to assess whether there was a measurable benefit with patients dying at their preferred place of death. METHODS: A retrospective analysis of the 65 decedents from last 12 months in the registered list of a single practice in Leeds was conducted. RESULTS: EPaCCS was present in 24 patients (36.9%). It was used by more than one organisation in 17 cases (70.9%). It facilitated death at the preferred place in 19 of the 20 cases (95%) were preferences were recorded. CONCLUSIONS: EPaCCS within the organisation was not used as widely as it could have been presumed. Having a patient with an EPaCCS in the electronic medical records did not imply there was sharing of information among the different organisations involved. Although there was a clear impact on individuals dying at their preferred place of death, preferences were not necessarily recorded in EPaCCS.

Medical certificate of cause of death: Looking for an European single standard.

The European Union share many laws, and medical certification of cause of death standards should be probably one of them. In an analysis of medical certificates of cause of death (MCCD) from 27 countries that form or formed part of the European Union, there was considerable variability of their content. Ways to improve and harmonize the current datasets are suggested, based on what is done in different European nations, and that could be adopted elsewhere, sharing good practice. It is also suggested the need to allow the cause of death to be, at least partially, available to relatives, to help with the bereavement process and any required proceedings (which could be different to the country of issue of the certification). This common approach could reduce the risk of errors among clinicians working across different nations; it could improve information flow when decedents are transferred among distinct countries and their forms are processed; and eventually, it could help when mortality data is used to compare states.

Death certification in England must evolve (Considering current technology).

The death certificate form used in England and Wales is analysed, compared to other available forms in top ranking economies, to determine its fitness for purpose. There are several restrictions linked to its use and also many limitations. Areas where it can evolve and where improvement can be achieved are suggested.

Large retrospective analysis on frailty assessment in primary care: electronic Frailty Index versus frailty coding.

BACKGROUND: Primary care in UK is expected to use tools such as the electronic Frailty Index (eFI) to identify patients with frailty, which should be then validated and coded accordingly. AIM: To assess the influence of organisation and software on how eFI score and direct clinical validation occurs across practices in Leeds. METHOD: The 'minimum necessary' anonymised patient data required for the study (recorded eFI scores and frailty codes - mild, moderate or severe - with their dates of entry) was requested to the Health and Care Hub of the NHS Leeds Clinical Commissioning Group. Data from 44 185 patients from 104 practices using two different clinical software were collected. Descriptive statistics was carried out using SPSS software. RESULTS: 42 593 patients had a frailty code, 8881 had an eFI code. 7341 had both types of entry, and correlation between eFI and coded level of frailty was as expected high (85.3%), but there was statistically significant variation depending on practice and software used. When results did not match, there was a tendency to overstate, to code a level of frailty above the value to be assigned based on the numeric value of eFI, and it was more so on those practices using SystmOne software compared with those using EMIS Web. CONCLUSIONS: Although correlation was generally good, the variability encountered would indicate the need for training and also for software improvements to reduce current disparity and facilitate validation, so frailty level is adequately recorded.

Can we trust Electronic health records? The Smoking Test for Commission Errors.

BACKGROUND: Considerable interest exists on using general practice electronic health records (EHR) for research and other uses. There is also concern on their quality. AIM: We suggest a simple test to assess errors of commission and in consequence overall EHR data quality that can be done on a periodical basis. METHOD: Patient records with simultaneous entries of three different stages on smoking were studied. The codes "Never smoked tobacco", "smoker" and "ex-smoker" should follow this chronological order. It should then be possible to extrapolate the overall level of errors of commission for the organisation. RESULTS: The Smoking Test in our sample found errors in 169 patients, with 60 cases where dual errors were discovered. We express it as an estimated error of commission level of 2.6% related to the total population of the practice. CONCLUSIONS: Considering the constant and regular entries on smoking status (83.59% of the entries were done over last month), we can conclude smoking entries analysis can serve as a simple test to periodically assess the overall EHR data quality, and any trends.

Is palliative care support associated with better quality end-of-life care indicators for patients with advanced cancer? A retrospective cohort study.

OBJECTIVES: This study aimed to establish the association between timing and provision of palliative care (PC) and quality of end-of-life care indicators in a population of patients dying of cancer. SETTING: This study uses linked cancer patient data from the National Cancer Registry, the electronic medical record system used in primary care (SystmOne) and the electronic medical record system used within a specialist regional cancer centre. The population resided in a single city in Northern England. PARTICIPANTS: Retrospective data from 2479 adult cancer decedents who died between January 2010 and February 2012 were registered with a primary care provider using the SystmOne electronic health record system, and cancer was certified as a cause of death, were included in the study. RESULTS: Linkage yielded data on 2479 cancer decedents, with 64.5% who received at least one PC event. Decedents who received PC were significantly more likely to die in a hospice (39.4% vs 14.5%, P<0.005) and less likely to die in hospital (23.3% vs 40.1%, P<0.05), and were more likely to receive an opioid (53% vs 25.2%, P<0.001). PC initiated more than 2 weeks before death was associated with avoiding a hospital death (≥2 weeks, P<0.001), more than 4 weeks before death was associated with avoiding emergency hospital admissions and increased access to an opioid (≥4 weeks, P<0.001), and more than 33 weeks before death was associated with avoiding late chemotherapy (≥33 weeks, no chemotherapy P=0.019, chemotherapy over 4 weeks P=0.007). CONCLUSION: For decedents with advanced cancer, access to PC and longer duration of PC were significantly associated with better end-of-life quality indicators.

New Year, New Challenges for Community Acquired Pneumonia / Nuevo año, nuevos desafíos respecto a la neumonía adquirida en la comunidad

No disponible