Collaborative data familiarisation and quality assessment: Reflections from use of a national dataset to investigate palliative care for Indigenous Australians

2020 ◽  
Vol 50 (1-2) ◽  
pp. 64-75
Author(s):  
John A Woods ◽  
Claire E Johnson ◽  
Samuel F Allingham ◽  
Hanh T Ngo ◽  
Judith M Katzenellenbogen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Data Quality ◽  
Quality Assessment ◽  
Quantitative Research ◽  
Missing Values ◽  
Clinical Care ◽  
Indigenous Australians ◽  
Indigenous Australian ◽  
Secondary Use ◽  
Continuous Quality

Background: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement. Objectives: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research. Method: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest. Results: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010–30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses. Conclusion and implications: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.

scholarly journals Occurrence and timely management of problems requiring prompt intervention among Indigenous compared with non-Indigenous Australian palliative care patients: a multijurisdictional cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e042268
Author(s):  
John A Woods ◽  
Judith M Katzenellenbogen ◽  
Kevin Murray ◽  
Claire E Johnson ◽  
Sandra C Thompson
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Cultural Barriers ◽  
Survival Models ◽  
Indigenous Australians ◽  
Specialist Palliative Care ◽  
Indigenous Australian ◽  
Phase Duration ◽  
Core Element ◽  
Similar Frequency

ObjectivesAnticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode divided into phases that reflect a patient’s condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of ‘unstable’ phases (which indicate unanticipated deterioration in a patient’s condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups.DesignCohort study.SettingAustralia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015).Participants139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients.Outcome measuresIndigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged (>3 days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models.ResultsUnstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06; 95% CI 1.00 to 1.11; not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration >3 days in 24.3% vs 25.5%; p=0.398).ConclusionsDespite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.

scholarly journals Application of an Ontology for Characterizing Data Quality for a Secondary Use of EHR Data

2016 ◽  
Vol 07 (01) ◽  
pp. 69-88 ◽  
Author(s):  
Stuart Speedie ◽  
Gyorgy Simon ◽  
Vipin Kumar ◽  
Bonnie Westra ◽  
Steven Johnson
Keyword(s):  
Electronic Health Record ◽  
Data Quality ◽  
Quality Assessment ◽  
Quality Measures ◽  
Assessment Process ◽  
Health Record ◽  
Secondary Use ◽  
Data Quality Assessment ◽  
Data Quality Metrics ◽  
And Task

SummaryThe goal of this study is to apply an ontology based assessment process to electronic health record (EHR) data and determine its usefulness in characterizing data quality for calculating an example eMeasure (CMS178).The process uses a data quality ontology that references separate data quality, domain and task ontologies to compute measures based on proportions of constraints that are satisfied. These quantities indicate how well the data conforms to the domain and how well it fits the task.The process was performed on a de-identified 200,000 encounter sample from a hospital EHR. CodingConsistency was poor (44%) but DomainConsistency (97%) and TaskRelevance (95%) were very good. Improvements in the data quality Measures correlated with improvements in the eMeasure.This approach can encourage the development of new detailed Domain ontologies that can be reused for data quality purposes across different organizations’ EHR data. Automating the data quality assessment process using this method can enable sharing of data quality metrics that may aid in making research results that use EHR data more transparent and reproducible.

scholarly journals Development of a systematic approach to assessing quality within Australian residential aged care facilities: the Clinical Care Indicators Tool

2007 ◽  
Vol 31 (4) ◽  
pp. 582 ◽  
Author(s):  
Mary Courtney ◽  
Maria T O'Reilly ◽  
Helen Edwards ◽  
Stacey Hassall
Keyword(s):  
Quality Improvement ◽  
Quality Assessment ◽  
Assessment Tool ◽  
Clinical Care ◽  
Effective Means ◽  
Aged Care ◽  
Residential Aged Care ◽  
Positive Contribution ◽  
Clinical Indicators ◽  
Continuous Quality

Recent years have seen the introduction of formalised accreditation processes in both community and residential aged care, but these only partially address quality assessment within this sector. Residential aged care in Australia does not yet have a standardised system of resident assessment related to clinical, rather than administrative, outcomes. This paper describes the development of a quality assessment tool aimed at addressing this gap. Utilising previous research and the results of nominal groups with experts in the field, the 21-item Clinical Care Indicators (CCI) Tool for residential aged care was developed and trialled nationally. The CCI Tool was found to be simple to use and an effective means of collecting data on the state of resident health and care, with potential benefits for resident care planning and continuous quality improvement within facilities and organisations. The CCI Tool was further refined through a small intervention study to assess its utility as a quality improvement instrument and to investigate its relationship with resident quality of life. The current version covers 23 clinical indicators, takes about 30 minutes to complete and is viewed favourably by nursing staff who use it. Current work focuses on psychometric analysis and benchmarking, which should enable the CCI Tool to make a positive contribution to the measurement of quality in aged care in Australia.

Patient-Centered Care and Autonomy: Shared Decision-Making in Practice and a Suggestion for Practical Application in the Critically Ill

2019 ◽  
Vol 35 (11) ◽  
pp. 1352-1355
Author(s):  
Marianna V. Mapes ◽  
Peter A. DePergola ◽  
William T. McGee
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Critically Ill ◽  
Care Service ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Practical Application ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Centered Care

Decision-making for the hospitalized dying and critically ill is often characterized by an understanding of autonomy that leads to clinical care and outcomes that are antithetical to patients’ preferences around suffering and quality of life. A better understanding of autonomy will facilitate the ultimate goal of a patient-centered approach and ensure compassionate, high-quality care that respects our patients’ values. We reviewed the medical literature and our experiences through the ethics service, palliative care service, and critical care service of a large community teaching hospital. The cumulative experience of a senior intensivist was filtered through the lens of a medical ethicist and the palliative care team. The practical application of patient-centered care was discerned from these interactions. We determined that a clearer understanding of patient-centeredness would improve the experience and outcomes of care for our patients as well as our adherence to ethical practice. The practical applications of autonomy and patient-centered care were evaluated by the authors through clinical interactions on the wards to ascertain problems in understanding their meaning. Clarification of autonomy and patient-centeredness is provided using specific examples to enhance understanding and application of these principles in patient-centered care.

scholarly journals Implementing an automated monitoring process in a digital, longitudinal observational cohort study

2021 ◽  
Vol 23 (1) ◽  
Author(s):  
Lisa Lindner ◽  
Anja Weiß ◽  
Andreas Reich ◽  
Siegfried Kindler ◽  
Frank Behrens ◽  
...  
Keyword(s):  
Cohort Studies ◽  
Data Quality ◽  
Missing Values ◽  
Randomized Clinical Trials ◽  
Cost Effective ◽  
Observational Research ◽  
Research Centre ◽  
Automated Monitoring ◽  
Monitoring Process ◽  
Observational Cohort

Abstract Background Clinical data collection requires correct and complete data sets in order to perform correct statistical analysis and draw valid conclusions. While in randomized clinical trials much effort concentrates on data monitoring, this is rarely the case in observational studies- due to high numbers of cases and often-restricted resources. We have developed a valid and cost-effective monitoring tool, which can substantially contribute to an increased data quality in observational research. Methods An automated digital monitoring system for cohort studies developed by the German Rheumatism Research Centre (DRFZ) was tested within the disease register RABBIT-SpA, a longitudinal observational study including patients with axial spondyloarthritis and psoriatic arthritis. Physicians and patients complete electronic case report forms (eCRF) twice a year for up to 10 years. Automatic plausibility checks were implemented to verify all data after entry into the eCRF. To identify conflicts that cannot be found by this approach, all possible conflicts were compiled into a catalog. This “conflict catalog” was used to create queries, which are displayed as part of the eCRF. The proportion of queried eCRFs and responses were analyzed by descriptive methods. For the analysis of responses, the type of conflict was assigned to either a single conflict only (affecting individual items) or a conflict that required the entire eCRF to be queried. Results Data from 1883 patients was analyzed. A total of n = 3145 eCRFs submitted between baseline (T0) and T3 (12 months) had conflicts (40–64%). Fifty-six to 100% of the queries regarding eCRFs that were completely missing were answered. A mean of 1.4 to 2.4 single conflicts occurred per eCRF, of which 59–69% were answered. The most common missing values were CRP, ESR, Schober’s test, data on systemic glucocorticoid therapy, and presence of enthesitis. Conclusion Providing high data quality in large observational cohort studies is a major challenge, which requires careful monitoring. An automated monitoring process was successfully implemented and well accepted by the study centers. Two thirds of the queries were answered with new data. While conventional manual monitoring is resource-intensive and may itself create new sources of errors, automated processes are a convenient way to augment data quality.

scholarly journals OP0151-PARE WORK IMPACTS EXPERIENCED BY YOUNGER PEOPLE WITH ARTHRITIS: A SYSTEMATIC REVIEW

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 95.1-96
Author(s):  
D. Berkovic ◽  
C. Parker ◽  
D. Ayton ◽  
A. M. Briggs ◽  
I. Ackerman
Keyword(s):  
Quality Assessment ◽  
Clinical Care ◽  
Work Participation ◽  
Work Outcomes ◽  
Healthy Population ◽  
Younger Adults ◽  
Horizon 2020 ◽  
Workplace Support ◽  
Workplace Challenges ◽  
The Impact

Background:On a global scale, it is estimated that adults in their peak income-earning years are disproportionately impacted by arthritis (1). Younger adults with arthritis are less likely to be employed and are more likely to face productivity challenges at work when compared to healthy similar-aged peers (2). The work-related impacts of arthritis on younger adults remain largely unexplored and are rarely considered in routine clinical care for arthritis.Objectives:To systematically identify, appraise and synthesise the available evidence on work impacts experienced by individuals aged 16-50 years with arthritis.Methods:Eligible studies from 2000 - 2020 were identified in OVID Medline, PsycINFO, Embase, and CINAHL databases using a comprehensive search strategy. Quantitative and qualitative studies containing self-reported data on the work impacts of arthritis on younger people were included. Quality assessment was undertaken using validated quality appraisal tools (3).Results:From a yield of 300 studies, 35 were included in the review. After quality assessment and exclusion of the lowest-ranked studies, 28 studies (17 quantitative, 11 qualitative) were analysed. Work outcomes data were organised into five themes (1-3 for quantitative outcomes, 4-5 for qualitative outcomes): (1) the impacts of arthritis on work productivity; (2) the impacts of arthritis on work participation; (3) other arthritis attributable workplace challenges; (4) barriers to work participation associated with arthritis, and (5) enablers to work participation associated with arthritis. For quantitative themes, arthritis was strongly associated with other workplace challenges: scores on the Workplace Activity Limitations Scale ranged from 5.9 (moderate workplace difficulty) to 9.8 (considerable workplace difficulty); and work disability relative to the healthy population (prevalence ranging from 6% - 80%). For qualitative themes, barriers to work participation included lack of workplace support; enablers included workplace support and intrinsic motivation to work.Conclusion:Arthritis is associated with poorer work outcomes for younger people relative to healthy peers. The available evidence was heterogeneous across studies. Additional research focusing solely on the unique workplace needs of younger population groups is required. This would inform the development of tailored intervention or workplace support strategies to maximise productive working years.References:[1]European League Against Rheumatism. Horizon 2020 Framework Programme: EULAR’s positions and recommendations. EULAR 2011.[2]Jetha A. (2015). The impact of arthritis on the early employment experiences of young adults: A literature review. Disabil Health J. 8(3) 317-324.[3]Joanna Briggs Institute. Critical Appraisal Tools. The University of Adelaide 2019.Disclosure of Interests:None declared

scholarly journals Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: a systematic review

2021 ◽  
pp. jnnp-2020-323939
Author(s):  
Umer Akbar ◽  
Robert Brett McQueen ◽  
Julienne Bemski ◽  
Julie Carter ◽  
Elizabeth R Goy ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
End Of Life ◽  
Cause Of Death ◽  
Quantitative Research ◽  
Motor Dysfunction ◽  
Clinical Markers ◽  
Hospice Referral ◽  
Survey Responses

Parkinson’s disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970–2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson’s Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD.

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