Engaging Patients in Data Quality

PRIMIS Engaging Patients in Data Quality Dr Alasdair Honeyman Shariffe Ghoneim Fifth Annual Conference 11 – 12 May 2005 Piecing Together the Future

DATA QUALITY: ENGAGING PATIENTS WITH ELECTRONIC MEDICAL RECORDS Presented by Shariffe Ghoneim Project team- Professor Phil Heywood, Dr Victoria Allgar Shane Pascoe & Karen Johnson

To provide a background to the topic area Outline the methods we have employed To present the findings from the review Outline the proposal for the next phase Aim

“A modern and dependable National Health Service needs accurate and instantly accessible information. It is vital for improving care for patients, for improving the performance of the NHS and the health of the nation” The rhetoric

“Practices should recognise that patients themselves are generally the most competent to judge the accuracy of their own historical information ” Patient involvement

Complete Accurate Relevant Accessible Timely What does data quality mean?Good quality can be described as:

To ascertain how patient involvement may improve quality of electronic medical records in primary care. To identify what aspects of data quality are improved by involving the patient. To make an assessment of patient outcomes in relation to involvement. To assess the processes of patient involvement and hence identify key steps in the processes Objectives of the Study

Methods of Systematic Review • Key words were devised based on previous research articles and research team meetings. • The search template was created in MEDLINE as this was viewed as the most extensive medical database. • The search strategy and retrieval was divided into specific topic areas:

The combination of search areas Data quality Patient involvement Primary care Electronic medical records Combination of all 4 topics

Documented all of the key issues (patient involvement, data quality, electronic medical records and primary care) The patient was principally involved in the intervention The study investigated access and verification of medical data by patients Studies that assess computerised records or some other patient specific computerised register Studies based in primary care Studies that took measurements of data before and after an intervention Inclusion criteria

Electronic patient records not included in any part. The efficacy of patient intervention not assessed. Not based in primary care Purely concerned with patient satisfaction and not to improving data quality. Foreign language literature. Studies which use fictional or simulated patients Editorials, letters and commentaries Exclusion criteria

To ensue a transparent approach we selected 51 articles to be reviewed independently by three assessors. We found agreement for inclusion on 49/51 (96%) abstracts. Full articles were requested when there was no full consensus of opinion Inter-rater reliability

ResultsFinal total of accepted/ rejected papers

Methodologies Intervention Access to records Data analysis undertaken Impact on data quality Impact on health behaviour / objective health measures Data extraction

The mean age of patients in each study ranged from 45 to 65 years. There was a higher proportion of women in all the studies. Overview of studies

Patients accessed records electronically and remotely (3½” floppy disk) and could check/ amend on a PC (2 studies) Patients accessed records at the practice, in booths that gave them privacy to view the PC (2 studies) Accessing the record -1

A supplementary (patient-held) record to document changes in health (1 study). Patients given a paper copy of the medical record (3 studies). Not explicitly stated how the patient viewed their record (2 studies). Accessing the record -2

Health measures were noted in studies that specifically focussed on specific patient populations. Improvement in health measures and increased engagement in health behaviours were reported. Health outcomes

Patients invaluable in achieving quality data. Patients lack understanding of clinical terms, classifications and abbreviations. Studies mainly measure accuracy and completeness. Patient and the physician may differ in their interpretations of terms. Sensitive issues caused the most problems between doctor and patient. Emerging themes - 1

Some patients had difficulties using the computers. Patient factors included: memory of the event subsequent course of treatment type and frequency of interventions their agreement with the diagnosis significance of the entry in their record. ? improved clinical outcomes (evidence is limited). Emerging themes - 2

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Engaging Patients in Data Quality