Limitations for health research with restricted data collection from UK primary care.
Pharmacoepidemiol Drug Saf
; 28(6): 777-787, 2019 06.
Article
in En
| MEDLINE
| ID: mdl-30993808
ABSTRACT
PURPOSE:
UK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of restricting the scope of electronic health record (EHR) data collection on the ability to conduct research. The study estimated the consequences of restricted data collection on published Clinical Practice Research Datalink studies from high impact journals or referenced in clinical guidelines.METHODS:
A structured form was used to systematically analyse the extent to which individual studies would have been possible using a database with data collection restrictions in place (1) retrospective collection of specified diseases only; (2) retrospective collection restricted to a 6- or 12-year period; (3) prospective and retrospective collection restricted to non-sensitive data. Outcomes were categorised as unfeasible (not reproducible without major bias); compromised (feasible with design modification); or unaffected.RESULTS:
Overall, 91% studies were compromised with all restrictions in place; 56% studies were unfeasible even with design modification. With restrictions on diseases alone, 74% studies were compromised; 51% were unfeasible. Restricting collection to 6/12 years had a major impact, with 67 and 22% of studies compromised, respectively. Restricting collection of sensitive data had a lesser but marked impact with 10% studies compromised.CONCLUSION:
EHR data collection restrictions can profoundly reduce the capacity for public health research that underpins evidence-based medicine and clinical guidance. National initiatives seeking to collect EHRs should consider the implications of restricting data collection on the ability to address vital public health questions.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Primary Health Care
/
Data Collection
/
Confidentiality
/
Evidence-Based Medicine
/
Electronic Health Records
Type of study:
Guideline
/
Prognostic_studies
/
Systematic_reviews
Limits:
Humans
Country/Region as subject:
Europa
Language:
En
Journal:
Pharmacoepidemiol Drug Saf
Journal subject:
EPIDEMIOLOGIA
/
TERAPIA POR MEDICAMENTOS
Year:
2019
Document type:
Article
Affiliation country:
Reino Unido