The UK Freedom of Information Act (2000) in healthcare research: a systematic review

OBJECTIVES: To assess the use and utility of the Freedom of Information Act (2000) in healthcare research since 2005 and to determine if any particular feature of studies found led to greater data acquisition. DESIGN: PRISMA compliant systematic review. PARTICIPANTS: An extensive literature search was performed of EMBASE, MEDLINE, CINAHL, psychINFO, BNI, AMED, HMIC and Health business elite databases from January 2005 to January 2013 using terms ‘Freedom of information’, ‘Freedom of information act’ and ‘Freedom of information act 2000’. Papers were considered for publication if they described utilising the UK Freedom of information act to gather data for healthcare research. 16 articles met these criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome was the number and characteristics of studies utilising the Freedom of Information Act to collect the data for healthcare research. Secondary outcome measures were any features that improved data acquisition rates (including to whom the request was made, the number of questions asked per request, etc.) RESULTS: 16 articles described utilising the Freedom of Information Act for healthcare research, and these investigated a broad range of topics. The median number of requests made was 86 (range 1–172), the total number of requests was 1732. A total of 15 817 pieces of data were retrieved by all studies. The amount of data collected was defined as the number of questions asked multiplied by the number of full responses. A median of five questions were asked per study (range 5–6.5) and the overall response rate was 86%. The National Health Service litigation authority responded to 100% of requests, while Primary Care Trusts had the lowest response rate of 81% for healthcare bodies. A positive correlation between number of requests made and data obtained (0.508, p<0.05) and number of requests made and increased response rate (0.737, p<0.01), both reached the statistical significance. CONCLUSIONS: Researchers should make greater use of the Act to access the information they need that is not otherwise disclosed. We discuss the issues with the research utilising the Act and how future research of this type could be optimised.