Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2012 Mar 5:12:52.
doi: 10.1186/1472-6963-12-52.

Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population

Affiliations

Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population

Gundi Knies et al. BMC Health Serv Res. .

Abstract

Background: The British Household Panel Survey (BHPS) is the first long-running UK longitudinal survey with a non-medical focus and a sample covering the whole age range to have asked for permission to link to a range of administrative health records. This study determines whether informed consent led to selection bias and reflects on the value of the BHPS linked with health records for epidemiological research.

Methods: Multivariate logistical regression is used, with whether the respondent gave consent to data linkage or not as the dependent variable. Independent variables were entered as four blocks; (i) a set of standard demographics likely to be found in most health registration data, (ii) a broader set of socio-economic characteristics, (iii) a set of indicators of health conditions and (iv) information about the use of health services.

Results: Participants aged 16-24, males and those living in England were more likely to consent. Consent is not biased with respect to socio-economic characteristics or health. Recent users of GP services are underrepresented among consenters.

Conclusions: Whilst data could only be linked for a minority of BHPS participants, the BHPS offers a great range of information on people's life histories, their attitudes and behaviours making it an invaluable source for epidemiological research.

PubMed Disclaimer

References

    1. Newell SA, Girgis A, Sanson-Fisher RW, Savolainen NJ. The accuracy of self-reported health behaviors and risk factors relating to cancer and cardiovascular disease in the general population: A critical review. Am J Prev Med. 1999;17(3):211–229. doi: 10.1016/S0749-3797(99)00069-0. - DOI - PubMed
    1. Okura Y, Urban LH, Mahoney DW, Jacobsen SJ, Rodeheffer RJ. Agreement between self-report questionnaires and medical record data was substantial for diabetes, hypertension, myocardial infarction and stroke but not for heart failure. J Clin Epidemiol. 2004;57(10):1096–1103. doi: 10.1016/j.jclinepi.2004.04.005. - DOI - PubMed
    1. Ritter PL, Stewart AL, Kaymaz H, Sobel DS, Block DA, Lorig KR. Self-reports of health care utilization compared to provider records. J Clin Epidemiol. 2001;54(2):136–141. doi: 10.1016/S0895-4356(00)00261-4. - DOI - PubMed
    1. Sauver JLS, Hagen PT, Cha SS, Bagniewski SM, Mandrekar JN, Curoe AM, Rodeheffer RJ, Roger VL, Jacobsen SJ. Agreement Between Patient Reports of Cardiovascular Disease and Patient Medical Records. Mayo Clin Proc. 2005;80(2):203–210. doi: 10.4065/80.2.203. - DOI - PubMed
    1. Baker R, Shiels C, Stevenson K, Fraser R, Stone M. What proportion of patients refuse consent to data collection from their records for research purposes? Br J Gen Pract. 2000;50(457):655–556. - PMC - PubMed

Publication types

LinkOut - more resources