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Published in: BMC Medical Informatics and Decision Making 1/2011

Open Access 01-12-2011 | Research article

Detecting referral and selection bias by the anonymous linkage of practice, hospital and clinic data using Secure and Private Record Linkage (SAPREL): case study from the evaluation of the Improved Access to Psychological Therapy (IAPT) service

Authors: Simon de Lusignan, Rob Navarro, Tom Chan, Glenys Parry, Kim Dent-Brown, Tony Kendrick

Published in: BMC Medical Informatics and Decision Making | Issue 1/2011

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Abstract

Background

The evaluation of demonstration sites set up to provide improved access to psychological therapies (IAPT) comprised the study of all people identified as having common mental health problems (CMHP), those referred to the IAPT service, and a sample of attenders studied in-depth. Information technology makes it feasible to link practice, hospital and IAPT clinic data to evaluate the representativeness of these samples. However, researchers do not have permission to browse and link these data without the patients' consent.

Objective

To demonstrate the use of a mixed deterministic-probabilistic method of secure and private record linkage (SAPREL) - to describe selection bias in subjects chosen for in-depth evaluation.

Method

We extracted, pseudonymised and used fuzzy logic to link multiple health records without the researcher knowing the patient's identity. The method can be characterised as a three party protocol mainly using deterministic algorithms with dynamic linking strategies; though incorporating some elements of probabilistic linkage. Within the data providers' safe haven we extracted: Demographic data, hospital utilisation and IAPT clinic data; converted post code to index of multiple deprivation (IMD); and identified people with CMHP. We contrasted the age, gender, ethnicity and IMD for the in-depth evaluation sample with people referred to IAPT, use hospital services, and the population as a whole.

Results

The in IAPT-in-depth group had a mean age of 43.1 years; CI: 41.0 - 45.2 (n = 166); the IAPT-referred 40.2 years; CI: 39.4 - 40.9 (n = 1118); and those with CMHP 43.6 years SEM 0.15. (n = 12210). Whilst around 67% of those with a CMHP were women, compared to 70% of those referred to IAPT, and 75% of those subject to in-depth evaluation (Chi square p< 0.001). The mean IMD score for the in-depth evaluation group was 36.6; CI: 34.2 - 38.9; (n = 166); of those referred to IAPT 38.7; CI: 37.9 - 39.6; (n = 1117); and of people with CMHP 37.6; CI 37.3-37.9; (n = 12143).

Conclusions

The sample studied in-depth were older, more likely female, and less deprived than people with CMHP, and fewer had recorded ethnic minority status. Anonymous linkage using SAPREL provides insight into the representativeness of a study population and possible adjustment for selection bias.
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Literature
1.
go back to reference Henderson M, Page L: Appraising the evidence: what is selection bias?. Evid Based Ment Health. 2007, 10 (3): 67-8. 10.1136/ebmh.10.3.67.CrossRefPubMed Henderson M, Page L: Appraising the evidence: what is selection bias?. Evid Based Ment Health. 2007, 10 (3): 67-8. 10.1136/ebmh.10.3.67.CrossRefPubMed
2.
go back to reference de Lusignan S, Chan T: The development of primary care information technology in the United kingdom. J Ambul Care Manage. 2008, 31 (3): 201-10.CrossRefPubMed de Lusignan S, Chan T: The development of primary care information technology in the United kingdom. J Ambul Care Manage. 2008, 31 (3): 201-10.CrossRefPubMed
3.
go back to reference Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC: Written informed consent and selection bias in observational studies using medical records: systematic review. BMJ. 2009, 338: b866-10.1136/bmj.b866.CrossRefPubMedPubMedCentral Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC: Written informed consent and selection bias in observational studies using medical records: systematic review. BMJ. 2009, 338: b866-10.1136/bmj.b866.CrossRefPubMedPubMedCentral
4.
go back to reference de Lusignan S: Using routinely collected patient data with and without consent: trust and professionalism. Inform Prim Care. 2008, 16 (4): 251-4.PubMed de Lusignan S: Using routinely collected patient data with and without consent: trust and professionalism. Inform Prim Care. 2008, 16 (4): 251-4.PubMed
5.
go back to reference Navarro R: An ethical framework for sharing patient data without consent. Inform Prim Care. 2008, 16 (4): 257-62.PubMed Navarro R: An ethical framework for sharing patient data without consent. Inform Prim Care. 2008, 16 (4): 257-62.PubMed
6.
go back to reference Neame R: Privacy and health information: health cards offer a workable solution. Inform Prim Care. 2008, 16 (4): 263-70.PubMed Neame R: Privacy and health information: health cards offer a workable solution. Inform Prim Care. 2008, 16 (4): 263-70.PubMed
7.
go back to reference de Lusignan S, Sullivan F, Krause P: Vault, cloud and agent: choosing strategies for quality improvement and research based on routinely collected health data. Inform Prim Care. 2010, 18 (1): 1-4.PubMed de Lusignan S, Sullivan F, Krause P: Vault, cloud and agent: choosing strategies for quality improvement and research based on routinely collected health data. Inform Prim Care. 2010, 18 (1): 1-4.PubMed
8.
go back to reference Clark DM, Layard R, Smithies R, Richards DA, Suckling R, Wright B: Improving access to psychological therapy: Initial evaluation of two UK demonstration sites. Behav Res Ther. 2009, 47 (11): 910-20. 10.1016/j.brat.2009.07.010.CrossRefPubMedPubMedCentral Clark DM, Layard R, Smithies R, Richards DA, Suckling R, Wright B: Improving access to psychological therapy: Initial evaluation of two UK demonstration sites. Behav Res Ther. 2009, 47 (11): 910-20. 10.1016/j.brat.2009.07.010.CrossRefPubMedPubMedCentral
9.
go back to reference Parry G, Brazier J, Dent-Brown K, Hardy G, Kendrick T, Rick J, Chambers E, Chan T, Connell J, Hutten R, de Lusignan S, Mukuria C, Saxon D, Bower P, Lovell K: An evaluation of a new service model: Improving Access to Psychological Therapies demonstration sites 2006-2009Final report. NIHR Service Delivery and Organisation programme;. 2010 Parry G, Brazier J, Dent-Brown K, Hardy G, Kendrick T, Rick J, Chambers E, Chan T, Connell J, Hutten R, de Lusignan S, Mukuria C, Saxon D, Bower P, Lovell K: An evaluation of a new service model: Improving Access to Psychological Therapies demonstration sites 2006-2009Final report. NIHR Service Delivery and Organisation programme;. 2010
10.
go back to reference van Vlymen J, de Lusignan S, Hague N, Chan T, Dzregah B: Ensuring the Quality of Aggregated General Practice Data: Lessons from the Primary Care Data Quality Programme (PCDQ). Stud Health Technol Inform. 2005, 116: 1010-5.PubMed van Vlymen J, de Lusignan S, Hague N, Chan T, Dzregah B: Ensuring the Quality of Aggregated General Practice Data: Lessons from the Primary Care Data Quality Programme (PCDQ). Stud Health Technol Inform. 2005, 116: 1010-5.PubMed
11.
go back to reference van Vlymen J, de Lusignan S: A system of metadata to control the process of query, aggregating, cleaning and analysing large datasets of primary care data. Inform Prim Care. 2005, 13 (4): 281-91.PubMed van Vlymen J, de Lusignan S: A system of metadata to control the process of query, aggregating, cleaning and analysing large datasets of primary care data. Inform Prim Care. 2005, 13 (4): 281-91.PubMed
12.
go back to reference Ng S: Posets and protocols - Picking the right three-party protocol. IEEE J Sel Areas Commun. 2003, 21 (1): 55-61. 10.1109/JSAC.2002.806126.CrossRef Ng S: Posets and protocols - Picking the right three-party protocol. IEEE J Sel Areas Commun. 2003, 21 (1): 55-61. 10.1109/JSAC.2002.806126.CrossRef
15.
go back to reference Blakely T, Salmond C: Probabilistic record linkage and a method to calculate the positive predictive value. Int J Epidemiol. 2002, 31 (6): 1246-1252. 10.1093/ije/31.6.1246.CrossRefPubMed Blakely T, Salmond C: Probabilistic record linkage and a method to calculate the positive predictive value. Int J Epidemiol. 2002, 31 (6): 1246-1252. 10.1093/ije/31.6.1246.CrossRefPubMed
17.
go back to reference Kumarapeli P, Stepaniuk R, de Lusignan S, Williams R, Rowlands G: Ethnicity recording in general practice computer systems. J Public Health (Oxf). 2006, 28 (3): 283-7. 10.1093/pubmed/fdl044.CrossRef Kumarapeli P, Stepaniuk R, de Lusignan S, Williams R, Rowlands G: Ethnicity recording in general practice computer systems. J Public Health (Oxf). 2006, 28 (3): 283-7. 10.1093/pubmed/fdl044.CrossRef
18.
go back to reference Wajda A, Roos LL: Simplifying record linkage: software and strategy. Comput Biol Med. 1987, 17 (4): 239-48. 10.1016/0010-4825(87)90010-2.CrossRefPubMed Wajda A, Roos LL: Simplifying record linkage: software and strategy. Comput Biol Med. 1987, 17 (4): 239-48. 10.1016/0010-4825(87)90010-2.CrossRefPubMed
19.
go back to reference Jaro MA: Probabilistic linkage of large public health data files. Stat Med. 1995, 15;14 (5-7): 491-8.CrossRef Jaro MA: Probabilistic linkage of large public health data files. Stat Med. 1995, 15;14 (5-7): 491-8.CrossRef
20.
go back to reference Wajda A, Roos LL, Layefsky M, Singleton JA: Record linkage strategies: Part II. Portable software and deterministic matching. Methods Inf Med. 1991, 30 (3): 210-4.PubMed Wajda A, Roos LL, Layefsky M, Singleton JA: Record linkage strategies: Part II. Portable software and deterministic matching. Methods Inf Med. 1991, 30 (3): 210-4.PubMed
22.
go back to reference Koopmans PC, Roelen CA, Bültmann U, Hoedeman R, van der Klink JJ, Groothoff JW: Gender and age differences in the recurrence of sickness absence due to common mental disorders: a longitudinal study. BMC Public Health. 2010, 10: 426-10.1186/1471-2458-10-426.CrossRefPubMedPubMedCentral Koopmans PC, Roelen CA, Bültmann U, Hoedeman R, van der Klink JJ, Groothoff JW: Gender and age differences in the recurrence of sickness absence due to common mental disorders: a longitudinal study. BMC Public Health. 2010, 10: 426-10.1186/1471-2458-10-426.CrossRefPubMedPubMedCentral
24.
go back to reference Kingsford R, Webber M: Social deprivation and the outcomes of crisis resolution and home treatment for people with mental health problems: a historical cohort study. Health Soc Care Community. 2010, 18 (5): 456-64. 10.1111/j.1365-2524.2010.00918.x.CrossRefPubMed Kingsford R, Webber M: Social deprivation and the outcomes of crisis resolution and home treatment for people with mental health problems: a historical cohort study. Health Soc Care Community. 2010, 18 (5): 456-64. 10.1111/j.1365-2524.2010.00918.x.CrossRefPubMed
25.
go back to reference Riva M, Bambra C, Curtis S, Gauvin L: Collective resources or local social inequalities? Examining the social determinants of mental health in rural areas. Eur J Public Health. 2011, 21 (2): 197-203. 10.1093/eurpub/ckq064.CrossRefPubMed Riva M, Bambra C, Curtis S, Gauvin L: Collective resources or local social inequalities? Examining the social determinants of mental health in rural areas. Eur J Public Health. 2011, 21 (2): 197-203. 10.1093/eurpub/ckq064.CrossRefPubMed
26.
go back to reference Glover G, Arts G, Wooff D: A needs index for mental health care in England based on updatable data. Soc Psychiatry Psychiatr Epidemiol. 2004, 39 (9): 730-8. 10.1007/s00127-004-0779-8.CrossRefPubMed Glover G, Arts G, Wooff D: A needs index for mental health care in England based on updatable data. Soc Psychiatry Psychiatr Epidemiol. 2004, 39 (9): 730-8. 10.1007/s00127-004-0779-8.CrossRefPubMed
27.
go back to reference Gibson-White A, Majeed A: The Wellcome Trust Report: moving forward the use of general practice electronic patient records for research. Inform Prim Care. 2009, 17 (3): 141-2.PubMed Gibson-White A, Majeed A: The Wellcome Trust Report: moving forward the use of general practice electronic patient records for research. Inform Prim Care. 2009, 17 (3): 141-2.PubMed
28.
go back to reference Treweek S, Pearson E, Smith N, Neville R, Sargeant P, Boswell B, Sullivan F: Desktop software to identify patients eligible for recruitment into a clinical trial: using SARMA to recruit to the ROAD feasibility trial. Inform Prim Care. 2010, 18 (1): 51-8.PubMed Treweek S, Pearson E, Smith N, Neville R, Sargeant P, Boswell B, Sullivan F: Desktop software to identify patients eligible for recruitment into a clinical trial: using SARMA to recruit to the ROAD feasibility trial. Inform Prim Care. 2010, 18 (1): 51-8.PubMed
29.
go back to reference de Lusignan S, Chan T, Theadom A, Dhoul N: The roles of policy and professionalism in the protection of processed clinical data: a literature review. Int J Med Inform. 2007, 76 (4): 261-8. 10.1016/j.ijmedinf.2005.11.003.CrossRefPubMed de Lusignan S, Chan T, Theadom A, Dhoul N: The roles of policy and professionalism in the protection of processed clinical data: a literature review. Int J Med Inform. 2007, 76 (4): 261-8. 10.1016/j.ijmedinf.2005.11.003.CrossRefPubMed
30.
go back to reference Hull SA, Rivas C, Bobby J, Boomla K, Robson J: Hospital data may be more accurate than census data in estimating the ethnic composition of general practice populations. Inform Prim Care. 2009, 17 (2): 67-78.PubMed Hull SA, Rivas C, Bobby J, Boomla K, Robson J: Hospital data may be more accurate than census data in estimating the ethnic composition of general practice populations. Inform Prim Care. 2009, 17 (2): 67-78.PubMed
31.
go back to reference Grannis S, Overhage J, McDonald C: Analysis of Identifier Performance using a Deterministic Linkage Algorithm. AMIA 2002 Annual Symposium Proceedings. 2002, 305-9. Grannis S, Overhage J, McDonald C: Analysis of Identifier Performance using a Deterministic Linkage Algorithm. AMIA 2002 Annual Symposium Proceedings. 2002, 305-9.
32.
go back to reference Durham E, Xue Y, Kantarcioglu M, Malin B: Private medical record linkage with approximate matching. AMIA Annu Symp Proc. 2010, 2010: 182-6.PubMedPubMedCentral Durham E, Xue Y, Kantarcioglu M, Malin B: Private medical record linkage with approximate matching. AMIA Annu Symp Proc. 2010, 2010: 182-6.PubMedPubMedCentral
33.
go back to reference Tromp M, Ravelli AC, Bonsel GJ, Hasman A, Reitsma JB: Results from simulated data sets: probabilistic record linkage outperforms deterministic record linkage. J Clin Epidemiol. 2011, 64 (5): 565-72. 10.1016/j.jclinepi.2010.05.008.CrossRefPubMed Tromp M, Ravelli AC, Bonsel GJ, Hasman A, Reitsma JB: Results from simulated data sets: probabilistic record linkage outperforms deterministic record linkage. J Clin Epidemiol. 2011, 64 (5): 565-72. 10.1016/j.jclinepi.2010.05.008.CrossRefPubMed
34.
go back to reference de Lusignan S, van Weel C: The use of routinely collected computer data for research in primary care: opportunities and challenges. Family Practice. 2006, 23 (2): 253-63.CrossRefPubMed de Lusignan S, van Weel C: The use of routinely collected computer data for research in primary care: opportunities and challenges. Family Practice. 2006, 23 (2): 253-63.CrossRefPubMed
35.
go back to reference Chan T, van Vlymen J, Dhoul N, de Lusignan S: Using routinely collected data to evaluate a leaflet campaign to increase the presentation of people with memory problems to general practice: a locality based controlled study. Inform Prim Care. 2010, 18 (3): 189-96.PubMed Chan T, van Vlymen J, Dhoul N, de Lusignan S: Using routinely collected data to evaluate a leaflet campaign to increase the presentation of people with memory problems to general practice: a locality based controlled study. Inform Prim Care. 2010, 18 (3): 189-96.PubMed
36.
go back to reference de Lusignan S, Wells SE, Hague NJ, Thiru K: Managers see the problems associated with coding clinical data as a technical issue whilst clinicians also see cultural barriers. Methods Inf Med. 2003, 42 (4): 416-22.PubMed de Lusignan S, Wells SE, Hague NJ, Thiru K: Managers see the problems associated with coding clinical data as a technical issue whilst clinicians also see cultural barriers. Methods Inf Med. 2003, 42 (4): 416-22.PubMed
Metadata
Title
Detecting referral and selection bias by the anonymous linkage of practice, hospital and clinic data using Secure and Private Record Linkage (SAPREL): case study from the evaluation of the Improved Access to Psychological Therapy (IAPT) service
Authors
Simon de Lusignan
Rob Navarro
Tom Chan
Glenys Parry
Kim Dent-Brown
Tony Kendrick
Publication date
01-12-2011
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2011
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/1472-6947-11-61

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