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Research Interests

The Clinical Informatics research group I lead has raised over £5 million in funding and published over 200 peer reviewed papers and articles.   For example, we have recently completed a large cluster randomised trial (QICKD trial); evaluated the impact of psychological therapies on the health system using linked hospital, clinic and practice data; and also the world’s largest series of multi-channel consultation videos using the ALFA toolkit.  My research focuses on how routinely collected data can be used for quality improvement and how IT is best used at the point of care.  My quality improvement work has been in: cardiovascular disease, chronic kidney disease, diabetes, mental health dermatology, and osteoporosis.  I have led the development of on-line information sources for primary care but latterly focussed more on the evaluation of how these and electronic patient record (EPR) systems might best be incorporated into clinical practice.  I have been active in developing metrics for improving the quality of management of chronic kidney disease, diabetes and mental health.

Research Collaborations

I have important collaborations within the Faculty, wider University, regionally, nationally and internationally.

Faculty collaborations

There are strong research links and collaborations with Professor Graham Cookson (health economics).  There are also a wide range of joint applications other research links across the faculty.

University collaborations

The major links across the University are with the Faculty of Health and Medical Sciences - Professor Tom Quinn (Strategy); Prof David Lewis (vaccine research and PI for the BioVacSafe consortium); Professor Paul Krause (Computing); Professor Chris Fife-Schaw  (Psychology, and PI for the GHT2000 exercise to treat hypertension trial); and we have a number of studies running with the Surrey Clinical Research Centre. 

Regional collaborations

We have a large number of regional collaborations.  These include AT Medics with whom we have a Knowledge Transfer Partnership (KTP)  and a joint research group SATIRE (Surrey AT Medics Research and Enterprise).  We have strong collaborations with Imperial where we are collaborating in the LOLIPOP cohort, SABRE cohort, and diabetes data quality in the BIOBANK project. I also have a small role with the PCRN southeast and have set up a research group with the local NHS: Guildford and Waverley Clinical Commissioning Group as well as being a member of diabetes, primary care and older persons clinical academic groups.  I also have links and collaboration with the hepatologists at Frimley Park Hospital.  

I retain research links with St. George's, where I hold an honorary chair. I also hold an honorary chair at University of Sussex, at Brighton and Sussex Medical School.  

National collaborations

I have my strongest national collaboration with the Royal College of General Practitioners (RCGP).  I am their representative on the National General Practice Extraction Service (GPES) Independent Advisory Group (IAG) - the group that independently reviews the need to extract routine data for health service management.  I am also the Medical Director of the RCGP Research and Surveillance Centre The RSC is a key national surveillance centre for spotting outbreaks of disease, particularly flu and flu-like illnesses.  

International collaborations   

My principal international collaborations are with colleagues in Australia - Professor Teng Siaw-Liaw, and A/Professor Chris Pearce;  Canada A/Professor Amanda Terry; and with colleagues in Sao Paulo University in Brazil.

I am also the Chair of the European Federation for Medical Informatics (EFMI) and International Medical Informatics Association (IMIA) Primary Health Care Informatics Working Group chairs.   

Teaching

Teaching duties

I have a strategic role as head of department to develop our teaching portfolio.  My main teaching duties are supervision of students and to support two short courses (SISS and SWiSS - The Surrey Informatics Summer School and our Surrey Winter Statistical School).

Academic F2 (Foundation programme second year doctors)

I supervise academic F2 doctors in their second year or qualification while they undertake a four month academic attachment.  Nearly all of these doctors have produced high grade peer review publications during these attachments.  We are hopeful that this post might expand in future.

Masters Dissertation students

I supervise Masters dissertation students.  I welcome enquiries from students early in the course about research opportunities for their dissertations.

Doctoral students - MD and PhD

I encourage applications, visits to the Department and attendance on our short courses, from ambitious students looking to work in our domain. 

Knowledge Transfer Fellow

I jointly supervise a Knowledge Transfer Fellow, who is part of a KTP with AT Medics - a leading supplier of primary health care services in London.

Departmental Duties

Head of Department of Health Care Management and Policy

We have a strategy to grow our Department.  We are looking to attract the highest quality researchers and teachers to come and work with our excellent team here at Surrey.  In research we have an exciting blend of research, but are looking to grow to the critical mass where we can attract programme, unit and centre funding.  In enterprise we are looking to form alliances with leading providers of health care and organisations that support them.  We have an excellent MSc in Health Care Management - but would like to attract more students, we also have scope to accept more high quality ambitious doctoral students.  We have started two short courses - SISS - A Summer School in Informatics (first week of July) and SWiSS - Surrey Winter Statistical School.  We would like to increase the scope and range of short courses on offer.

Academic Health Sciences Network (AHSN)

I support the AHSN and two of the Clinical Academic Groups (CAG) within it (Diabetes, Primary Care and Older People).   

University health and medical strategy committees

I will continue to represent the Department and where the Dean sees appropriate the Faculty on University health and medical strategy committees.

Clinical Informatics and Health Outcomes Research Group

I will continue to lead this group in collaboration

Affiliations

  • Fellow of Royal College of General Practitioners - FRCGP 
  • Fellow of the British Computer Society - Chartered Information Technology Professional - FBCS CITP
  • Fellow of the Higher Education Academy - FHEA
  • Member of the Society of Academic Primary Care
  • Visiting Professor - St. George's - University of London
  • Visiting Professor - Sussex University / Brighton and Sussex Medical School
  • Chair Primary Care Working Group and UK representative to European Federation for Medical Informatics (EFMI)
  • Chair Primary Health Care Working Group International Medical Informatics Association (IMIA)
  • General Practitioner (Partner) Prof Simon de Lusignan & Partners, Woodbridge Hill Surgery, Guildford.

Contact Me

E-mail:
Phone: 01483 68 3089

Find me on campus
Room: 76 AP 02


My office hours

My usual days at University are:

Tuesday, Wednesday early a.m., Friday and alternate Monday and Thursday.

I can be contacted by email or via the Department Administrator.

Publications

Highlights

  • McGovern AP, Rafiq M, Munro NM, Butler LI, Jones DR, Jones S, Hinchcliffe R, de Lusignan S. (2013) 'Peripheral Sensory Neuropathy is an Important Indicator of Mortality in People with Diabetes'. Chicago, IL, USA: American Diabetes Association 73rd Scientific Sessions
  • de Lusignan S, Gallagher H, Jones S, Chan T, van Vlymen J, Tahir A, Thomas N, Jain N, Dmitrieva O, Rafi I, McGovern A, Harris K. (2013) 'Audit-based education lowers systolic blood pressure in chronic kidney disease: the Quality Improvement in CKD (QICKD) trial results.'. International Society of Nephrology Kidney International,

    Abstract

    Strict control of systolic blood pressure is known to slow progression of chronic kidney disease (CKD). Here we compared audit-based education (ABE) to guidelines and prompts or usual practice in lowering systolic blood pressure in people with CKD. This 2-year cluster randomized trial included 93 volunteer general practices randomized into three arms with 30 ABE practices, 32 with guidelines and prompts, and 31 usual practices. An intervention effect on the primary outcome, systolic blood pressure, was calculated using a multilevel model to predict changes after the intervention. The prevalence of CKD was 7.29% (41,183 of 565,016 patients) with all cardiovascular comorbidities more common in those with CKD. Our models showed that the systolic blood pressure was significantly lowered by 2.41 mm Hg (CI 0.59–4.29 mm Hg), in the ABE practices with an odds ratio of achieving at least a 5 mm Hg reduction in systolic blood pressure of 1.24 (CI 1.05–1.45). Practices exposed to guidelines and prompts produced no significant change compared to usual practice. Male gender, ABE, ischemic heart disease, and congestive heart failure were independently associated with a greater lowering of systolic blood pressure but the converse applied to hypertension and age over 75 years. There were no reports of harm. Thus, individuals receiving ABE are more likely to achieve a lower blood pressure than those receiving only usual practice. The findings should be interpreted with caution due to the wide confidence intervals.

  • De Lusignan S, Chan T, Tejerina Arreal MC, Parry G, Dent-Brown K, Kendrick T. (2013) 'Referral for psychological therapy of people with long term conditions improves adherence to antidepressants and reduces emergency department attendance: Controlled before and after study'. Behaviour Research and Therapy, 51 (7), pp. 377-385.
  • Kumarapeli P, de Lusignan S. (2012) 'Using the computer in the clinical consultation; setting the stage, reviewing, recording, and taking actions: multi-channel video study.'. J Am Med Inform Assoc,
  • Woodman J, Freemantle N, Allister J, de Lusignan S, Gilbert R, Petersen I. (2012) 'Variation in Recorded Child Maltreatment Concerns in UK Primary Care Records: A Cohort Study Using The Health Improvement Network (THIN) Database'. Public Library of Science PLoS One, 7 (11)
  • de Lusignan S, Chan T, Parry G, Dent-Brown K, Kendrick T. (2011) 'Referral to a new psychological therapy service is associated with reduced utilisation of healthcare and sickness absence by people with common mental health problems: A before and after comparison'. Journal of Epidemiology and Community Health,
  • De Lusignan S, Michalakidis G, Vicente MT, Pearce C, Shaw NT, Liaw S-T, Bainbridge M. (2011) 'What are the barriers to conducting international research using routinely collected primary care data?'. Studies in Health Technology and Informatics, 165, pp. 135-140.
  • de Lusignan S, Tomson C, Harris K, van Vlymen J, Gallagher H. (2011) 'Creatinine fluctuation has a greater effect than the formula to estimate glomerular filtration rate on the prevalence of chronic kidney disease.'. Karger Nephron Clinical Practice, Switzerland: 117 (3), pp. c213-c224.

    Abstract

    Cases of chronic kidney disease (CKD) are defined by the estimated glomerular filtration rate (eGFR), calculated using the Modified Diet in Renal Disease (MDRD) or, more recently, the CKD Epidemiology Collaboration (CKD-EPI) formula. This study set out to promote a systematic approach to reporting CKD prevalence. DESIGN, SETTING, PARTICIPANTS AND MEASUREMENTS: The study explores the impact of the way in which eGFR is calculated on the prevalence of CKD. We took into account whether including (1) ethnicity, (2) using a single eGFR, (3) using more than 1 eGFR value or (4) using the CKD-EPI formula affected the estimates of prevalence.

  • Phillips CB, Pearce CM, Hall S, Travaglia J, de Lusignan S, Love T, Kljakovic M. (2010) 'Can clinical governance deliver quality improvement in Australian general practice and primary care? A systematic review of the evidence'. AUSTRALASIAN MED PUBL CO LTD MEDICAL JOURNAL OF AUSTRALIA, 193 (10), pp. 602-607.
  • Debar S, Kumarapeli P, Kaski JC, de Lusignan S. (2010) 'Addressing modifiable risk factors for coronary heart disease in primary care: an evidence-base lost in translation.'. Fam Pract, England: 27 (4), pp. 370-378.
  • de Lusignan S, Khunti K, Belsey J, Hattersley A, van Vlymen J, Gallagher H, Millett C, Hague NJ, Tomson C, Harris K, Majeed A. (2010) 'A method of identifying and correcting miscoding, misclassification and misdiagnosis in diabetes: a pilot and validation study of routinely collected data.'. Diabet Med, England: 27 (2), pp. 203-209.
  • de Lusignan S, Krause P. (2010) 'The Hayes principles: learning from the national pilot of information technology and core generalisable theory in informatics.'. Inform Prim Care, England: 18 (2), pp. 73-77.
  • de Lusignan S, Gallagher H, Chan T, Thomas N, van Vlymen J, Nation M, Jain N, Tahir A, du Bois E, Crinson I, Hague N, Reid F, Harris K. (2009) 'The QICKD study protocol: a cluster randomised trial to compare quality improvement interventions to lower systolic BP in chronic kidney disease (CKD) in primary care.'. BioMed Central Implementation Science, England: 4 (39)

    Abstract

    BACKGROUND: Chronic kidney disease (CKD) is a relatively newly recognised but common long-term condition affecting 5 to 10% of the population. Effective management of CKD, with emphasis on strict blood pressure (BP) control, reduces cardiovascular risk and slows the progression of CKD. There is currently an unprecedented rise in referral to specialist renal services, which are often located in tertiary centres, inconvenient for patients, and wasteful of resources. National and international CKD guidelines include quality targets for primary care. However, there have been no rigorous evaluations of strategies to implement these guidelines. This study aims to test whether quality improvement interventions improve primary care management of elevated BP in CKD, reduce cardiovascular risk, and slow renal disease progression DESIGN: Cluster randomised controlled trial (CRT) METHODS: This three-armed CRT compares two well-established quality improvement interventions with usual practice. The two interventions comprise: provision of clinical practice guidelines with prompts and audit-based education. The study population will be all individuals with CKD from general practices in eight localities across England. Randomisation will take place at the level of the general practices. The intended sample (three arms of 25 practices) powers the study to detect a 3 mmHg difference in systolic BP between the different quality improvement interventions. An additional 10 practices per arm will receive a questionnaire to measure any change in confidence in managing CKD. Follow up will take place over two years. Outcomes will be measured using anonymised routinely collected data extracted from practice computer systems. Our primary outcome measure will be reduction of systolic BP in people with CKD and hypertension at two years. Secondary outcomes will include biomedical outcomes and markers of quality, including practitioner confidence in managing CKD. A small group of practices (n = 4) will take part in an in-depth process evaluation. We will use time series data to examine the natural history of CKD in the community. Finally, we will conduct an economic evaluation based on a comparison of the cost effectiveness of each intervention. CLINICAL TRIALS REGISTRATION: ISRCTN56023731. ClinicalTrials.gov identifier.

Journal articles

  • Mold F, de Lusignan S, Sheikh A, Majeed A, Wyatt JC, Quinn T, Cavill M, Gronlund TA, Franco C, Chauhan U, Blakey H, Kataria N, Barker F, Ellis B, Koczan P, Avanitis TA, McCarthy M, Jones S, Rafi I. (2015) 'Patients’ online access to their electronic health records and linked online services: a systematic review'. British Journal of General Practice,
    [ Status: In preparation ]
  • Alharbi NS, Almutari R, Jones S, Al-Daghr N, Khunti K, de Lusignan S. (2014) 'Trends in the prevalence of type 2 diabetes mellitus and obesity in the Arabian Gulf States: systematic review and meta-analysis'. Diabetes Research and Clinical Practice,
  • Woodman J, Rafi I, de Lusignan S. (2014) 'Child maltreatment: time to rethink the role of general practice.'. Br J Gen Pract, England: 64 (626), pp. 444-445.
  • Brownrigg JR, de Lusignan S, McGovern A, Hughes C, Thompson MM, Ray KK, Hinchliffe RJ. (2014) 'Peripheral neuropathy and the risk of cardiovascular events in type 2 diabetes mellitus.'. Heart, England: 100 (23), pp. 1837-1843.
  • McGovern A, van Vlymen J, Liyanage L, de Lusignan S, Jones S, Woodman J, Gibert R, Allister J, Rafi I. (2014) 'A simple clinical coding strategy to improve recording of child maltreatment concerns: an audit study'. British Journal of General Practice, 625, pp. 389-390.
  • Rafiq M, McGovern A, Jones S, De Lusignan S, Harris K, Tomson C, Gallagher H. (2014) 'Falls in the elderly were predicted opportunistically using a decision tree and systematically using a database-driven screening tool'. Journal of Clinical Epidemiology, 67 (8), pp. 877-886.
  • Munro N, Bewick M, Jones S, de Lusignan S. (2014) 'http://careers.bmj.com/careers/advice/view-article.html?id=20018623'. BMJ Careers BMJ Careers, Online
  • Barker F, Mackenzie E, Elliott L, Jones S, de Lusignan S. (2014) 'Interventions to improve hearing aid use in adult auditory rehabilitation.'. Cochrane Database Syst Rev, England: 7
  • Pebody RG, Green HK, Andrews N, Zhao H, Boddington N, Bawa Z, Singh N, Sunderland A, Letley L, Ellis J, Elliot AJ, Donati M, Smith GE, Zambon M, Durnall H, de Lusignan S. (2014) 'Uptake and impact of a new live attenuated influenza vaccine programme in England: Early results of a pilot in primary school-age children, 2013/14 influenza season'. Eurosurveillance, 19 (22)
  • Rafiq M, McGovern A, Jones S, Harris K, Tomson C, Gallagher H, de Lusignan S. (2014) 'Falls in the elderly were predicted opportunistically using a decision tree and systematically using a database-driven screening tool.'. J Clin Epidemiol,
  • McGovern A, Butler L, Jones S, Vlymen VJ, Sadek K, Munro N, Carr H, de Lusignan S. (2014) 'Diabetes screening after gestational diabetes in England: A quantitative retrospective cohort study.'. Royal College of General Practitioners British Journal of General Practice,, 64, pp. e17-e23.
  • Liyanage H, de Lusignan S, Liaw ST, Kuziemsky CE, Mold F, Krause P, Fleming D, Jones S. (2014) 'Big Data Usage Patterns in the Health Care Domain: A Use Case Driven Approach Applied to the Assessment of Vaccination Benefits and Risks. Contribution of the IMIA Primary Healthcare Working Group.'. Yearb Med Inform, Germany: 9 (1), pp. 27-35.
  • Nichols JA, Grob P, de Lusignan S, Kite W, Williams P. (2014) 'Genetic test to stop smoking (GeTSS) trial protocol: randomised controlled trial of a genetic test (Respiragene) and Auckland formula to assess lung cancer risk.'. BMC Pulm Med, England: 14
  • de Lusignan S, Sun B, Pearce C, Farmer C, Steven P, Jones S. (2014) 'Coding errors in an analysis of the impact of pay-for-performance on the care for long-term cardiovascular disease: a case study.'. Inform Prim Care, England: 21 (2), pp. 92-101.
  • Tahir M, Hassan S, de Lusignan S, Shaheen L, Chan T, Dmitrieva O. (2014) 'Development of a questionnaire to evaluate practitioners' confidence and knowledge in primary care in managing chronic kidney disease.'. BMC Nephrol, England: 15
  • Barrett D, Liaw ST, de Lusignan S. (2014) 'Unravelling the tangled taxonomies of health informatics.'. Inform Prim Care, England: 21 (3), pp. 152-155.
  • Seidu S, Davies MJ, Mostafa S, Khunti K, de Lusignan S. (2014) 'Prevalence and characteristics in coding, classification and diagnosis of diabetes in primary care'. Postgraduate Medical Journal, 90 (1059), pp. 13-17.
  • de Lusignan S. (2014) 'Making sense of taxonomies in health informatics.'. Inform Prim Care, England: 21 (3), pp. 1-5.
  • de Lusignan S. (2014) 'Effective pseudonymisation and explicit statements of public interest to ensure the benefits of sharing health data for research, quality improvement and health service management outweigh the risks.'. Inform Prim Care, England: 21 (2), pp. 61-63.
  • Barker F, de Lusignan S, Baguley D, Gagne JP. (2013) 'An evaluation of audiology service improvement documentation in England using the chronic care model and content analysis.'. Int J Audiol,
  • Liaw S-T, Taggart J, Yu H, de Lusignan S. (2013) 'Data extraction from electronic health records - existing tools may be unreliable and potentially unsafe'. Australian Family Physician, 42 (11), pp. 820-823.
  • McGovern AP, Rusholme B, Jones S, van Vlyman JN, Liyanage H, Gallagher H, Tomson CR, Khunti K, Harris K, de Lusignan S. (2013) 'Association of chronic kidney disease (CKD) and failure to monitor renal function with adverse outcomes in people with diabetes: A primary care cohort study.'. BMC Nephrol, 14 (1)
  • McGovern A, Rusholme B, Jones S, van Vlyman JV, Liyanage H, Gallagher H, Tomson CR, Khunti K, Harris K, de Lusignan S. (2013) 'Association of chronic kidney disease (CKD) and failure to monitor renal function with adverse outcomes in people with diabetes: A primary care cohort study'. 14 Edition. BMC Nephrology, 198
  • McGovern AP, de Lusignan S, van Vlymen J, Liyanage H, Tomson CR, Gallagher H, Rafiq M, Jones S. (2013) 'Serum Phosphate as a Risk Factor for Cardiovascular Events in People with and without Chronic Kidney Disease: A Large Community'. PLOS One PLoS One,
  • Pearce CM, De Lusignan S, Phillips C, Hall S, Travaglia J. (2013) 'The computerized medical record as a tool for clinical governance in australian primary care'. Journal of Medical Internet Research, 15 (8)
  • De Lusignan S, Morris L, Hassey A, Rafi I. (2013) 'Giving patients online access to their records: Opportunities, challenges, and scope for service transformation'. British Journal of General Practice, 63 (611), pp. 286-287.
  • de Lusignan S, Gallagher H, Jones S, Chan T, van Vlymen J, Tahir A, Thomas N, Jain N, Dmitrieva O, Rafi I, McGovern A, Harris K. (2013) 'Audit-based education lowers systolic blood pressure in chronic kidney disease: the Quality Improvement in CKD (QICKD) trial results.'. International Society of Nephrology Kidney International,

    Abstract

    Strict control of systolic blood pressure is known to slow progression of chronic kidney disease (CKD). Here we compared audit-based education (ABE) to guidelines and prompts or usual practice in lowering systolic blood pressure in people with CKD. This 2-year cluster randomized trial included 93 volunteer general practices randomized into three arms with 30 ABE practices, 32 with guidelines and prompts, and 31 usual practices. An intervention effect on the primary outcome, systolic blood pressure, was calculated using a multilevel model to predict changes after the intervention. The prevalence of CKD was 7.29% (41,183 of 565,016 patients) with all cardiovascular comorbidities more common in those with CKD. Our models showed that the systolic blood pressure was significantly lowered by 2.41 mm Hg (CI 0.59–4.29 mm Hg), in the ABE practices with an odds ratio of achieving at least a 5 mm Hg reduction in systolic blood pressure of 1.24 (CI 1.05–1.45). Practices exposed to guidelines and prompts produced no significant change compared to usual practice. Male gender, ABE, ischemic heart disease, and congestive heart failure were independently associated with a greater lowering of systolic blood pressure but the converse applied to hypertension and age over 75 years. There were no reports of harm. Thus, individuals receiving ABE are more likely to achieve a lower blood pressure than those receiving only usual practice. The findings should be interpreted with caution due to the wide confidence intervals.

  • de Lusignana S, Gallagher H, Jones S, Chan T, van Vlymen J, Tahir A, Thomas N, Jain N, Dmitrieva O, Rafi I, McGovern A, Harris K. (2013) 'Audit-based education lowers systolic blood pressure in chronic kidney disease: the Quality Improvement in CKD (QICKD) trial results.'. Kidney Int,
  • De Lusignan S, Chan T, Tejerina Arreal MC, Parry G, Dent-Brown K, Kendrick T. (2013) 'Referral for psychological therapy of people with long term conditions improves adherence to antidepressants and reduces emergency department attendance: Controlled before and after study'. Behaviour Research and Therapy, 51 (7), pp. 377-385.
  • Mcgovern AP, Rusholme B, de Lusignan S, van Vlymen J, Jones S. (2013) 'The interrelationship between hypertension, chronic kidney disease and proteinuria in people with diabetes: a cohort study'. WILEY-BLACKWELL DIABETIC MEDICINE, 30 (Supplement S1), pp. 28-28.
  • Seidu S, Davies M, Mostafa SA, de Lusignan S, Khunti K. (2013) 'Prevalence and characteristics in coding, classification and diagnosis of diabetes in primary care'. WILEY-BLACKWELL DIABETIC MEDICINE, 30 (Supplement S1), pp. 190-190.
  • de Lusignan S. (2013) 'Informatics as tool for quality improvement: rapid implementation of guidance for the management of chronic kidney disease in England as an exemplar.'. Healthc Inform Res, Korea (South): 19 (1), pp. 9-15.
  • Butler L, McGovern AP, de Lusignan S, Jones S. (2013) 'Postnatal monitoring for diabetes following gestational diabetes in the UK'. WILEY-BLACKWELL DIABETIC MEDICINE, 30 (Supplement S1), pp. 171-171.
  • Mcgovern AP, Rusholme B, de Lusignan S, van Vlymen J, Jones S. (2013) 'People with diabetes and unmonitored renal function are at increased risk of an adverse outcome: a cohort study'. WILEY-BLACKWELL DIABETIC MEDICINE, 30 (Supplement S1), pp. 28-29.
  • Barker F, Mackenzie E, Elliott L, Jones S, de Lusignan S. (2013) 'Interventions to improve hearing aid use in adult auditory rehabilitation'. The Cohcrane Libaray,
  • Kearns B, Gallagher H, de Lusignan S. (2013) 'Predicting the prevalence of chronic kidney disease in the English population: a cross-sectional study.'. BMC Nephrol, 14 (1)

    Abstract

    ABSTRACT: BACKGROUND: There is concern that not all cases of chronic kidney disease (CKD) are known to general practitioners, leading to an underestimate of its true prevalence. We carried out this study to develop a model to predict the prevalence of CKD using a large English primary care dataset which includes previously undiagnosed cases of CKD. METHODS: Cross-sectional analysis of data from the Quality Improvement in CKD trial, a representative sample of 743 935 adults in England aged 18 and over. We created multivariable logistic regression models to identify important predictive factors. RESULTS: A prevalence of 6.76% was recorded in our sample, compared to a national prevalence of 4.3%. Increasing age, female gender and cardiovascular disease were associated with a significantly increased prevalence of CKD (p < 0.001 for all). Age had a complex association with CKD. Cardiovascular disease was a stronger predictive factor in younger than in older patients. For example, hypertension has an odds ratio of 2.02 amongst patients above average and an odds ratio of 3.91 amongst patients below average age. CONCLUSION: In England many cases of CKD remain undiagnosed. It is possible to use the results of this study to identify areas with high levels of undiagnosed CKD and groups at particular risk of having CKD.Trial registration: Current Controlled Trials ISRCTN56023731. Note that this study reports the results of a cross-sectional analysis of data from this trial.

  • Liaw ST, Rahimi A, Jalaludin B, Taggart J, Dennis S, Ray P, Talaei-Khoei A, de Lusignan S, Yeo AET. (2013) 'Corrigendum to "Towards an ontology for data quality in integrated chronic disease management: A realist review of the literature" [Int. J. Med. Inform. 82 (2013) 10-24]'. International Journal of Medical Informatics, 82 (2), pp. 139-139.
  • Liyanage H, Liaw ST, Kuziemsky C, Terry AL, Jones S, Soler JK, de Lusignan S. (2013) 'The Evidence-base for Using Ontologies and Semantic Integration Methodologies to Support Integrated Chronic Disease Management in Primary and Ambulatory Care: Realist Review. Contribution of the IMIA Primary Health Care Informatics WG.'. 8 Edition. Yearbook of Medical Informtics, 2013, 1, pp. 147-154.
  • Liaw ST, Rahimi A, Ray P, Jalaludin B, Taggart J, Dennis S, Talaei-Khoei A, de Lusignan S, Yeo AET. (2013) 'Towards an ontology for data quality in integrated chronic disease management: A realist review of the literature'. International Journal of Medical Informatics, 82 (1), pp. 10-24.
  • Halter M, Drennan V, Chattopadhyay K, Carneiro W, Yiallouros J, de Lusignan S, Gage H, Gabe J, Grant R. (2013) 'The contribution of Physician Assistants in primary care: a systematic review.'. BMC Health Serv Res, England: 13
  • Dmitrieva O, De Lusignan S, Desombre T, Macdougall IC, Gallagher H, Tomson C, Harris K, Goldsmith D. (2013) 'Association of anaemia in primary care patients with chronic kidney disease: Cross sectional study of quality improvement in chronic kidney disease (QICKD) trial data'. BioMed Cental BMC Nephrology, 14 (1)

    Abstract

    Background: Anaemia is a known risk factor for cardiovascular disease and treating anaemia in chronic kidney disease (CKD) may improve outcomes. However, little is known about the scope to improve primary care management of anaemia in CKD. Methods. An observational study (N = 1,099,292) with a nationally representative sample using anonymised routine primary care data from 127 Quality Improvement in CKD trial practices (ISRCTN5631023731). We explored variables associated with anaemia in CKD: eGFR, haemoglobin (Hb), mean corpuscular volume (MCV), iron status, cardiovascular comorbidities, and use of therapy which associated with gastrointestinal bleeding, oral iron and deprivation score. We developed a linear regression model to identify variables amenable to improved primary care management. Results: The prevalence of Stage 3-5 CKD was 6.76%. Hb was lower in CKD (13.2 g/dl) than without (13.7 g/dl). 22.2% of people with CKD had World Health Organization defined anaemia; 8.6% had Hb ≤ 11 g/dl; 3% Hb ≤ 10 g/dl; and 1% Hb ≤ 9 g/dl. Normocytic anaemia was present in 80.5% with Hb ≤ 11; 72.7% with Hb ≤ 10 g/dl; and 67.6% with Hb ≤ 9 g/dl; microcytic anaemia in 13.4% with Hb ≤ 11 g/dl; 20.8% with Hb ≤ 10 g/dl; and 24.9% where Hb ≤ 9 g/dl. 82.7% of people with microcytic and 58.8% with normocytic anaemia (Hb ≤ 11 g/dl) had a low ferritin (<100ug/mL). Hypertension (67.2% vs. 54%) and diabetes (30.7% vs. 15.4%) were more prevalent in CKD and anaemia; 61% had been prescribed aspirin; 73% non-steroidal anti-inflammatory drugs (NSAIDs); 14.1% warfarin 12.4% clopidogrel; and 53.1% aspirin and NSAID. 56.3% of people with CKD and anaemia had been prescribed oral iron. The main limitations of the study are that routine data are inevitably incomplete and definitions of anaemia have not been standardised. Conclusions: Medication review is needed in people with CKD and anaemia prior to considering erythropoietin or parenteral iron. Iron stores may be depleted in over >60% of people with normocytic anaemia. Prescribing oral iron has not corrected anaemia. © 2013 Dmitrieva et al.; licensee BioMed Central Ltd.

  • Liyanage H, Liaw ST, Kuziemsky C, de Lusignan S. (2013) 'Ontologies to improve chronic disease management research and quality improvement studies - a conceptual framework.'. Stud Health Technol Inform, Netherlands: 192, pp. 180-184.
  • de Lusignan S, Pearce C, Munro N. (2013) 'Getting on with your computer is associated with job satisfaction in primary care: entrants to primary care should be assessed for their competency with electronic patient record systems.'. Inform Prim Care, England: 21 (1), pp. i-iii.
  • Rafi I, Chowdhury S, Chan T, Jubber I, Tahir M, de Lusignan S. (2013) 'Improving the management of people with a family history of breast cancer in primary care: before and after study of audit-based education.'. BMC Fam Pract, England: 14

    Abstract

    In England, guidance from National Institute for Clinical Excellence (NICE) states women with a family history of breast cancer presenting to primary care should be reassured or referred.We reviewed the evidence for interventions that might be applied in primary care and conducted an audit of whether low risk women are correctly advised and flagged.

  • Poh N, de Lusignan S, Liyanage H, van Vlymen J, Krause P, Jones S. (2013) 'Agile Exploration of Electronic Health Records with Application to Comparing the Quality of Blood Pressure Control in Pay-for-Performance Targets in a Cross-Sectional Study.'. Stud Health Technol Inform, Netherlands: 192, pp. 82-86.
  • de Lusignan S, Seroussi B. (2013) 'A Comparison of English and French Approaches to Providing Patients Access to Summary Care Records: Scope, Consent, Cost'. IOS Press Studies in Health Technology and Informatics, 186, pp. 61-65.
  • McGovern AP, de Lusignan S, van Vlymen J, Liyanage H, Tomson CR, Gallagher H, Rafiq M, Jones S. (2013) 'Serum Phosphate as a Risk Factor for Cardiovascular Events in People with and without Chronic Kidney Disease: A Large Community Based Cohort Study.'. PLoS One, United States: 8 (9)
  • Liyanage H, Liaw ST, Kuziemsky C, Terry AL, Jones S, Soler JK, de Lusignan S. (2013) 'The Evidence-base for Using Ontologies and Semantic Integration Methodologies to Support Integrated Chronic Disease Management in Primary and Ambulatory Care: Realist Review. Contribution of the IMIA Primary Health Care Informatics WG.'. Yearb Med Inform, Germany: 8 (1), pp. 147-154.
  • Kumarapeli P, de Lusignan S. (2012) 'Using the computer in the clinical consultation; setting the stage, reviewing, recording, and taking actions: multi-channel video study.'. J Am Med Inform Assoc,
  • Woodman J, Freemantle N, Allister J, de Lusignan S, Gilbert R, Petersen I. (2012) 'Variation in Recorded Child Maltreatment Concerns in UK Primary Care Records: A Cohort Study Using The Health Improvement Network (THIN) Database'. Public Library of Science PLoS One, 7 (11)
  • Liaw ST, Rahimi A, Ray P, Taggart J, Dennis S, de Lusignan S, Jalaludin B, Yeo AE, Talaei-Khoei A. (2012) 'Towards an ontology for data quality in integrated chronic disease management: A realist review of the literature.'. Int J Med Inform,
  • Sadek K, Khunti K, de Lusignan S. (2012) 'Classification of Diabetes for Primary Care: A Practical Approach'. SB Communications Group Diabetes & Primary Care, 14 (5, 2012)
  • Stevens PE, de Lusignan S, Farmer CK, Tomson CR. (2012) 'Engaging primary care in CKD initiatives: the UK experience.'. Nephrol Dial Transplant, England: 27 Suppl 3, pp. iii5-iii11.
  • De Lusignan S, Allister J, Rafi I. (2012) 'How do we identify and support maltreated children?'. British Journal of General Practice, 62 (602), pp. 458-459.
  • de Lusignan S, Krause P, Michalakidis G, Tristan Vicente M, Thompson S, Gilchrist M, Sullivan F, van Royen P, Agreus L, Desombre T, Taweel A, Delaney B. (2012) 'Business Process Modelling is an Essential Part of a Requirements Analysis.'. IMIA Yearbook of Medical Informatics 2012,
  • Woodman J, de Lusignan S, Rafi I, Allister J, Gilbert R. (2012) 'GPs' role in safeguarding children'. BMJ PUBLISHING GROUP BRITISH MEDICAL JOURNAL, 345 Article number ARTN e4758
  • Mold F, Ellis B, de Lusignan S, Sheikh A, Wyatt JC, Cavill M, Michalakidis G, Barker F, Majeed A, Quinn T, Koczan P, Avanitis T, Gronlund TA, Franco C, McCarthy M, Renton Z, Chauhan U, Blakey H, Kataria N, Jones S, Rafi I. (2012) 'The provision and impact of online patient access to their electronic health records (EHR) and transactional services on the quality and safety of health care: systematic review protocol'. Radcliffe Informatics In Primary Care, 20 (4), pp. 271-282.
  • Woodman J, Allister J, Rafi I, de Lusignan S, Belsey J, Petersen I, Gilbert R. (2012) 'A simple approach to improve recording of concerns about child maltreatment in primary care records: developing a quality improvement intervention.'. e478 Edition. British Journal of General Practice,
  • Hassan Sadek N, Sadek AR, Tahir A, Khunti K, Desombre T, de Lusignan S. (2012) 'Evaluating tools to support a new practical classification of diabetes: excellent control may represent misdiagnosis and omission from disease registers is associated with worse control.'. Blackwell Publishing Ltd The International Journal of Clinical Practice,
  • de Lusignan S, Woodhams V, Desombre T, Mughal S, Head G, Debar S, Hilton S, Al-Sharifi H. (2012) 'Triumph of hope over experience: learning from interventions to reduce avoidable hospital admissions identified through an Academic Health and Social Care Network'. BioMed Central BMC Health Services Research, 12
  • Dawson I, Senior V, de Lusignan S. (2012) 'Perceptions of risk may explain the discrepancy between patient and clinician-recorded symptoms'. Elsevier Primary Care Respiratory Journal, 21 (2), pp. 124-126.
  • Drennan VM, Chattopadhyay K, Halter M, Brearley S, de Lusignan S, Gabe J, Gage H. (2012) 'Physician assistants in English primary care teams: A survey.'. J Interprof Care,
  • De Lusignan S. (2012) 'Informatics research, practice, theory and history'. Informatics in Primary Care, 19 (3), pp. 125-126.
  • De Lusignan S, Van Vlymen J, Tomson C, Harris K, Gallagher H. (2012) 'Erratum: UK prevalence of chronic kidney disease for the adult population is 6.76% based on two creatinine readings (Nephron - Clinical Practice)'. Nephron - Clinical Practice, 120 (2), pp. 107-107.
  • de Lusignan S, Tomson C, Harris K, van Vlymen J, Gallagher H. (2012) 'UK Prevalence of Chronic Kidney Disease for the Adult Population Is 6.76% Based on Two Creatinine Readings.'. Nephron Clin Pract, 120 (2)
  • Sadek AR, van Vlymen J, Khunti K, de Lusignan S. (2012) 'Automated identification of miscoded and misclassified cases of diabetes from computer records.'. Wiley Diabet Med, 29 (3), pp. 410-414.

    Abstract

    Aims:  To develop a computer processable algorithm, capable of running automated searches of routine data that flag miscoded and misclassified cases of diabetes for subsequent clinical review. Method: Anonymized computer data from the Quality Improvement in Chronic Kidney Disease (QICKD) trial (n = 942 031) were analysed using a binary method to assess the accuracy of data on diabetes diagnosis. Diagnostic codes were processed and stratified into: definite, probable and possible diagnosis of Type 1 or Type 2 diabetes. Diagnostic accuracy was improved by using prescription compatibility and temporally sequenced anthropomorphic and biochemical data. Bayesian false detection rate analysis was used to compare findings with those of an entirely independent and more complex manual sort of the first round QICKD study data (n = 760 588). Results:  The prevalence of definite diagnosis of Type 1 diabetes and Type 2 diabetes were 0.32% and 3.27% respectively when using the binary search method. Up to 35% of Type 1 diabetes and 0.1% of Type 2 diabetes were miscoded or misclassified on the basis of age/BMI and coding. False detection rate analysis demonstrated a close correlation between the new method and the published hand-crafted sort. Both methods had the highest false detection rate values when coding, therapeutic, anthropomorphic and biochemical filters were used (up to 90% for the new and 75% for the hand-crafted search method). Conclusions:  A simple computerized algorithm achieves very similar results to more complex search strategies to identify miscoded and misclassified cases of both Type 1 diabetes and Type 2 diabetes. It has the potential to be used as an automated audit instrument to improve quality of diabetes diagnosis.

  • De Lusignan S, Sadek K, Desombre T, McDonald H, Horsfield P, Sadek NH, Khunti K, Tahir A. (2012) 'Call for consistent coding in diabetes mellitus using the royal college of general practitioners and NHS pragmatic classification of diabetes'. Informatics in Primary Care, 20 (2), pp. 103-113.
  • Gibbings-Isaac D, Iqbal M, Tahir MA, Kumarapeli P, de Lusignan S. (2012) 'The pattern of silent time in the clinical consultation: an observational multichannel video study.'. Fam Pract,
  • Liyanage H, Liaw ST, de Lusignan S. (2012) 'Reporting of Studies Conducted using Observational Routinely Collected Data (RECORD) statement: call for contributions from the clinical informatics community.'. Inform Prim Care, England: 20 (4), pp. 221-224.
  • Appleton A, Sadek K, Dawson IG, de Lusignan S. (2012) 'Clinicians were oblivious to incorrect logging of test dates and the associated risks in an online pathology application: a case study.'. Inform Prim Care, England: 20 (4), pp. 241-247.
  • Leppenwell E, de Lusignan S, Vicente MT, Michalakidis G, Krause P, Thompson S, McGilchrist M, Sullivan F, Desombre T, Taweel A, Delaney B. (2012) 'Developing a survey instrument to assess the readiness of primary care data, genetic and disease registries to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey instrument.'. Inform Prim Care, England: 20 (3), pp. 207-216.
  • de Lusignan S. (2012) 'International informatics research, communication, episodes of care, evaluation and measuring outcomes.'. Inform Prim Care, England: 20 (1), pp. 1-2.
  • de Lusignan S, Cashman J, Poh N, Michalakidis G, Mason A, Desombre T, Krause P. (2012) 'Conducting Requirements Analyses for Research using Routinely Collected Health Data: a Model Driven Approach.'. Stud Health Technol Inform, Netherlands: 180, pp. 1105-1107.
  • Swindells M, de Lusignan S. (2012) 'Lessons from the English National Programme for IT about Structure, Process and Utility.'. Stud Health Technol Inform, Netherlands: 174, pp. 17-22.
  • de Lusignan S, Sadek N, Mulnier H, Tahir A, Russell-Jones D, Khunti K. (2012) 'Miscoding, misclassification and misdiagnosis of diabetes in primary care.'. Wiley Diabet Med, 29 (2), pp. 181-189.

    Abstract

    Aims:  To determine the effectiveness of self-audit tools designed to detect miscoding, misclassification and misdiagnosis of diabetes in primary care. Methods:  We developed six searches to identify people with diabetes with potential classification errors. The search results were automatically ranked from most to least likely to have an underlying problem. Eight practices with a combined population of 72 000 and diabetes prevalence 2.9% (n = 2340) completed audit forms to verify whether additional information within the patients' medical record confirmed or refuted the problems identified. Results:  The searches identified 347 records, mean 42 per practice. Pre-audit 20% (n = 69) had Type 1 diabetes, 70% (n = 241) had Type 2 diabetes, 9% (n = 30) had vague codes that were hard to classify, 2% (n = 6) were not coded and one person was labelled as having gestational diabetes. Of records, 39.2% (n = 136) had important errors: 10% (n = 35) had coding errors; 12.1% (42) were misclassified; and 17.0% (59) misdiagnosed as having diabetes. Thirty-two per cent (n = 22) of people with Type 2 diabetes (n = 69) were misclassified as having Type 1 diabetes; 20% (n = 48) of people with Type 2 diabetes (n = 241) did not have diabetes; of the 30 patients with vague diagnostic terms, 50% had Type 2 diabetes, 20% had Type 1 diabetes and 20% did not have diabetes. Examples of misdiagnosis were found in all practices, misclassification in seven and miscoding in six. Conclusions:  Volunteer practices successfully used these self-audit tools. Approximately 40% of patients identified by computer searches (5.8% of people with diabetes) had errors; misdiagnosis is commonest, misclassification may affect treatment options and miscoding in omission from disease registers and the potential for reduced quality of care.

  • de Lusignan S. (2012) 'The health information ecosystem, technology to support more effective hospital discharge, data quality enables prediction of outcomes, and supporting better decision making.'. Inform Prim Care, England: 20 (2), pp. 77-79.
  • de Lusignan S. (2012) 'Coding the present problem.'. Inform Prim Care, England: 20 (3), pp. 147-149.
  • Alsanjari ON, de Lusignan S, van Vlymen J, Gallagher H, Millett C, Harris K, Majeed A. (2012) 'Trends and transient change in end-digit preference in blood pressure recording: studies of sequential and longitudinal collected primary care data.'. Int J Clin Pract, England: 66 (1), pp. 37-43.
  • de Lusignan S. (2012) 'Time for research networks to be trained in informatics and based within informatics centres.'. Inform Prim Care, England: 20 (1), pp. 3-5.
  • Dmitrieva O, Michalakidis G, Mason A, Jones S, Chan T, de Lusignan S. (2012) 'Consistent Data Recording across a Health System and Web-Enablement Allow Service Quality Comparisons: Online Data for Commissioning Dermatology Services.'. Stud Health Technol Inform, Netherlands: 174, pp. 84-88.
  • Liyanage H, Liaw ST, de Lusignan S. (2012) 'Accelerating the development of an information ecosystem in health care, by stimulating the growth of safe intermediate processing of health information (IPHI).'. Inform Prim Care, England: 20 (2), pp. 81-86.
  • de Lusignan S, Krause P, Michalakidis G, Vicente MT, Thompson S, McGilchrist M, Sullivan F, van Royen P, Agreus L, Desombre T, Taweel A, Delaney B. (2012) 'Business Process Modelling is an Essential Part of a Requirements Analysis. Contribution of EFMI Primary Care Working Group.'. Schattauer Publishers Yearb Med Inform, Germany: 7 (1), pp. 34-43.
  • De Lusignan S. (2011) 'On-going technical advances, can we use them to deliver more personalised medicine?'. Informatics in Primary Care, 19 (2), pp. 55-56.
  • de Lusignan S, Chan T, Parry G, Dent-Brown K, Kendrick T. (2011) 'Referral to a new psychological therapy service is associated with reduced utilisation of healthcare and sickness absence by people with common mental health problems: A before and after comparison'. Journal of Epidemiology and Community Health,
  • Stevens PE, Farmer CK, de Lusignan S. (2011) 'Effect of Pay for Performance on Hypertension in the United Kingdom.'. Am J Kidney Dis,
  • Hall S, Kulendran M, Sadek AR, Green S, de Lusignan S. (2011) 'Variability in selecting patients to manage in the community: a service evaluation of community matron's case-finding strategies.'. Fam Pract, England: 28 (4), pp. 414-421.
  • De Lusignan S. (2011) 'Making health information and communications technology (ICT) relevant and usable for quality improvement and research'. Informatics in Primary Care, 19 (4), pp. 187-188.
  • de Lusignan S, Nitsch D, Belsey J, Kumarapeli P, Vamos EP, Majeed A, Millett C. (2011) 'Disparities in testing for renal function in UK primary care: cross-sectional study.'. Fam Pract,
  • Dhoul N, de Lusignan S, Dmitrieva O, Stevens P, O'Donoghue D. (2011) 'Quality achievement and disease prevalence in primary care predicts regional variation in renal replacement therapy (RRT) incidence: an ecological study.'. Nephrol Dial Transplant,
  • de Lusignan S. (2011) 'Auditing quality in kidney disease and diabetes: is the precise the enemy of the good? A commentary on difficulties auditing pathology results containing 'greater than' or 'less than' signs.'. Inform Prim Care, England: 19 (4), pp. 189-190.
  • de Lusignan S. (2011) 'Informatics in primary care: 20 years on--editor's report 2011.'. Inform Prim Care, England: 19 (3), pp. 183-186.
  • de Lusignan S, Liaw ST, Michalakidis G, Jones S. (2011) 'Defining datasets and creating data dictionaries for quality improvement and research in chronic disease using routinely collected data: an ontology-driven approach.'. Inform Prim Care, England: 19 (3), pp. 127-134.
  • de Lusignan S. (2011) 'International lessons in clinical quality and evaluation'. Informatics in Primary Care, 18 (3), pp. 145-146.
  • de Lusignan S, Tomson C, Harris K, van Vlymen J, Gallagher H. (2011) 'Creatinine fluctuation has a greater effect than the formula to estimate glomerular filtration rate on the prevalence of chronic kidney disease.'. Karger Nephron Clinical Practice, Switzerland: 117 (3), pp. c213-c224.

    Abstract

    Cases of chronic kidney disease (CKD) are defined by the estimated glomerular filtration rate (eGFR), calculated using the Modified Diet in Renal Disease (MDRD) or, more recently, the CKD Epidemiology Collaboration (CKD-EPI) formula. This study set out to promote a systematic approach to reporting CKD prevalence. DESIGN, SETTING, PARTICIPANTS AND MEASUREMENTS: The study explores the impact of the way in which eGFR is calculated on the prevalence of CKD. We took into account whether including (1) ethnicity, (2) using a single eGFR, (3) using more than 1 eGFR value or (4) using the CKD-EPI formula affected the estimates of prevalence.

  • De Lusignan S, Michalakidis G, Vicente MT, Pearce C, Shaw NT, Liaw S-T, Bainbridge M. (2011) 'What are the barriers to conducting international research using routinely collected primary care data?'. Studies in Health Technology and Informatics, 165, pp. 135-140.
  • de Lusignan S. (2011) 'SNOMED is coming, and more about using and interacting with technology in primary care.'. Inform Prim Care, England: 19 (1), pp. 1-2.
  • Tahir MA, Dmitrieva O, de Lusignan S, van Vlymen J, Chan T, Golmohamad R, Harris K, Tomson C, Thomas N, Gallagher H. (2011) 'Confidence and quality in managing CKD compared with other cardiovascular diseases and diabetes mellitus: a linked study of questionnaire and routine primary care data.'. BMC Fam Pract, England: 12
  • de Lusignan S, Pearce C, Kumarapeli P, Stavropoulou C, Kushniruk A, Sheikh A, Shachak A, Mendis K. (2011) 'Reporting Observational Studies of the Use of Information Technology in the Clinical Consultation. A Position Statement from the IMIA Primary Health Care Informatics Working Group (IMIA PCI WG).'. Yearb Med Inform, Germany: 6 (1), pp. 39-47.
  • de Lusignan S, Liaw ST, Krause P, Curcin V, Vicente MT, Michalakidis G, Agreus L, Leysen P, Shaw N, Mendis K. (2011) 'Key Concepts to Assess the Readiness of Data for International Research: Data Quality, Lineage and Provenance, Extraction and Processing Errors, Traceability, and Curation. Contribution of the IMIA Primary Health Care Informatics Working Group.'. Yearb Med Inform, Germany: 6 (1), pp. 112-120.
  • Poh N, de Lusignan S. (2011) 'Data-modelling and visualisation in chronic kidney disease (CKD): a step towards personalised medicine.'. Inform Prim Care, England: 19 (2), pp. 57-63.
  • De Lusignan S, Navarro R, Chan T, Parry G, Dent-Brown K, Kendrick T. (2011) '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'. BioMed Central BMC Medical Informatics and Decision Making, 11 (61)

    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 indepth 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.

  • de Lusignan S, Chan T, Jones S. (2011) 'Large complex terminologies: more coding choice, but harder to find data--reflections on introduction of SNOMED CT (Systematized Nomenclature of Medicine--Clinical Terms) as an NHS standard.'. Inform Prim Care, England: 19 (1), pp. 3-5.
  • Stevens PE, Farmer CKT, De Lusignan S. (2011) 'Effect of pay for performance on hypertension in the United Kingdom'. American Journal of Kidney Diseases, 58 (4), pp. 508-511.
  • Phillips CB, Pearce CM, Hall S, Travaglia J, de Lusignan S, Love T, Kljakovic M. (2010) 'Can clinical governance deliver quality improvement in Australian general practice and primary care? A systematic review of the evidence'. AUSTRALASIAN MED PUBL CO LTD MEDICAL JOURNAL OF AUSTRALIA, 193 (10), pp. 602-607.
  • Debar S, Kumarapeli P, Kaski JC, de Lusignan S. (2010) 'Addressing modifiable risk factors for coronary heart disease in primary care: an evidence-base lost in translation.'. Fam Pract, England: 27 (4), pp. 370-378.
  • Murray J, Saxena S, Millett C, Curcin V, de Lusignan S, Majeed A. (2010) 'Reductions in risk factors for secondary prevention of coronary heart disease by ethnic group in south-west London: 10-year longitudinal study (1998-2007).'. Fam Pract, England: 27 (4), pp. 430-438.
  • Stone MA, Camosso-Stefinovic J, Wilkinson J, de Lusignan S, Hattersley AT, Khunti K. (2010) 'Incorrect and incomplete coding and classification of diabetes: a systematic review (vol 27, pg 491, 2010)'. WILEY-BLACKWELL PUBLISHING, INC DIABETIC MED, 27 (6), pp. 732-732.
  • Gallagher H, de Lusignan S, Harris K, Cates C. (2010) 'Quality-improvement strategies for the management of hypertension in chronic kidney disease in primary care: a systematic review.'. Br J Gen Pract, England: 60 (575), pp. e258-e265.
  • Crinson I, Gallagher H, Thomas N, de Lusignan S. (2010) 'How ready is general practice to improve quality in chronic kidney disease? A diagnostic analysis.'. Br J Gen Pract, England: 60 (575), pp. 403-409.
  • Stone MA, Camosso-Stefinovic J, Wilkinson J, de Lusignan S, Hattersley AT, Khunti K. (2010) 'Incorrect and incomplete coding and classification of diabetes: a systematic review.'. Diabet Med, England: 27 (5), pp. 491-497.
  • de Lusignan S, Khunti K, Belsey J, Hattersley A, van Vlymen J, Gallagher H, Millett C, Hague NJ, Tomson C, Harris K, Majeed A. (2010) 'A method of identifying and correcting miscoding, misclassification and misdiagnosis in diabetes: a pilot and validation study of routinely collected data.'. Diabet Med, England: 27 (2), pp. 203-209.
  • de Lusignan S, Krause P. (2010) 'The Hayes principles: learning from the national pilot of information technology and core generalisable theory in informatics.'. Inform Prim Care, England: 18 (2), pp. 73-77.
  • Stone MA, Camosso-Stefinovic J, Wilkinson J, De Lusignan S, Hattersley AT, Khunti K. (2010) 'Erratum: Incorrect and incomplete coding and classification of diabetes: A systematic review (Diabetic Medicine (2010) 27 (491-497))'. Diabetic Medicine, 27 (6), pp. 732-732.
  • de Lusignan S, Krause P. (2010) 'Liberating the NHS: an information revolution--think beyond the electronic patient record, think service orientated architecture!'. Inform Prim Care, England: 18 (3), pp. 147-148.
  • de Lusignan S. (2010) 'Bibliometric analysis of primary care research, childhood obesity, the importance of understanding small area data and diabetes.'. Inform Prim Care, England: 18 (4), pp. 217-218.
  • Pflug B, Kumarapeli P, van Vlymen J, Ammenwerth E, de Lusignan S. (2010) 'Measuring the impact of the computer on the consultation: an open source application to combine multiple observational outputs.'. Inform Health Soc Care, England: 35 (1), pp. 10-24.
  • de Lusignan S. (2010) 'Looking beyond the National Programme for IT in primary care informatics.'. Inform Prim Care, England: 18 (2), pp. 79-80.
  • de Lusignan S, Sullivan F, Krause P. (2010) 'Vault, cloud and agent: choosing strategies for quality improvement and research based on routinely collected health data.'. Inform Prim Care, England: 18 (1), pp. 1-4.
  • Pearce C, Kumarpeli P, de Lusignan S. (2010) 'Getting seamless care right from the beginning - integrating computers into the human interaction.'. Stud Health Technol Inform, Netherlands: 155, pp. 196-202.
  • de Lusignan S. (2010) 'Computerised routinely collected primary care data: essential for patient access to records, quality improvement and research.'. Inform Prim Care, England: 18 (1), pp. 5-7.
  • Hogg F, de Lusignan S, Hinchliffe RJ. (2010) 'Implementing an integrated computerised information system about foot problems in diabetes is not enough to ensure adoption. Commentary on: general practitioners' and nurses' experiences of using computerised decision support in screening for diabetic foot disease: implementing Scottish Clinical Information - Diabetes Care in routine clinical practice.'. Inform Prim Care, England: 18 (4), pp. 269-271.
  • de Lusignan S, Hogg F, Hinchliffe RJ. (2010) 'Getting the signal to noise ratio right in the management of diabetes in primary care: time to stratify risk and focus on outcomes rather than process.'. Inform Prim Care, England: 18 (4), pp. 219-221.
  • Chan T, van Vlymen J, Dhoul N, de Lusignan S. (2010) '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, England: 18 (3), pp. 189-196.
  • Hogg F, de Lusignan S, Hinchliffe RJ. (2010) 'Commentary on: creating a diabetes foot reminder-based registry using the electronic medical record.'. Inform Prim Care, England: 18 (4), pp. 288-289.
  • Chan T, Cohen A, de Lusignan S. (2010) 'Using routine data to conduct small area health needs assessment through observing trends in demographics, recording of common mental health problems (CMHPs) and sickness certificates: longitudinal analysis of a northern and London locality.'. Inform Prim Care, England: 18 (4), pp. 273-282.
  • Rollason W, Khunti K, de Lusignan S. (2009) 'Variation in the recording of diabetes diagnostic data in primary care computer systems: implications for the quality of care.'. Inform Prim Care, England: 17 (2), pp. 113-119.
  • de Lusignan S. (2009) 'Flagging fasting plasma glucose specimens: time to routinely label the context in which pathology specimens are recorded.'. Inform Prim Care, England: 17 (2), pp. 63-64.
  • Bagheri A, Sadek A, Chan T, Khunti K, de Lusignan S. (2009) 'Using surrogate markers in primary electronic patient record systems to confirm or refute the diagnosis of diabetes.'. Inform Prim Care, England: 17 (2), pp. 121-129.
  • De Lusignan S, Chan T, Gallagher H, Van Vlymen J, Thomas N, Jain N, Tahir A, Nation M, Moore J, Reid F, Harris K, Hague N. (2009) 'Chronic kidney disease management in southeast England: A preliminary cross-sectional report from the QICKD - Quality Improvement in Chronic Kidney Disease study'. Primary Care Cardiovascular Journal, 2 (SPEC. ISS.), pp. 33-39.
  • Masic I, Kern J, Zvarova J, de Lusignan S. (2009) 'Task force of the EFMI journals: background, rationale and purpose.'. Stud Health Technol Inform, Netherlands: 150, pp. 946-950.
  • de Lusignan S. (2009) 'Usability: a neglected theme in informatics.'. Inform Prim Care, England: 17 (4), pp. 199-200.
  • de Lusignan S. (2009) 'In this issue of Informatics in Primary Care: ethnicity, learning and diabetes.'. Inform Prim Care, England: 17 (2), pp. 65-66.
  • de Lusignan S. (2009) 'In this issue: use of electronic patient record (EPR) system data for emergency care, quality improvement and research--things not to take for granted.'. Inform Prim Care, England: 17 (3), pp. 143-144.
  • de Lusignan S, Kumarapeli P, Debar S, Kushniruk AW, Pearce C. (2009) 'Using an open source observational tool to measure the influence of the doctor's consulting style and the computer system on the outcomes of the clinical consultation.'. Stud Health Technol Inform, Netherlands: 150, pp. 1017-1021.
  • Vaziri A, Connor E, Shepherd I, Jones RT, Chan T, de Lusignan S. (2009) 'Are we setting about improving the safety of computerised prescribing in the right way? A workshop report.'. Inform Prim Care, England: 17 (3), pp. 175-182.
  • de Lusignan S, Gallagher H, Chan T, Thomas N, van Vlymen J, Nation M, Jain N, Tahir A, du Bois E, Crinson I, Hague N, Reid F, Harris K. (2009) 'The QICKD study protocol: a cluster randomised trial to compare quality improvement interventions to lower systolic BP in chronic kidney disease (CKD) in primary care.'. BioMed Central Implementation Science, England: 4 (39)

    Abstract

    BACKGROUND: Chronic kidney disease (CKD) is a relatively newly recognised but common long-term condition affecting 5 to 10% of the population. Effective management of CKD, with emphasis on strict blood pressure (BP) control, reduces cardiovascular risk and slows the progression of CKD. There is currently an unprecedented rise in referral to specialist renal services, which are often located in tertiary centres, inconvenient for patients, and wasteful of resources. National and international CKD guidelines include quality targets for primary care. However, there have been no rigorous evaluations of strategies to implement these guidelines. This study aims to test whether quality improvement interventions improve primary care management of elevated BP in CKD, reduce cardiovascular risk, and slow renal disease progression DESIGN: Cluster randomised controlled trial (CRT) METHODS: This three-armed CRT compares two well-established quality improvement interventions with usual practice. The two interventions comprise: provision of clinical practice guidelines with prompts and audit-based education. The study population will be all individuals with CKD from general practices in eight localities across England. Randomisation will take place at the level of the general practices. The intended sample (three arms of 25 practices) powers the study to detect a 3 mmHg difference in systolic BP between the different quality improvement interventions. An additional 10 practices per arm will receive a questionnaire to measure any change in confidence in managing CKD. Follow up will take place over two years. Outcomes will be measured using anonymised routinely collected data extracted from practice computer systems. Our primary outcome measure will be reduction of systolic BP in people with CKD and hypertension at two years. Secondary outcomes will include biomedical outcomes and markers of quality, including practitioner confidence in managing CKD. A small group of practices (n = 4) will take part in an in-depth process evaluation. We will use time series data to examine the natural history of CKD in the community. Finally, we will conduct an economic evaluation based on a comparison of the cost effectiveness of each intervention. CLINICAL TRIALS REGISTRATION: ISRCTN56023731. ClinicalTrials.gov identifier.

  • Pearce C, Shachak A, Kushniruk A, de Lusignan S. (2009) 'Usability: a critical dimension for assessing the quality of clinical systems.'. Inform Prim Care, England: 17 (4), pp. 195-198.
  • Debar S, De Lusignan S, Kaski JC. (2009) 'Assessing cardiovascular risk in the 10-minute consultation'. Primary Care Cardiovascular Journal, 2 (4), pp. 181-183.
  • Herbert I, de Lusignan S. (2009) 'Further changes are needed if the National Care Record Service (NCRS) implementation is to succeed.'. Inform Prim Care, England: 17 (3), pp. 161-164.
  • de Lusignan S, Buxton N, Kent A. (2008) '10-MINUTE CONSULTATION New patient asking for a benzodiazepine prescription'. B M J PUBLISHING GROUP BRITISH MEDICAL JOURNAL, 337 Article number ARTN a658
  • Belsey J, de Lusignan S, van Vlymen J, Chan T, Hague N. (2008) 'Reducing coronary risk by raising HDL-cholesterol: risk modelling the addition of nicotinic acid to existing therapy.'. Curr Med Res Opin, England: 24 (9), pp. 2703-2709.
  • Belsey J, de Lusignan S, Chan T, van Vlymen J, Hague N. (2008) 'Abnormal lipids in high-risk patients achieving cholesterol targets: a cross-sectional study of routinely collected UK general practice data.'. Curr Med Res Opin, England: 24 (9), pp. 2551-2560.
  • de Lusignan S, Chan T. (2008) 'The development of primary care information technology in the United kingdom.'. Lippincott, Williams & Wilkins J Ambul Care Manage, United States: 31 (3), pp. 201-210.

    Abstract

    UK primary care is highly computerized; initially led by enthusiastic general practitioners who developed their own systems. This preceded the development of a National Health Service information strategy and an ambitious National Programme for IT.

  • Refsum C, Kumarapeli P, Gunaratne A, Dodds R, Hasan A, de Lusignan S. (2008) 'Measuring the impact of different brands of computer systems on the clinical consultation: a pilot study.'. Inform Prim Care, England: 16 (2), pp. 119-127.
  • de Lusignan S. (2008) 'Prescribing support software recommends more expensive prescriptions.'. Inform Prim Care, England: 16 (1), pp. 61-62.
  • de Lusignan S. (2008) 'Change of Editor'. Informatics in Primary Care, 16 (1), pp. 63-63.
  • de Lusignan S. (2008) 'Autumn issue of Informatics in Primary Care: extending our understanding and the case for greater research capacity and capability in informatics. Editorial.'. Inform Prim Care, England: 16 (3), pp. 171-173.
  • de Lusignan S. (2008) 'Automated password generation of offensive expressions: Choose and Book and poppycock.'. Inform Prim Care, England: 16 (3), pp. 241-242.
  • de Lusignan S, Buxton N, Kent A. (2008) 'New patient asking for a benzodiazepine prescription.'. BMJ BMJ, England: 337
  • de Lusignan S. (2008) 'Using routinely collected patient data with and without consent: trust and professionalism.'. Inform Prim Care, England: 16 (4), pp. 251-254.
  • de Lusignan S, Kumarapeli P, Chan T, Pflug B, van Vlymen J, Jones B, Freeman GK. (2008) 'The ALFA (Activity Log Files Aggregation) toolkit: a method for precise observation of the consultation.'. J Med Internet Res, United States: 10 (4)
  • de Lusignan S. (2008) 'Developing primary care informatics.'. Inform Prim Care, England: 16 (1), pp. 1-2.
  • de Lusignan S, Aarts J. (2008) 'UK's National Programme for IT welcomes recommendation for a more sociotechnical approach to evaluation: a commentary on the Greenhalgh evaluation of the summary care record.'. Inform Prim Care, England: 16 (2), pp. 75-77.
  • Klebe B, Irving J, Stevens PE, O'Donoghue DJ, de Lusignan S, Cooley R, Hobbs H, Lamb EJ, John I, Middleton R, New J, Farmer CK. (2007) 'The cost of implementing UK guidelines for the management of chronic kidney disease.'. Nephrol Dial Transplant, England: 22 (9), pp. 2504-2512.
  • Klebe B, Farmer C, Cooley R, de Lusignan S, Middleton R, O'Donoghue D, New J, Stevens P. (2007) 'Kidney disease management in UK primary care: guidelines, incentives and information technology.'. Fam Pract, England: 24 (4), pp. 330-335.
  • Stevens PE, O'Donoghue DJ, de Lusignan S, Van Vlymen J, Klebe B, Middleton R, Hague N, New J, Farmer CK. (2007) 'Chronic kidney disease management in the United Kingdom: NEOERICA project results.'. Kidney Int, United States: 72 (1), pp. 92-99.
  • de Lusignan S, Chan T, Theadom A, Dhoul N. (2007) 'The roles of policy and professionalism in the protection of processed clinical data: a literature review.'. Int J Med Inform, Ireland: 76 (4), pp. 261-268.
  • New JP, Middleton RJ, Klebe B, Farmer CK, de Lusignan S, Stevens PE, O'Donoghue DJ. (2007) 'Assessing the prevalence, monitoring and management of chronic kidney disease in patients with diabetes compared with those without diabetes in general practice.'. Diabet Med, England: 24 (4), pp. 364-369.
  • Kumarapeli P, De Lusignan S, Ellis T, Jones B. (2007) 'Using Unified Modelling Language (UML) as a process-modelling technique for clinical-research process improvement.'. Med Inform Internet Med, England: 32 (1), pp. 51-64.
  • Tai TW, Anandarajah S, Dhoul N, de Lusignan S. (2007) 'Variation in clinical coding lists in UK general practice: a barrier to consistent data entry?'. Inform Prim Care, England: 15 (3), pp. 143-150.
  • Kumarapeli P, de Lusignan S, Koczan P, Jones B, Sheeler I. (2007) 'The feasibility of using UML to compare the impact of different brands of computer system on the clinical consultation.'. Inform Prim Care, England: 15 (4), pp. 245-253.
  • Sheeler I, Koczan P, Wallage W, de Lusignan S. (2007) 'Low-cost three-channel video for assessment of the clinical consultation.'. Inform Prim Care, England: 15 (1), pp. 25-31.
  • Crinson I, Shaw A, Durrant R, De Lusignan S, Williams B. (2007) 'Coronary heart disease and the management of risk: Patient perspectives of outcomes associated with the clinical implementation of the National Service Framework targets'. ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD HEALTH RISK & SOCIETY, 9 (4), pp. 359-373.
  • de Lusignan S, Katić M. (2007) 'UK and Croatia: family practice, its medical records and computerisation in the context of an enlarged Europe.'. Inform Prim Care, England: 15 (3), pp. 169-173.
  • de Lusignan S, Teasdale S. (2007) 'Achieving benefit for patients in primary care informatics: the report of a international consensus workshop at Medinfo 2007.'. Inform Prim Care, England: 15 (4), pp. 255-261.
  • Kumarapeli P, De Lusignan S, Ellis T, Jones B. (2007) 'Using Unified Modelling Language (UML) as a process-modelling technique for clinical-research process improvement'. Informatics for Health and Social Care, 32 (1), pp. 51-64.
  • Moulene MV, de Lusignan S, Freeman G, van Vlymen J, Sheeler I, Singleton A, Kumarapeli P. (2007) 'Assessing the impact of recording quality target data on the GP consultation using multi-channel video.'. Stud Health Technol Inform, Netherlands: 129 (Pt 2), pp. 1132-1136.
  • Pigott K, De Lusignan S, Rapley A, Robinson J, Pritchard-Copley A. (2007) 'An Informatics benchmarking statement'. SCHATTAUER GMBH-VERLAG MEDIZIN NATURWISSENSCHAFTEN METHODS OF INFORMATION IN MEDICINE, 46 (4), pp. 394-398.
  • de Lusignan S. (2007) 'Relearning the lessons about the implementation of information systems in primary care: a report from the European Federation for Medical Informatics (EFMI) Special Topic Conference 2007 in Croatia.'. Inform Prim Care, England: 15 (3), pp. 167-168.
  • de Lusignan S. (2007) 'An educational intervention, involving feedback of routinely collected computer data, to improve cardiovascular disease management in UK primary care.'. Schattauer Methods Inf Med, Germany: 46 (1), pp. 57-62.

    Abstract

    To report the lessons learned from eight years of feeding back routinely collected cardiovascular data in an educational context

  • de Lusignan S, Belsey J, Hague N, Dhoul N, van Vlymen J. (2006) 'Audit-based education to reduce suboptimal management of cholesterol in primary care: a before and after study.'. Oxford University Press J Public Health (Oxf), England: 28 (4), pp. 361-369.

    Abstract

    Statins are recommended for the secondary prevention of cardiovascular disease, although they are often used in suboptimal doses and some patients may not receive lipid-lowering therapy. The Primary Care Data Quality (PCDQ) programme is an audit-based educational intervention.

  • Gomez GB, de Lusignan S, Gallagher H. (2006) 'Chronic kidney disease: a new priority for primary care.'. Br J Gen Pract, England: 56 (533), pp. 908-910.
  • Leong A, Koczan P, De Lusignan S, Sheeler I. (2006) 'A framework for comparing video methods used to assess the clinical consultation: a qualitative study.'. Med Inform Internet Med, England: 31 (4), pp. 255-265.
  • de Lusignan S, van Vlymen J, Hague N, Dhoul N. (2006) 'Using computers to identify non-compliant people at increased risk of osteoporotic fractures in general practice: a cross-sectional study.'. Springer Osteoporosis International, England: 17 (12), pp. 1808-1814.

    Abstract

    National guidelines recommend bisphosphonates for secondary prevention of osteoporotic fractures; however, poor compliance may result in sub-optimal prevention.

  • de Lusignan S. (2006) 'Chronic kidney disease.'. Br J Gen Pract, England: 56 (532)
  • Schade CP, Sullivan FM, de Lusignan S, Madeley J. (2006) 'e-Prescribing, efficiency, quality: lessons from the computerization of UK family practice.'. BMJ Publishing Group J Am Med Inform Assoc, United States: 13 (5), pp. 470-475.

    Abstract

    Nearly all general practice physicians (GPs) in the United Kingdom (UK) have electronic health record (EHR) systems in their practices compared with perhaps 15% of primary care physicians in the United States (U.S.). Based on interviews of 13 general GPs and review of current literature, the authors argue that the historical experience of widespread electronic health record uptake in the UK provides insight into features that might motivate broad adoption in the United States. These features include electronic prescribing, improved quality and consistency of care, practice efficiencies that have both timesaving and revenue generating effects, and potential shielding from malpractice claims.

  • Kumarapeli P, Stepaniuk R, de Lusignan S, Williams R, Rowlands G. (2006) 'Ethnicity recording in general practice computer systems.'. J Public Health (Oxf), England: 28 (3), pp. 283-287.
  • Petri A, de Lusignan S, Williams J, Chan T, Majeed A. (2006) 'Management of cardiovascular risk factors in people with diabetes in primary care: cross-sectional study.'. Public Health, England: 120 (7), pp. 654-663.
  • de Lusignan S, van Weel C. (2006) 'The use of routinely collected computer data for research in primary care: opportunities and challenges.'. Oxford University Press Fam Pract, England: 23 (2), pp. 253-263.
  • Leong A, Koczan P, De Lusignan S, Sheeler I. (2006) 'A framework for comparing video methods used to assess the clinical consultation: A qualitative study'. Informatics for Health and Social Care, 31 (4), pp. 255-265.
  • Chan T, De Lusignan S, Roberts AP, Cohen A, Dhoul N, Hague N, Van Vlymen J. (2006) 'Prescription of psychotropic medications in primary care: A cross-sectional study of general practice computer records'. Primary Care Mental Health, 4 (2), pp. 81-92.
  • de Lusignan S. (2006) 'The optimum granularity for coding diagnostic data in primary care: report of a workshop of the EFMI Primary Care Informatics Working Group at MIE 2005.'. Inform Prim Care, England: 14 (2), pp. 133-137.
  • Kumarapeli P, de Lusignan S, Robinson J. (2006) 'Online resources for chronic kidney disease (CKD) for primary care.'. Inform Prim Care, England: 14 (2), pp. 139-142.
  • de Lusignan S, Metsemakers JFM, Houwink P, Gunnarsdottir V, van der Lei J. (2006) 'Routinely collected general practice data: Goldmines for research?'. Informatics in Primary Care, 14 (3), pp. 203-209.
  • Robinson J, de Lusignan S, Kostkova P, Madge B, Southgate L. (2006) 'Specific classification of elibrary resources says more about users' preferences.'. Stud Health Technol Inform, Netherlands: 124, pp. 719-724.
  • Williams PH, de Lusignan S. (2006) 'Does a higher 'quality points' score mean better care in stroke? An audit of general practice medical records.'. Inform Prim Care, England: 14 (1), pp. 29-40.
  • de Lusignan S, Shaw A, Wells S, Rowlands G. (2006) 'Practice-based commissioning: The impact of motivational and organisational factors on its success'. British Journal of Health Care Management, 12 (6), pp. 174-180.
  • de Lusignan S, Hague N, van Vlymen J, Dhoul N, Chan T, Thana L, Kumarapeli P. (2006) 'A study of cardiovascular risk in overweight and obese people in England.'. Eur J Gen Pract, England: 12 (1), pp. 19-29.
  • de Lusignan S, Metsemakers JF, Houwink P, Gunnarsdottir V, van der Lei J. (2006) 'Routinely collected general practice data: goldmines for research? A report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.'. Inform Prim Care, England: 14 (3), pp. 203-209.
  • Robinson J, de Lusignan S, Kostkova P, Madge B, Marsh A, Biniaris C. (2006) 'The Primary Care Electronic Library: RSS feeds using SNOMED-CT indexing for dynamic content delivery.'. Inform Prim Care, England: 14 (4), pp. 247-252.
  • de Lusignan S. (2006) 'Biomedical Informatics: developing university, healthcare and industrial partnerships.'. Inform Prim Care, England: 14 (4), pp. 255-256.
  • de Lusignan S, Hague N, van Vlymen J, Kumarapeli P. (2006) 'Routinely-collected general practice data are complex, but with systematic processing can be used for quality improvement and research.'. Inform Prim Care, England: 14 (1), pp. 59-66.
  • de Lusignan S, Hague N, Belsey J, Dhoul N, van Vlymen J. (2006) 'The 'rule of halves' still applies to the management of cholesterol in cardiovascular disease: 2002-2005'. British Journal of Cardiology, 13 (2), pp. 145-153.
  • Robinson J, de Lusignan S, Kostkova P, Madge B. (2006) 'Using UMLS to map from a library to a clinical classification: Improving the functionality of a digital library.'. Stud Health Technol Inform, Netherlands: 121, pp. 86-95.
  • de Lusignan S, Mimnagh C. (2006) 'Breaking the first law of informatics: the Quality and Outcomes Framework (QOF) in the dock.'. Inform Prim Care, England: 14 (3), pp. 153-156.
  • Dhoul N, van Vlymen J, de Lusignan S. (2006) 'Quality of smoking data in GP computer systems in the UK'. Informatics in Primary Care, 14 (4), pp. 242-245.
  • de Lusignan S. (2006) 'Chronic kidney disease [5]'. British Journal of General Practice, 56 (532), pp. 885-885.
  • Williams B, Shaw A, Durrant R, Crinson I, Pagliari C, de Lusignan S. (2005) 'Patient perspectives on multiple medications versus combined pills: a qualitative study.'. QJM, England: 98 (12), pp. 885-893.
  • Anandarajah S, Tai T, de Lusignan S, Stevens P, O'Donoghue D, Walker M, Hilton S. (2005) 'The validity of searching routinely collected general practice computer data to identify patients with chronic kidney disease (CKD): a manual review of 500 medical records.'. Nephrol Dial Transplant, England: 20 (10), pp. 2089-2096.
  • de Lusignan S, Chan T, Wood O, Hague N, Valentin T, Van Vlymen J. (2005) 'Quality and variability of osteoporosis data in general practice computer records: implications for disease registers.'. Public Health, England: 119 (9), pp. 771-780.
  • Shaw A, de Lusignan S, Rowlands G. (2005) 'Do primary care professionals work as a team: a qualitative study.'. J Interprof Care, England: 19 (4), pp. 396-405.
  • de Lusignan S, Chan T, Stevens P, O'Donoghue D, Hague N, Dzregah B, Van Vlymen J, Walker M, Hilton S. (2005) 'Identifying patients with chronic kidney disease from general practice computer records.'. Oxford University Press Fam Pract, England: 22 (3), pp. 234-241.
  • de Lusignan S. (2005) 'The barriers to clinical coding in general practice: a literature review.'. Med Inform Internet Med, England: 30 (2), pp. 89-97.
  • Lusignan S, Sismanidis C, Carey IM, DeWilde S, Richards N, Cook DG. (2005) 'Trends in the prevalence and management of diagnosed type 2 diabetes 1994-2001 in England and Wales.'. BMC Fam Pract, England: 6 (1)
  • De Lusignan S, Wells S, Shaw A, Rowlands G, Crilly T. (2005) 'A knowledge audit of the managers of primary care organizations: top priority is how to use routinely collected clinical data for quality improvement.'. Med Inform Internet Med, England: 30 (1), pp. 69-80.
  • de Lusignan S, van Vlymen J, Hague N, Thana L, Dzregah B, Chan T. (2005) 'Preventing stroke in people with atrial fibrillation: a cross-sectional study.'. Oxford University Press J Public Health (Oxf), England: 27 (1), pp. 85-92.

    Abstract

    The annual stroke rate in atrial fibrillation is around 5 per cent with increased risk in those with hypertension, diabetes, left ventricular dysfunction and other cardiovascular risk factors. This study set out to identify the patients with atrial fibrillation and modifiable risk factors for stroke.

  • Majeed A, Williams J, de Lusignan S, Chan T. (2005) 'Management of heart failure in primary care after implementation of the National Service Framework for Coronary Heart Disease: a cross-sectional study.'. Public Health, England: 119 (2), pp. 105-111.
  • de Lusignan S. (2005) 'Codes, classifications, terminologies and nomenclatures: definition, development and application in practice.'. Inform Prim Care, England: 13 (1), pp. 65-70.
  • de Lusignan S. (2005) 'Web-based health applications provide useful and cost-effective tools; however, they should include key clinical variables and incorporate a coding or classification system.'. Inform Prim Care, England: 13 (1), pp. 42-44.
  • van Vlymen J, de Lusignan S. (2005) 'A system of metadata to control the process of query, aggregating, cleaning and analysing large datasets of primary care data.'. Inform Prim Care, England: 13 (4), pp. 281-291.
  • Robinson J, de Lusignan S, Kostkova P. (2005) 'The Primary Care Electronic Library (PCEL) five years on: open source evaluation of usage.'. Inform Prim Care, England: 13 (4), pp. 271-280.
  • de Lusignan S, Ellis B. (2005) 'Is the time right for direct entry into a career in health and biomedical informatics?'. Inform Prim Care, England: 13 (3), pp. 167-170.
  • De Lusignan S, Wells S, Shaw A, Rowlands G, Crilly T. (2005) 'A knowledge audit of the managers of primary care organizations: Top priority is how to use routinely collected clinical data for quality improvement'. Informa Healthcare Informatics for Health and Social Care, 30 (1), pp. 69-80.
  • De Lusignan S. (2005) 'The barriers to clinical coding in general practice: A literature review'. Informatics for Health and Social Care, 30 (2), pp. 89-97.
  • Tringali M, de Lusignan S. (2005) 'Foundations of a healthcare knowledge management application system.'. AMIA Annu Symp Proc, United States:

    Abstract

    Much of the knowledge management (KM) literature suggests that organizations should adopt either a "personalization" or "codification" strategy and that to mix the two is unwise. Two European schools have come to the conclusion that a broad strategy is needed. Its key conceptual elements are in three dimensions: the type (explicit - tacit), focus (information - learning) and organization (digital - social) of knowledge. Without this broad approach it is impossible to reconcile the wish to provide (codified) evidence-based solutions to populations at the same time as personalized care for individuals.

  • De Lusignan S, Shaw A, Wells S, Rowlands G. (2005) 'Why do some practices innovate: A qualitative study of the views of primary care professionals'. Clinician in Management, 13 (3-4), pp. 135-143.
  • De Lusignan S, Thana L, Dhoul N, Hague N, Van Vlymen J, Chan T, Cohen A. (2005) 'Health education and prevention for people with severe mental illness: A cross-sectional study of general practice computer records'. Primary Care Mental Health, 3 (3), pp. 221-233.
  • Chan T, de Lusignan S, Brew S. (2004) 'Overcoming the barriers to using information systems.'. Nurs Times, England: 100 (49), pp. 44-46.
  • Cox S, de Lusignan S, Chan T. (2004) 'General practitioners believe that hypnotherapy could be a useful treatment for irritable bowel syndrome in primary care.'. BioMed Central BMC Fam Pract, England: 5 (22)

    Abstract

    Irritable bowel syndrome is a common condition in general practice. It occurs in 10 to 20% of the population, but less than half seek medical assistance with the complaint.

  • Chan T, Brew S, de Lusignan S. (2004) 'Community nursing needs more silver surfers: a questionnaire survey of primary care nurses' use of information technology.'. BMC Nurs, 3 (1)

    Abstract

    BACKGROUND: In the UK the health service is investing more than ever before in information technology (IT) and primary care nurses will have to work with computers. Information about patients will be almost exclusively held in electronic patient records; and much of the information about best practice is most readily accessible via computer terminals. OBJECTIVE: To examine the influence of age and nursing profession on the level of computer use. METHODS: A questionnaire was developed to examine: access, training received, confidence and use of IT. The survey was carried out in a Sussex Primary Care Trust, in the UK. RESULTS: The questionnaire was sent to 109 nurses with a 64% response rate. Most primary care nurses (89%) use their computer regularly at work: 100% of practice nurses daily, compared with 60% of district nurses and 59% of health visitors (p < 0.01). Access to IT was not significantly different between different age groups; but 91% of practice nurses had their own computer while many district nurses and health visitors had to share (p < 0.01). Nurses over 50 had received more training that their younger colleagues (p < 0.01); yet despite this, they lacked confidence and used computers less (p < 0.001). 96% of practice nurses were confident at in using computerised medical records, compared with 53% of district nurses and 44% of health visitors (p < 0.01.) One-to-one training and workshops were the preferred formats for training, with Internet based learning and printed manuals the least popular (p < 0.001). CONCLUSIONS: Using computers in the surgery has become the norm for primary care nurses. However, nurses over 50, working out in the community, lack the confidence and skill of their younger and practice based colleagues.

  • de Lusignan S, Belsey J, Hague N, Dzregah B. (2004) 'End-digit preference in blood pressure recordings of patients with ischaemic heart disease in primary care.'. J Hum Hypertens, England: 18 (4), pp. 261-265.
  • Chan T, de Lusignan S, Pritchard K. (2004) 'Nurses and IT: a survey of use among community clinical staff.'. Prof Nurse, England: 19 (8), pp. 449-452.
  • de Lusignan S, Hague N, Brown A, Majeed A. (2004) 'An educational intervention to improve data recording in the management of ischaemic heart disease in primary care.'. Oxford University Press J Public Health (Oxf), England: 26 (1), pp. 34-37.

    Abstract

    Gaps in computerized medical records and a lack of a systematic approach to data recording make progress towards achieving quality standards in primary care difficult to demonstrate. The aim of this study was to examine the effect of an educational intervention on data quality in primary care.

  • Faulconer ER, de Lusignan S. (2004) 'An eight-step method for assessing diagnostic data quality in practice: chronic obstructive pulmonary disease as an exemplar.'. Inform Prim Care, England: 12 (4), pp. 243-254.
  • de Lusignan S, Valentin T, Chan T, Hague N, Wood O, van Vlymen J, Dhoul N. (2004) 'Problems with primary care data quality: osteoporosis as an exemplar.'. Inform Prim Care, England: 12 (3), pp. 147-156.
  • de Lusignan S, Teasdale S, Little D, Zapp J, Zuckerman A, Bates DW, Steele A. (2004) 'Comprehensive computerised primary care records are an essential component of any national health information strategy: report from an international consensus conference.'. Inform Prim Care, England: 12 (4), pp. 255-264.
  • de Lusignan S, Singleton A, Wells S. (2004) 'Lessons from the implementation of a near patient anticoagulant monitoring service in primary care.'. Inform Prim Care, England: 12 (1), pp. 27-33.
  • de Lusignan S, Wilson E, Dyble A, Grant T, Theadom A, Chan T. (2003) 'The feasibility of using pattern recognition software to measure the influence of computer use on the consultation.'. BioMed Central BMC Med Inform Decis Mak, England: 3 (12)

    Abstract

    A key feature of a good general practice consultation is that it is patient-centred. A number of verbal and non-verbal behaviours have been identified as important to establish a good relationship with the patient. However, the use of the computer detracts the doctor's attention away from the patient, compromising these essential elements of the consultation. Current methods to assess the consultation and the influence of the computer on them are time consuming and subjective. If it were possible to measure these quantitatively, it could provide the basis for the first truly objective way of studying the influence of the computer on the consultation. The aim was to assess whether pattern recognition software could be used to measure the influence and pattern of computer use in the consultation. If this proved possible it would provide, for the first time, an objective quantitative measure of computer use and a measure of the attention and responsiveness of the general practitioner towards the patient.

  • de Lusignan S, Chan T, Wells S, Cooper A, Harvey M, Brew S, Wright M. (2003) 'Can patients with osteoporosis, who should benefit from implementation of the national service framework for older people, be identified from general practice computer records? A pilot study that illustrates the variability of computerized medical records and problems with searching them.'. Elsevier Public Health, England: 117 (6), pp. 438-445.
  • de Lusignan S. (2003) 'The National Health Service and the internet.'. Royal Society of Medicine Press Journal of the Royal Society of Medicine, England: 96 (10), pp. 490-493.
  • Braithwaite D, Emery J, De Lusignan S, Sutton S. (2003) 'Using the Internet to conduct surveys of health professionals: a valid alternative?'. Fam Pract, England: 20 (5), pp. 545-551.
  • de Lusignan S. (2003) 'What is primary care informatics?'. J Am Med Inform Assoc, United States: 10 (4), pp. 304-309.
  • Wells S, de Lusignan S. (2003) 'Does screening for loss of lung function help smokers give up?'. Br J Nurs, England: 12 (12), pp. 744-750.
  • de Lusignan S, Lakhani M, Chan T. (2003) 'The role of informatics in continuing professional development and quality improvement in primary care.'. Medknow Publications J Postgrad Med, India: 49 (2), pp. 163-165.
  • de Lusignan S. (2003) 'Commentary: Improve the quality of the consultation.'. BMJ, England: 326 (7382), pp. 202-206.
  • de Lusignan S. (2003) 'Commentary: improve the quality of the consultation'. BRITISH MED JOURNAL PUBL GROUP BRITISH MEDICAL JOURNAL, 326 (7382), pp. 205-206.
  • de Lusignan S, Wells S, Russell C. (2003) 'A model for patient-centred nurse consulting in primary care.'. Br J Nurs, England: 12 (2), pp. 85-90.
  • De Lusignan S, Dzregah B, Hague N, Chan T. (2003) 'Cholesterol management in patients with IHD: An audit-based appraisal of progress towards clinical targets in primary care'. British Journal of Cardiology, 10 (3), pp. 223-228.
  • de Lusignan S. (2003) 'Introduction to the Primary Care Informatics Working Group of the European Federation for Medical Informatics (EFMI).'. Inform Prim Care, England: 11 (3), pp. 175-176.
  • de Lusignan S, Wells SE, Hague NJ, Thiru K. (2003) 'Managers see the problems associated with coding clinical data as a technical issue whilst clinicians also see cultural barriers.'. Schattauer Methods of Information in Medicine, Germany: 42 (4), pp. 416-422.

    Abstract

    In UK general practice, the coding of clinical data (Read Coding) is far from universal. This study set out to examine the barriers to recording structured information in computerised medical records; and to explore whether managers and clinicians had different perspectives in how these barriers should be overcome.

  • de Lusignan S, Teasdale S. (2003) 'Commentary'. Informatics in Primary Care, 11 (4), pp. 234-237.
  • Thiru K, De Lusignan S, Sullivan F, Brew S, Cooper A. (2003) 'Three steps to data quality.'. Inform Prim Care, England: 11 (2), pp. 95-102.
  • Theadom A, de Lusignan S, Wilson E, Chan T. (2003) 'Using three-channel video to evaluate the impact of the use of the computer on the patient-centredness of the general practice consultation.'. Inform Prim Care, England: 11 (3), pp. 149-156.
  • De Lusignan S, Wilson E, Dyble A, Grant T, Theadom A, Chan T. (2003) 'The feasibility of using pattern recognition software to measure the influence of computer use on the consultation'. BioMed Central BMC Medical Informatics and Decision Making, 3 (12), pp. 1-10.

    Abstract

    Background: A key feature of a good general practice consultation is that it is patient-centred. A number of verbal and non-verbal behaviours have been identified as important to establish a good relationship with the patient. However, the use of the computer detracts the doctor's attention away from the patient, compromising these essential elements of the consultation. Current methods to assess the consultation and the influence of the computer on them are time consuming and subjective. If it were possible to measure these quantitatively, it could provide the basis for the first truly objective way of studying the influence of the computer on the consultation. The aim was to assess whether pattern recognition software could be used to measure the influence and pattern of computer use in the consultation. If this proved possible it would provide, for the first time, an objective quantitative measure of computer use and a measure of the attention and responsiveness of the general practitioner towards the patient. Methods: A feasibility study using pattern recognition software to analyse a consultation was conducted. A web camera, linked to a data-gathering node was used to film a simulated consultation in a standard office. Members of the research team enacted the role of the doctor and the patient, using pattern recognition software to try and capture patient-centred, non-verbal behaviour. As this was a feasibility study detailed results of the analysis are not presented. Results: It was revealed that pattern recognition software could be used to analyse certain aspects of a simulated consultation. For example, trigger lines enabled the number of times the clinician's hand covered the keyboard to be counted and wrapping recorded the number of times the clinician nodded his head. It was also possible to measure time sequences and whether the movement was brief or lingering. Conclusion: Pattern recognition software enables movements associated with patientcentredness to be recorded. Pattern recognition software has the potential to provide an objective, quantitative measure of the influence of the computer on the consultation.

  • Carr-Bains S, de Lusignan S. (2003) 'Moving to paperlessness: a case study from a large general practice.'. Inform Prim Care, England: 11 (3), pp. 157-163.
  • de Lusignan S, Wells SE, Russell C, Bevington WP, Arrowsmith P. (2002) 'Development of an assessment tool to measure the influence of clinical software on the delivery of high quality consultations. A study comparing two computerized medical record systems in a nurse run heart clinic in a general practice setting.'. Med Inform Internet Med, England: 27 (4), pp. 267-280.
  • Howitt A, Clement S, de Lusignan S, Thiru K, Goodwin D, Wells S. (2002) 'An evaluation of general practice websites in the UK.'. Fam Pract, England: 19 (5), pp. 547-556.
  • de Lusignan S, Pritchard K, Chan T. (2002) 'A knowledge-management model for clinical practice.'. Medknow Publications. J Postgrad Med, India: 48 (4), pp. 297-303.
  • De Lusignan S, Stephens PN, Adal N, Majeed A. (2002) 'Does feedback improve the quality of computerized medical records in primary care?'. BMJ J Am Med Inform Assoc, United States: 9 (4), pp. 395-401.

    Abstract

    The MediPlus database collects anonymized information from generalpractice computer systems in the United Kingdom, for research purposes. Data quality markers are collated and fed back to the participating general practitioners. The authors examined whether this feedback had a significant effect on data quality.

  • Harvey M, De Lusignan S. (2002) 'Osteoporosis in postmenopausal women.'. Br J Gen Pract, England: 52 (479), pp. 496-497.
  • Cooper A, Brew S, de Lusignan S. (2002) 'The effectiveness of blood tests in detecting secondary osteoporosis or mimicking conditions in postmenopausal women.'. Br J Gen Pract, England: 52 (477), pp. 311-313.
  • de Lusignan S, Wells S, Singleton A. (2002) 'Why general practitioners do not implement evidence. Learning environments must be created that capitalise on teams' wealth of knowledge.'. BMJ, England: 324 (7338)
  • Temple J, De Lusignan S, Wells S, Singleton A. (2002) 'Why general practitioners do not implement evidence [3] (multiple letters)'. British Medical Journal, 324 (7338), pp. 674-674.
  • De Lusignan S, Hague N, Yates C, Harvey M. (2002) 'A case study from a Sussex Primary Care Group: Improving secondary prevention in coronary heart disease using an educational intervention'. British Journal of Cardiology, 9 (6)
  • Pluskiewicz W, Drozdzowska B, Halaba Z, Harvey M, De Lusignan S, Versluis RGJA. (2002) 'Osteoporosis in postmenopausal women (multiple letters)'. British Journal of General Practice, 52 (479), pp. 496-498.
  • de Lusignan S, Wells S, Johnson P, Meredith K, Leatham E. (2001) 'Compliance and effectiveness of 1 year's home telemonitoring. The report of a pilot study of patients with chronic heart failure.'. Eur J Heart Fail, Netherlands: 3 (6), pp. 723-730.
  • Johnson P, Andrews DC, Wells S, de Lusignan S, Robinson J, Vandenburg M. (2001) 'The use of a new continuous wireless cardiorespiratory telemonitoring system by elderly patients at home.'. J Telemed Telecare, England: 7 Suppl 1, pp. 76-77.
  • De Lusignan S, Thiru K, Majeed A. (2001) 'Use of computer systems in a primary care research network: Implications for the NHS information strategy'. Clinician in Management, 10 (1), pp. 32-37.
  • de Lusignan S, Minmagh C, Kennedy J, Zeimet M, Bommezijn H, Bryant J. (2001) 'A survey to identify the clinical coding and classification systems currently in use across Europe.'. Stud Health Technol Inform, Netherlands: 84 (Pt 1), pp. 86-89.
  • Clement S, Pickering A, Rowlands G, Thiru K, Candy B, de Lusignan S. (2000) 'Towards a conceptual framework for evaluating primary care research networks.'. Br J Gen Pract, ENGLAND: 50 (457), pp. 651-652.
  • de Lusignan S, Thiru K, Wells S, Dobson M, Howitt A. (2000) 'Overcoming the constraints to becoming paperless.'. Br J Gen Pract, ENGLAND: 50 (455), pp. 504-505.
  • de Lusignan S, Wells S, Thiru K. (2000) 'Stopping antihypertensive drugs in general practice - Response'. ROYAL COLL GENERAL PRACTITIONERS BRITISH JOURNAL OF GENERAL PRACTICE, 50 (454), pp. 407-408.
  • de Lusignan S, Wells S, Thiru K. (2000) 'Stopping antihypertensive drugs in general practice.'. Br J Gen Pract, ENGLAND: 50 (454), pp. 407-408.
  • Starkey C, Michaelis J, de Lusignan S. (2000) 'Computerised systematic secondary prevention in ischaemic heart disease: a study in one practice.'. Public Health, ENGLAND: 114 (3), pp. 169-175.
  • de Lusignan S, Thiru K, Meredith K, Majeed A, Johnson P. (2000) 'Measuring blood pressure at the wrist: more comfortable for patients and more convenient for doctors?'. Elsevier Public Health, ENGLAND: 114 (3), pp. 165-168.

    Abstract

    To compare the agreement between conventional measurement of blood pressure and measurements obtained using two automated devices; and to compare how comfortable each of the three methods of measurement were for patients.

  • Muir Gray JA, De Lusignan S. (2000) 'Correction: National electronic library for health (NeLH) (British Medical Journal (1999) 4 December (1476-9))'. British Medical Journal, 320 (7230), pp. 296-296.
  • de Lusignan S, Althans A, Wells S, Johnson P, Vandenburg M, Robinson J. (2000) 'A pilot study of radiotelemetry for continuous cardiopulmonary monitoring of patients at home'. ROYAL SOC MEDICINE PRESS J TELEMED TELECARE, 6 (1), pp. 119-122.
  • De Lusignan S, Wells S, Thiru K. (2000) 'Letter to the editor'. British Journal of General Practice, 50 (454), pp. 407-408.
  • Muir Gray JA, de Lusignan S. (1999) 'National electronic Library for Health (NeLH)'. BMJ, ENGLAND: 319 (7223), pp. 1476-1479.
  • Gray JAM, de Lusignan S. (1999) 'National electronic Library for Health (NeLH) (vol 320, pg 1476, 2000)'. BRITISH MED JOURNAL PUBL GROUP BRIT MED J, 319, pp. 1476-1479.

    Abstract

    Modern healthcare professionals have to resolve the information paradox; they are overwhelmed with information but cannot find particular information when and where they need it.1 The internet and its associated technologies, especially the world wide web, have the potential to both exacerbate and reduce these problems. Simply providing access to the world wide web per se may exacerbate the problems of information overload, since every web browser has access to hundreds of millions of pages of information. However, the cost effective provision of access to timely, current, and high quality information is what internet technology potentially offers. Creation of the National electronic Library for Health (NeLH) should be seen as an attempt to harness internet technologies to solve this information paradox. Sir Edward Waine, regius professor of medicine in Glasgow, who invented Waine's thyroid index, an early, pre-computer, decision support system, used to teach about “la maladie du petit papier.” This described the patient who, somewhat nervously, took a little bit of paper out of his jacket pocket towards the end of the consultation and used this paper to remind him of the questions that he knew he was bound to forget in the stress of the consultation. Many clinicians have now found that le maladie du petit papier is now but a fond memory as they face daily “la maladie du grand print-out,” an altogether more daunting challenge. The world wide web has blown away the walls and doors of medical libraries, which once shielded medical knowledge from the public gaze. Members of the public can now have access to almost all the information that professionals have.

  • Thiru K, de Lusignan S, Hague N. (1999) 'Have the completeness and accuracy of computer medical records in general practice improved in the last five years? the report of a two-practice pilot study'. Health Informatics Journal, 5 (4), pp. 224-232.
  • de Lusignan S, Meredith K, Wells S, Leatham E, Johnson P. (1999) 'A controlled pilot study in the use of telemedicine in the community on the management of heart failure--a report of the first three months.'. Stud Health Technol Inform, NETHERLANDS: 64, pp. 126-137.
  • de Lusignan S, Brown A. (1998) 'Internet can be accessed from NHSnet.'. BMJ, ENGLAND: 317 (7168)

Conference papers

  • LIYANAGE H, de Lusignan S. 'Ontologies to capture Adverse Events Following Immunisation (AEFI) from real world health data'.
  • McGovern A, Rafiq M, Munro N, Butler L, Russell-Jones D, Jones S, Hinchcliffe R, de Lusignan S. (2013) 'Peripheral Sensory Neuropathy is a Predictor of Mortality in People with Diabetes'. Chicago: 73 Scientific Sessions of the American Diabetes Association
  • McGovern AP, Rafiq M, Munro NM, Butler LI, Jones DR, Jones S, Hinchcliffe R, de Lusignan S. (2013) 'Peripheral Sensory Neuropathy is an Important Indicator of Mortality in People with Diabetes'. Chicago, IL, USA: American Diabetes Association 73rd Scientific Sessions
  • de Lusignan S, Andreasson AN, Pearce C, Ntasioudis A, Jones S. (2011) 'Redesigning descriptions of work, protocols, and clinical trials documentation for quality improvement and research in computerised health services: a model driven approach'. 23rd International Conference of the European Federation for Medical Informatics.
  • Michalakidis G, Kumarapeli P, Ring A, van Vlymen J, Krause P, de Lusignan S. (2010) 'A system for solution-orientated reporting of errors associated with the extraction of routinely collected clinical data for research and quality improvement.'. Studies in Health Technology and Informatics: Proceedings of the 13th World Congress on Medical Informatics, Cape Town, South Africa: MEDINFO 2010 160 (Pt 1), pp. 724-728.
  • Krause P, de Lusignan S. (2010) 'Procuring interoperability at the expense of usability: a case study of UK National Programme for IT assurance process.'. Studies in Health Technology and Informatics: Seamless care, safe care: the challenges of interoperability and patient safety in health care: Proceedings of the EFMI Special Topic Conference, Reykjavik, Iceland: EFMI Special Topic Conference 155, pp. 143-149.
  • de Lusignan S, LuzarStiffler V, Jarec I, Bekic Z. (2009) 'Improving Data Quality and Clinical Records: Lessons from the UK National Programme about Structure, Process and Utility'. SRCE UNIV COMPUTING CENTRE, UNIV ZAGREB PROCEEDINGS OF THE ITI 2009 31ST INTERNATIONAL CONFERENCE ON INFORMATION TECHNOLOGY INTERFACES, Cavtat, CROATIA: 31st International Conference on Information Technology Interfaces, pp. 13-14.
  • de Lusignan S, Sullivan F, Reichert A, Mihalas G, StoicusTivadar L, Schulz S, Engelbrecht R. (2006) 'Integration, Interoperability or Linkage: Which Elements of National IT Strategy Best Support Primary Care?'. AKADEMISCHE VERLAGSGESELLSCH AKA GMBH INTEGRATING BIOMEDICAL INFORMATION: FROM E-CELL TO E-PATIENT, Timiaoara, ROMANIA: European-Federation-for-Medical-Informatics Special Topic Conference, pp. 79-84.
  • Stevens PE, O'Donoghue DJ, de Lusignan S, Walker M, Van Vlymen J, Middleton R, Dzregah B, Farmer CK. (2005) 'Identification of CKD from interrogation of primary care electronic patient records: Factors predicting level of and decline in estimated GFR'. OXFORD UNIV PRESS NEPHROLOGY DIALYSIS TRANSPLANTATION, Istanbul, TURKEY: 42nd Annual Meeting of the European-Renal-Association/European-Dialysis-and-Transplant-Association (ERA-EDTA) 20, pp. V287-V288.
  • van Vlymen J, de Lusignan S, Hague N, Chan T, Dzregah B, Engelbrecht R, Geissbuhler A, Lovis C, Mihalas G. (2005) 'Ensuring the Quality of Aggregated General Practice Data: Lessons from the Primary Care Data Quality Programme (PCDQ)'. I O S PRESS CONNECTING MEDICAL INFORMATICS AND BIO-INFORMATICS, Geneva, SWITZERLAND: 19th International Congress of the European-Federation-for-Medical-Informatics 116, pp. 1010-1015.
  • de Lusignan S, Engelbrecht R, Geissbuhler A, Lovis C, Mihalas G. (2005) 'Using Feedback to Raise the Quality of Primary Care Computer Data: a Literature Review'. I O S PRESS CONNECTING MEDICAL INFORMATICS AND BIO-INFORMATICS, Geneva, SWITZERLAND: 19th International Congress of the European-Federation-for-Medical-Informatics 116, pp. 593-598.
  • de Lusignan S, Wells S, Kohane IS. (2002) 'Is the lack of emphasis on learning a barrier to the effective deployment of informatics? Content analysis of NHS strategy and information strategy since 1998?'. HANLEY & BELFUS INC MED PUBLISHERS AMIA 2002 SYMPOSIUM, PROCEEDINGS, San Antonio, TX: Annual Symposium of the American-Medical-Informatics-Association, pp. 1005-1005.
  • Johnson P, Andrews DC, Wells S, de Lusignan S, Robinson J, Vandenburg M. (2001) 'The use of a new continuous wireless cardiorespiratory telemonitoring system by elderly patients at home'. ROYAL SOC MEDICINE PRESS LTD JOURNAL OF TELEMEDICINE AND TELECARE, LONDON, ENGLAND: 8th International Conference on Telemedicine and Telecare 7, pp. S76-S77.

Reports

  • de Lusignan S, Jones S, McCrae N, Cookson G, Chan T. (2013) IAPT LTC/MUS Pathfinder Evaluation Project Interim report, The Improving Access to Psychological Therapies (IAPT) programme.

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