Semantic interoperability of large complex health datasets requires an ontological approach : a mixed method study

The 'connected world' forces us to think about 'interoperability' as a primary requirement when building health care databases in the present day. Whilst semantic interoperability has made a major contribution to data utilisation between systems it often has not been able to integrate some large heterogeneous datasets required for research. As health data gets 'bigger' and complex, we are required to shift to rapid and flexible ways of resolving problems related to semantic interoperability. Ontological approaches accelerate implementing interoperability due to the availability of robust tools and technology frameworks that promote reuse. This thesis reports the results of a mixed methods study that proposes a pragmatic methodology that maximises the use of ontologies across a multilayered research readiness model which can be used in data-driven health care research projects. The research examined evidence for the use of ontologies across a majority of layers in the reference model. The first part of the thesis examines the methods used for assessing readiness to participate in research across six dimensions of health care. It reports on existing ontological elements that boosts research readiness and also proposes ontological extensions for modelling the semantics of data sources and research study requirements. The second part of the thesis presents an ontology toolkit that supports rapid development of ontologies that can be used in health care research projects. It provides details of how an ontology toolkit for creating health care ontologies was developed through the consensus of a panel of informatics experts and clinicians. This toolkit evolved further to include a series of ontological building blocks that assist clinicians to rapidly build ontologies.

[1]  I. Ovhed,et al.  What is the future of primary care research? , 2005, Scandinavian journal of primary health care.

[2]  H. Timlin,et al.  The relevance of blood pressure measurements in patients attending a diabetic eye clinic: the use of an electronic patient record , 2007, Eye.

[3]  R. Steinbrook Personally controlled online health data--the next big thing in medical care? , 2008, The New England journal of medicine.

[4]  Atulya K. Nagar,et al.  Understanding Clinical Work Practices for Cross-Boundary Decision Support in e-Health , 2012, IEEE Transactions on Information Technology in Biomedicine.

[5]  S. de Lusignan,et al.  Quality achievement and disease prevalence in primary care predicts regional variation in renal replacement therapy (RRT) incidence: an ecological study. , 2012, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[6]  ECDC in collaboration with the VAESCO consortium to develop a complementary tool for vaccine safety monitoring in Europe. , 2009, Euro surveillance : bulletin Europeen sur les maladies transmissibles = European communicable disease bulletin.

[7]  D. Fleming,et al.  Lessons from 40 years' surveillance of influenza in England and Wales , 2007, Epidemiology and Infection.

[8]  Nicola Guarino,et al.  An Overview of OntoClean , 2004, Handbook on Ontologies.

[9]  Murat M. Tanik,et al.  A self-updating road map of The Cancer Genome Atlas , 2013, Bioinform..

[10]  Kerina H. Jones,et al.  The SAIL databank: linking multiple health and social care datasets , 2009, BMC Medical Informatics Decis. Mak..

[11]  Thomas R. Gruber,et al.  A translation approach to portable ontology specifications , 1993 .

[13]  K Denecke,et al.  How to Exploit Twitter for Public Health Monitoring? , 2013, Methods of Information in Medicine.

[14]  A. Gallagher,et al.  Cancer recording and mortality in the General Practice Research Database and linked cancer registries , 2013, Pharmacoepidemiology and drug safety.

[15]  Kenji Mizuguchi,et al.  Sagace: A web-based search engine for biomedical databases in Japan , 2012, BMC Research Notes.

[16]  John M. Fonner,et al.  Leveraging the national cyberinfrastructure for biomedical research , 2013, J. Am. Medical Informatics Assoc..

[17]  C. Weel,et al.  The use of routinely collected computer data for research in primary care: opportunities and challenges. , 2006, Family practice.

[18]  Theodoros N. Arvanitis,et al.  An Ontolological Treatment of Clinical Prediction Rules Implementing the Alvarado Score , 2013, EFMI-STC.

[19]  Albert W Wu,et al.  The Role of Informatics in Promoting Patient-Centered Care , 2011, Cancer journal.

[20]  Amit P. Sheth,et al.  An ontology-driven semantic mashup of gene and biological pathway information: Application to the domain of nicotine dependence , 2008, J. Biomed. Informatics.

[21]  Benjamin Littenberg,et al.  Diabetes decision support: initial experience with the Vermont diabetes information system. , 2006, American journal of public health.

[22]  Mike Moore,et al.  Towards an information ecology , 2008 .

[23]  Simon Jones,et al.  Defining datasets and creating data dictionaries for quality improvement and research in chronic disease using routinely collected data: an ontology-driven approach. , 2011, Informatics in primary care.

[24]  M J Lincoln,et al.  Inter-rater reliability and review of the VA unresolved narratives. , 1996, Proceedings : a conference of the American Medical Informatics Association. AMIA Fall Symposium.

[25]  Pradeep Kumar Ray,et al.  Towards an ontology for data quality in integrated chronic disease management: A realist review of the literature , 2013, Int. J. Medical Informatics.

[26]  H Müller,et al.  Health information search to deal with the exploding amount of health information produced. , 2012, Methods of information in medicine.

[27]  Douglas E Green,et al.  Can big data lead us to big savings? , 2013, Radiographics : a review publication of the Radiological Society of North America, Inc.

[28]  A. Boulton,et al.  Evidence-Based Protocol for Diabetic Foot Ulcers , 2006, Plastic and reconstructive surgery.

[29]  S. de Lusignan,et al.  The Evidence-base for Using Ontologies and Semantic Integration Methodologies to Support Integrated Chronic Disease Management in Primary and Ambulatory Care: Realist Review , 2013, Yearbook of Medical Informatics.

[30]  J. Mold Primary Care Research Conducted in Networks: Getting Down to Business , 2012, The Journal of the American Board of Family Medicine.

[31]  Rong Chen,et al.  Archetype-Based Knowledge Management for Semantic Interoperability of Electronic Health Records , 2009, MIE.

[32]  Andrew James,et al.  Big Data in the Intensive Care Unit , 2017, AMIA.

[33]  S. Colantonio,et al.  CHRONIOUS: An open, ubiquitous and adaptive chronic disease management platform for Chronic Obstructive Pulmonary Disease (COPD), Chronic Kidney Disease (CKD) and renal insufficiency , 2010, 2010 Annual International Conference of the IEEE Engineering in Medicine and Biology.

[34]  Courtney Corley,et al.  Social Web mining and exploitation for serious applications: Technosocial Predictive Analytics and related technologies for public health, environmental and national security surveillance , 2010, Comput. Methods Programs Biomed..

[35]  S de Lusignan,et al.  Towards a conceptual framework for evaluating primary care research networks. , 2000, The British journal of general practice : the journal of the Royal College of General Practitioners.

[36]  Keith Marsolo,et al.  An i2b2-based, generalizable, open source, self-scaling chronic disease registry , 2012, J. Am. Medical Informatics Assoc..

[37]  Robert M. Stephens,et al.  Knowledge and Theme Discovery across Very Large Biological Data Sets Using Distributed Queries: A Prototype Combining Unstructured and Structured Data , 2013, PloS one.

[38]  Peter Bodorik,et al.  Sociotechnical architecture for online privacy , 2005, IEEE Security & Privacy Magazine.

[39]  Robert T. Chen,et al.  Emerging Vaccine Informatics , 2011, Journal of biomedicine & biotechnology.

[40]  Steve Feng,et al.  Crowd-sourced BioGames: managing the big data problem for next-generation lab-on-a-chip platforms. , 2012, Lab on a chip.

[41]  Amnon Shabo,et al.  Model Formulation: HL7 Clinical Document Architecture, Release 2 , 2006, J. Am. Medical Informatics Assoc..

[42]  Bill Fox Using big data for big impact. How predictive modeling can affect patient outcomes. , 2012, Health management technology.

[43]  K. Bhaskaran,et al.  Representativeness and optimal use of body mass index (BMI) in the UK Clinical Practice Research Datalink (CPRD) , 2013, BMJ Open.

[44]  G. Nolan,et al.  Computational solutions to large-scale data management and analysis , 2010, Nature Reviews Genetics.

[45]  J J Cimino,et al.  The Practical Impact of Ontologies on Biomedical Informatics , 2006, Yearbook of Medical Informatics.

[46]  Simon de Lusignan,et al.  A system for solution-orientated reporting of errors associated with the extraction of routinely collected clinical data for research and quality improvement , 2010, MedInfo.

[47]  Dylan B. George,et al.  Big Data Opportunities for Global Infectious Disease Surveillance , 2013, PLoS medicine.

[48]  J. Sejvar,et al.  Guillain-Barré syndrome and Fisher syndrome: case definitions and guidelines for collection, analysis, and presentation of immunization safety data. , 2011, Vaccine.

[49]  R Leifer,et al.  Organizational/environmental interchange: a model of boundary spanning activity. , 1978, Academy of management review. Academy of Management.

[50]  Marco Casassa Mont,et al.  Privacy compliance and enforcement on European healthgrids: an approach through ontology , 2010, Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences.

[51]  Mark Dredze,et al.  You Are What You Tweet: Analyzing Twitter for Public Health , 2011, ICWSM.

[52]  A. Howe Is primary care research a lost cause? , 2003, The Lancet.

[53]  Kavishwar B. Wagholikar,et al.  Modeling Paradigms for Medical Diagnostic Decision Support: A Survey and Future Directions , 2012, Journal of Medical Systems.

[54]  Johanne Goudreau,et al.  Priorities for action to improve cardiovascular preventive care of patients with multimorbid conditions in primary care--a participatory action research project. , 2012, Family practice.

[55]  Shaun Treweek,et al.  Methods to improve recruitment to randomised controlled trials: Cochrane systematic review and meta-analysis , 2013, BMJ Open.

[56]  Judith Drenthen,et al.  Diagnosis of Guillain-Barré syndrome and validation of Brighton criteria. , 2014, Brain : a journal of neurology.

[57]  N Hassan Sadek,et al.  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 , 2012, International journal of clinical practice.

[58]  Craig E. Kuziemsky,et al.  A four stage approach for ontology-based health information system design , 2010, Artif. Intell. Medicine.

[59]  H. Mason,et al.  A retrospective analysis of the nature, extent and cost of alcohol-related emergency calls to the ambulance service in an English region. , 2012, Alcohol and alcoholism.

[60]  K. Bhaskaran,et al.  Completeness and usability of ethnicity data in UK-based primary care and hospital databases , 2013, Journal of public health.

[61]  M. Bellis,et al.  Use of fake identification to purchase alcohol amongst 15-16 year olds: a cross-sectional survey examining alcohol access, consumption and harm , 2010, Substance abuse treatment, prevention, and policy.

[62]  Peter Tarczy-Hornoch,et al.  Participatory (re)design of a sociotechnical healthcare delivery system: the Group Health Patient-Centered Medical Home. , 2010, Studies in health technology and informatics.

[63]  Mona Choi,et al.  Nursing Critical Patient Severity Classification System Predicts Outcomes in Patients Admitted to Surgical Intensive Care Units: Use of Data from Clinical Data Repository , 2013, MedInfo.

[64]  J. Narula,et al.  Are we up to speed?: from big data to rich insights in CV imaging for a hyperconnected world. , 2013, JACC. Cardiovascular imaging.

[65]  Diane E. Allan,et al.  Using Quality Improvement to Enhance Research Readiness in Palliative Care , 2006, Journal for healthcare quality : official publication of the National Association for Healthcare Quality.

[66]  Darcy A. Davis,et al.  Bringing Big Data to Personalized Healthcare: A Patient-Centered Framework , 2013, Journal of General Internal Medicine.

[67]  S. de Lusignan Time for research networks to be trained in informatics and based within informatics centres. , 2012, Informatics in primary care.

[68]  K. Fiscella,et al.  Physician Perspectives on Incentives to Participate in Practice-based Research: A Greater Rochester Practice-Based Research Network (GR-PBRN) Study , 2010, The Journal of the American Board of Family Medicine.

[69]  梅屋 崇 海外視察報告 英国 Royal College of General Practitioners(RCGP) , 2012 .

[70]  R. Glasgow,et al.  Patient Assessment of Chronic Illness Care (PACIC) and Improved Patient-centered Outcomes for Chronic Conditions , 2007, Journal of General Internal Medicine.

[71]  David J. Stone,et al.  "Big data" in the intensive care unit. Closing the data loop. , 2013, American journal of respiratory and critical care medicine.

[72]  Brian E. Dixon,et al.  An informatics approach to medication adherence assessment and improvement using clinical, billing, and patient-entered data , 2014, J. Am. Medical Informatics Assoc..

[73]  B. Littenberg,et al.  The Vermont Diabetes Information System (VDIS): study design and subject recruitment for a cluster randomized trial of a decision support system in a regional sample of primary care practices , 2004, Clinical trials.

[74]  C. Kulikowski,et al.  The Challenge of Ubiquitous Computing in Health Care: Technology, Concepts and Solutions , 2005, Methods of Information in Medicine.

[75]  Eivor Oborn,et al.  Leadership of healthcare commissioning networks in England: a mixed-methods study on clinical commissioning groups , 2013, BMJ Open.

[76]  Bill Fox Using big data for big impact. Leveraging data and analytics provides the foundation for rethinking how to impact patient behavior. , 2011, Health management technology.

[77]  Paul F. Uhlir,et al.  Designing the Microbial Research Commons , 2011 .

[78]  S. de Lusignan,et al.  Miscoding, misclassification and misdiagnosis of diabetes in primary care , 2012, Diabetic medicine : a journal of the British Diabetic Association.

[79]  Werner Ceusters,et al.  Towards a Reference Terminology for Ontology Research and Development in the Biomedical Domain , 2006, KR-MED.

[80]  A. Newton,et al.  Impact of the new UK licensing law on emergency hospital attendances: a cohort study , 2007, Emergency Medicine Journal.

[81]  Martin Roland,et al.  Chronic disease management in primary care: from evidence to policy , 2008, The Medical journal of Australia.

[82]  David M. Shotton,et al.  Adventures in Semantic Publishing: Exemplar Semantic Enhancements of a Research Article , 2009, PLoS Comput. Biol..

[83]  György Surján,et al.  Ontological analysis of SNOMED CT , 2008, BMC Medical Informatics Decis. Mak..

[84]  Suzanne Bakken,et al.  Developing, implementing, and evaluating decision support systems for shared decision making in patient care: a conceptual model and case illustration , 2002, J. Biomed. Informatics.

[85]  Melissa Ahern,et al.  Improved clinical outcomes for fee-for-service physician practices participating in a diabetes care collaborative. , 2004, Joint Commission journal on quality and safety.

[86]  G. Lissovoy Big data meets the electronic medical record: a commentary on "identifying patients at increased risk for unplanned readmission". , 2013 .

[87]  Elizabeth Borycki,et al.  Development of a virtual self-management tool for COPD patients: towards a user needs ontology. , 2007, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[88]  P. Bower,et al.  Psychometric properties of the patient assessment of chronic illness care measure: acceptability, reliability and validity in United Kingdom patients with long-term conditions , 2012, BMC Health Services Research.

[89]  A. Bourke,et al.  Feasibility study and methodology to create a quality-evaluated database of primary care data. , 2004, Informatics in primary care.

[90]  J. Hollowell,et al.  The General Practice Research Database: quality of morbidity data. , 1997, Population trends.

[91]  Alejandra Cechich,et al.  An ontology approach to data integration , 2003 .

[92]  Simon de Lusignan,et al.  What are the Barriers to Conducting International Research Using Routinely Collected Primary Care Data? , 2011, EFMI-STC.

[93]  A. Dadich,et al.  Effective recruitment strategies in primary care research: a systematic review. , 2012, Quality in primary care.

[94]  S. Mendis,et al.  Gaps in Capacity in Primary Care in Low-Resource Settings for Implementation of Essential Noncommunicable Disease Interventions , 2012, International journal of hypertension.

[95]  R. Écochard,et al.  How do French GPs consider participating in primary care research: the DRIM study. , 2011, Family practice.

[96]  S de Lusignan,et al.  A knowledge-management model for clinical practice. , 2002, Journal of postgraduate medicine.

[97]  J. Cramm,et al.  Relational coordination promotes quality of chronic care delivery in Dutch disease-management programs. , 2012, Health care management review.

[98]  S. de Lusignan,et al.  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. , 2013, Informatics in primary care.

[99]  Martin McKee,et al.  Measuring the health of nations: analysis of mortality amenable to health care , 2003, BMJ : British Medical Journal.

[100]  Alastair Baker,et al.  Crossing the Quality Chasm: A New Health System for the 21st Century , 2001, BMJ : British Medical Journal.

[101]  Abdul V. Roudsari,et al.  Computerization of workflows, guidelines, and care pathways: a review of implementation challenges for process-oriented health information systems , 2011, J. Am. Medical Informatics Assoc..

[102]  N. Bontis,et al.  THE KNOWLEDGE TOOLBOX: A Review of the Tools Available To Measure and Manage Intangible Resources , 1999 .

[103]  B. Wolffenbuttel,et al.  Adoption of disease management model for diabetes in region of Maastricht , 2001, BMJ : British Medical Journal.

[104]  D. Roblin,et al.  The Potential of Cellular Technology to Mediate Social Networks for Support of Chronic Disease Self-Management , 2011, Journal of health communication.

[105]  Deborah L. McGuinness,et al.  OWL Web ontology language overview , 2004 .

[106]  Rimantas Butleris,et al.  Ontology-based Foundations for Data Integration , 2011 .

[107]  Dario A. Giuse,et al.  Recommendations for the design, implementation and evaluation of social support in online communities, networks, and groups , 2013, J. Biomed. Informatics.

[108]  Craig Standing,et al.  A technology ecosystem perspective on hospital management information systems: lessons from the health literature , 2009, Int. J. Electron. Heal..

[109]  P. Archambault WikiBuild: A New Application to Support Patient and Health Care Professional Involvement in the Development of Patient Support Tools , 2011, Journal of medical Internet research.

[110]  Jean-Karl Soler,et al.  The coming of age of ICPC: celebrating the 21st birthday of the International Classification of Primary Care. , 2008, Family practice.

[111]  S. Casswell Tackling NCDs: a different approach is needed , 2012, The Lancet.

[112]  Angelo Rossi Mori,et al.  Holistic health: Predicting our data future (from inter-operability among systems to co-operability among people) , 2013, Int. J. Medical Informatics.

[113]  S. de Lusignan Informatics as Tool for Quality Improvement: Rapid Implementation of Guidance for the Management of Chronic Kidney Disease in England as an Exemplar , 2013, Healthcare informatics research.

[114]  P. Lopalco,et al.  Vaccine-preventable diseases: the role of the European Centre for Disease Prevention and Control. , 2014, Clinical microbiology and infection : the official publication of the European Society of Clinical Microbiology and Infectious Diseases.

[115]  D. Mohr,et al.  Behavioral intervention technologies: evidence review and recommendations for future research in mental health. , 2013, General hospital psychiatry.

[116]  James T. Walz The Wealth of Knowledge: Intellectual Capital and the Twenty‐First Century Organization , 2005 .

[117]  Claire Snowdon,et al.  Does it matter if clinicians recruiting for a trial don't understand what the trial is really about? Qualitative study of surgeons' experiences of participation in a pragmatic multi-centre RCT , 2007, Trials.

[118]  Hardeep Singh,et al.  Patient access to medical records and healthcare outcomes: a systematic review , 2014, J. Am. Medical Informatics Assoc..

[119]  C. Liddy,et al.  Building the evidence base for chronic disease self-management support interventions across Canada. , 2012, Canadian journal of public health = Revue canadienne de sante publique.

[120]  Simon de Lusignan,et al.  A comparison of English and French Approaches to Providing Patients Access to Summary Care Records: Scope, Consent, Cost , 2013, EFMI-STC.

[121]  Tom Chan,et al.  Problems with primary care data quality: osteoporosis as an exemplar. , 2004, Informatics in primary care.

[122]  Simon de Lusignan,et al.  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. , 2006, Informatics in primary care.

[123]  Vinod Vaikuntanathan,et al.  Can homomorphic encryption be practical? , 2011, CCSW '11.

[124]  Ranjit Bose,et al.  Advanced analytics: opportunities and challenges , 2009, Ind. Manag. Data Syst..

[125]  S de Lusignan,et al.  Managers See the Problems Associated with Coding Clinical Data as a Technical Issue whilst Clinicians also See Cultural Barriers , 2003, Methods of Information in Medicine.

[126]  M. Cupples,et al.  Primary care research networks in the United Kingdom , 2007, BMJ : British Medical Journal.

[127]  Laurel D. Riek,et al.  Contextual Constraints for the Design of Patient-Centered Health IT Tools , 2013, CSHI.

[128]  Jo Røislien,et al.  Reliability and Validity Issues Related to Interactive Tailored Patient Assessments: A Case Study , 2007, Journal of medical Internet research.

[129]  N H Shah,et al.  Translational Bioinformatics Embraces Big Data , 2012, Yearbook of Medical Informatics.

[130]  Nilmini Wickramasinghe,et al.  A Review of User-Centered Design for Diabetes-Related Consumer Health Informatics Technologies , 2013, Journal of diabetes science and technology.

[131]  A. Mainous,et al.  Is family medicine ready to move toward having professional researchers? , 2006, Family medicine.

[132]  Catherine Bartlett,et al.  Twitter and public health. , 2015, Journal of public health management and practice : JPHMP.

[133]  B. Burnand,et al.  The RAND/UCLA Appropriateness Method User's Manual , 2001 .

[134]  L. McCloughan,et al.  Supporting research in primary care: are practice‐based research networks the missing link? , 2006, The Medical journal of Australia.

[135]  Steve Caine,et al.  Developing a large electronic primary care database (Doctors' Independent Network) for research , 2004, Int. J. Medical Informatics.

[136]  Giner Alor-Hernández,et al.  Using ontologies and probabilistic networks to develop a preventive stroke diagnosis system (PSDS) , 2010, 2010 IEEE 23rd International Symposium on Computer-Based Medical Systems (CBMS).

[137]  Neil Bahroos,et al.  Leverage hadoop framework for large scale clinical informatics applications. , 2013, AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science.

[138]  K Ohe,et al.  An ontology-based mediator of clinical information for decision support systems: a prototype of a clinical alert system for prescription. , 2008, Methods of information in medicine.

[139]  N. Taub,et al.  What aspects of primary care predict emergency admission rates? A cross sectional study , 2013, BMC Health Services Research.

[140]  Simon de Lusignan,et al.  The roles of policy and professionalism in the protection of processed clinical data: A literature review , 2007, Int. J. Medical Informatics.

[141]  Mark H. Ellisman,et al.  Data-intensive e-science frontier research , 2003, CACM.

[142]  Bo Sundgren,et al.  Towards an SDMX User Guide: Exchange of Statistical Data and Metadata between Different Systems, National and International , 2006 .

[143]  S. de Lusignan,et al.  The use of routinely collected computer data for research in primary care: opportunities and challenges. , 2006, Family practice.

[144]  Thomas Bodenheimer,et al.  Improving primary care for patients with chronic illness: the chronic care model, Part 2. , 2002, JAMA.

[145]  Daniel J. Vreeman,et al.  The long road to semantic interoperability in support of public health: Experiences from two states , 2014, J. Biomed. Informatics.

[146]  P. Ganz,et al.  Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network , 2011, Journal of cancer survivorship : research and practice.

[147]  Dawn N. Jutla,et al.  Privacy Agents and Ontology for the Semantic Web , 2004, AMCIS.

[148]  Duckjoo Choi,et al.  Review of Semantically Interoperable Electronic Health Records for Ubiquitous Healthcare , 2010, Healthcare informatics research.

[149]  Paul Krause,et al.  Conducting requirements analyses for research using routinely collected health data: a model driven approach. , 2012, Studies in health technology and informatics.

[150]  Julia Adler-Milstein,et al.  Implementing the IT Infrastructure for Health Reform: Adoption of Health IT among Patient-Centered Medical Home Practices , 2013, AMIA.

[151]  Ruth Boaden,et al.  Impact of case management (Evercare) on frail elderly patients: controlled before and after analysis of quantitative outcome data , 2006, BMJ : British Medical Journal.

[152]  Howard E. Aldrich,et al.  Boundary Spanning Roles and Organization Structure , 1977 .

[153]  L. Siminerio,et al.  The Role of Technology and the Chronic Care Model , 2010, Journal of diabetes science and technology.

[154]  Wendy Macdonald,et al.  Promoting patient engagement with self-management support information: a qualitative meta-synthesis of processes influencing uptake , 2008, Implementation science : IS.

[155]  Patricia C. Dykes,et al.  The Current Capabilities of Health Information Technology to Support Care Transitions , 2013, AMIA.

[156]  David Millán-Ruiz,et al.  An Architecture for Next-Generation of Telecare Systems Using Ontologies, Rules Engines and Data Mining , 2008, 2008 International Conference on Computational Intelligence for Modelling Control & Automation.

[157]  Josefien van Olmen,et al.  Is realist evaluation keeping its promise? A review of published empirical studies in the field of health systems research , 2012 .

[158]  Thusitha De Silva Mabotuwana,et al.  An ontology-based approach to enhance querying capabilities of general practice medicine for better management of hypertension , 2009, Artif. Intell. Medicine.

[159]  Michael Klinkman,et al.  Prospects for person-centred diagnosis in general medicine. , 2011, Journal of evaluation in clinical practice.

[160]  Leslie Lenert,et al.  A framework for modeling health behavior protocols and their linkage to behavioral theory , 2005, J. Biomed. Informatics.

[161]  Tom Chan,et al.  The Development of Primary Care Information Technology in the United Kingdom , 2008, The Journal of ambulatory care management.

[162]  Werner Ceusters,et al.  AEO: A Realism-Based Biomedical Ontology for the Representation of Adverse Events , 2011, ICBO.

[163]  Thomas Bodenheimer,et al.  Improving primary care for patients with chronic illness. , 2002, JAMA.

[164]  A. Clark,et al.  Understanding health decisions using critical realism: home-dialysis decision-making during chronic kidney disease. , 2012, Nursing inquiry.

[165]  Christian J. Stoeckert,et al.  Ontology Driven Data Collection for EuPathDB , 2011, ICBO.

[166]  B. Hutchison,et al.  Developing primary care: the contribution of primary care research networks. , 2012, Healthcare policy = Politiques de sante.

[167]  Domenico M. Pisanelli,et al.  Ontologies supporting continuity of care: The case of heart failure , 2006, Comput. Biol. Medicine.

[168]  Bin Zhao,et al.  The Ontology of Vaccine Adverse Events (OVAE) and its usage in representing and analyzing adverse events associated with US-licensed human vaccines , 2013, J. Biomed. Semant..

[169]  Peter Bower,et al.  Short report: how often do UK primary care trials face recruitment delays? , 2007, Family practice.

[170]  Jodi G. Daniel,et al.  A national action plan to support consumer engagement via e-health. , 2013, Health affairs.

[171]  S B Thacker,et al.  Future directions for comprehensive public health surveillance and health information systems in the United States. , 1994, American journal of epidemiology.

[172]  S. de Lusignan,et al.  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. , 2011, Informatics in primary care.

[173]  A. Bourke,et al.  Generalisability of The Health Improvement Network (THIN) database: demographics, chronic disease prevalence and mortality rates. , 2011, Informatics in primary care.

[174]  Heiner Stuckenschmidt,et al.  Ontology-Based Integration of Information - A Survey of Existing Approaches , 2001, OIS@IJCAI.

[175]  S. de Lusignan,et al.  Engaging primary care in CKD initiatives: the UK experience. , 2012, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[176]  G. Velianoff Advancing the Evolution of Healthcare: Information Technology in a Person-Focused Population Health Model , 2014, The Journal of nursing administration.

[177]  Richard M Martin,et al.  Validation of suicide and self-harm records in the Clinical Practice Research Datalink , 2012, British journal of clinical pharmacology.

[178]  Global status report on alcohol and health , 2022 .

[179]  Sourav Bandyopadhyay,et al.  Bringing it all together: big data and HIV research. , 2013, AIDS.

[180]  Ghalib A. Bello,et al.  Engaging Primary Care Patients to Use a Patient-Centered Personal Health Record , 2014, The Annals of Family Medicine.

[181]  Robert A Gabbay,et al.  Role of Health Information Technologies in the Patient-Centered Medical Home , 2013, Journal of diabetes science and technology.

[182]  Bjoern Peters,et al.  VO: Vaccine Ontology , 2009 .

[183]  D. Fleming,et al.  The representativeness of sentinel practice networks. , 2010, Journal of public health.

[184]  B. Mcavoy Primary care research — what in the world is going on? , 2005, The Medical journal of Australia.

[185]  Carol Huston,et al.  The impact of emerging technology on nursing care: warp speed ahead. , 2013, Online journal of issues in nursing.

[186]  Peter Z. Yeh,et al.  Multiple Ontologies in Healthcare Information Technology: Motivations and Recommendation for Ontology Mapping and Alignment , 2011, ICBO.

[187]  Viola Allison,et al.  Metadata and meaningful use. , 2012, Journal of AHIMA.

[188]  Theodoros N. Arvanitis,et al.  Patients’ online access to their electronic health records and linked online services: a systematic interpretative review , 2014, BMJ Open.

[189]  Mindy E. Flanagan,et al.  The next-generation electronic health record: perspectives of key leaders from the US Department of Veterans Affairs. , 2013, Journal of the American Medical Informatics Association : JAMIA.

[190]  Federica Paganelli,et al.  An Ontology-Based System for Context-Aware and Configurable Services to Support Home-Based Continuous Care , 2011, IEEE Transactions on Information Technology in Biomedicine.

[191]  S. de Lusignan,et al.  Incorrect and incomplete coding and classification of diabetes: a systematic review , 2010, Diabetic medicine : a journal of the British Diabetic Association.

[192]  A. Schrijvers,et al.  Integration of care in The Netherlands: the development of transmural care since 1994. , 2001, Health policy.

[193]  Jean Karl Soler,et al.  Reasons for encounter and symptom diagnoses: a superior description of patients' problems in contrast to medically unexplained symptoms (MUS). , 2012, Family practice.

[194]  P. Murray The IMIA strategic plan--towards IMIA 2015. , 2008, Yearbook of medical informatics.

[195]  C M Kilo,et al.  A Framework for Collaborative Improvement: Lessons from the Institute for Healthcare Improvement's Breakthrough Series , 1998, Quality management in health care.

[196]  Donald Berwick,et al.  Developing and Testing Changes in Delivery of Care , 1998, Annals of Internal Medicine.

[197]  G. Guyatt,et al.  Grading quality of evidence and strength of recommendations , 2004, BMJ : British Medical Journal.

[198]  T. Murdoch,et al.  The inevitable application of big data to health care. , 2013, JAMA.

[199]  Chien-Hung Chen,et al.  Heart beats in the cloud: distributed analysis of electrophysiological 'Big Data' using cloud computing for epilepsy clinical research , 2014, J. Am. Medical Informatics Assoc..

[200]  Bengt Åhgren Chain of care development in Sweden: results of a national study , 2003, International journal of integrated care.

[201]  Robert Stevens,et al.  The Protege OWL Experience , 2005, OWLED.

[202]  J. Cramm,et al.  THE CARE SPAN: In The Netherlands, rich interaction among professionals conducting disease management led to better chronic care , 2012 .

[203]  Gina Neff,et al.  Why Big Data Won't Cure Us , 2013, Big Data.

[204]  Dean Giustini Web 3.0 and medicine , 2007, BMJ : British Medical Journal.

[205]  Simon de Lusignan,et al.  Ontologies to Improve Chronic Disease Management Research and Quality Improvement Studies - A Conceptual Framework , 2013, MedInfo.

[206]  J. Protheroe,et al.  Patients’ Experiences of Shared Decision Making in Primary Care Practices in the United Kingdom , 2013, Medical decision making : an international journal of the Society for Medical Decision Making.

[207]  Taxiarchis Botsis,et al.  Application of Information Retrieval Approaches to Case Classification in the Vaccine Adverse Event Reporting System , 2013, Drug Safety.

[208]  Balakrishnan Chandrasekaran,et al.  What are ontologies, and why do we need them? , 1999, IEEE Intell. Syst..

[209]  S. de Lusignan,et al.  Reductions in risk factors for secondary prevention of coronary heart disease by ethnic group in south-west London: 10-year longitudinal study (1998-2007). , 2010, Family practice.

[210]  Carmel M. Martin,et al.  Person-centred health care: a critical assessment of current and emerging research approaches. , 2014, Journal of evaluation in clinical practice.

[211]  S. de Lusignan,et al.  Variation in the recording of diabetes diagnostic data in primary care computer systems: implications for the quality of care. , 2009, Informatics in primary care.

[212]  J. Affeldt,et al.  The feasibility study , 2019, The Information System Consultant’s Handbook.

[213]  Cathy Chan,et al.  General practice and social service partnership for better clinical outcomes, patient self efficacy and lifestyle behaviours of diabetic care: randomised control trial of a chronic care model , 2011, Postgraduate Medical Journal.

[214]  Michel Gagnon,et al.  Ontology-based integration of data sources , 2007, 2007 10th International Conference on Information Fusion.

[215]  Samina Raza Abidi A Conceptual Framework for Ontology Based Automating and Merging of Clinical Pathways of Comorbidities , 2008, K4HelP.

[216]  Alan Ruttenberg,et al.  The Logic of Surveillance Guidelines: An Analysis of Vaccine Adverse Event Reports from an Ontological Perspective , 2014, PloS one.

[217]  S de Lusignan,et al.  Big Data Usage Patterns in the Health Care Domain: A Use Case Driven Approach Applied to the Assessment of Vaccination Benefits and Risks , 2014, Yearbook of Medical Informatics.

[218]  S. Reis,et al.  Electronic health record training in undergraduate medical education: bridging theory to practice with curricula for empowering patient- and relationship-centered care in the computerized setting. , 2014, Academic medicine : journal of the Association of American Medical Colleges.

[219]  C. Herbert Future of Research in Family Medicine: Where To From Here? , 2004, The Annals of Family Medicine.

[220]  Cheryl Bagley Thompson,et al.  Review Paper: The Evolution of Definitions for Nursing Informatics: A Critical Analysis and Revised Definition , 2002, J. Am. Medical Informatics Assoc..

[221]  J. Brownstein,et al.  Digital disease detection--harnessing the Web for public health surveillance. , 2009, The New England journal of medicine.

[222]  M. Bellis,et al.  Data sharing for prevention: a case study in the development of a comprehensive emergency department injury surveillance system and its use in preventing violence and alcohol-related harms , 2011, Injury Prevention.

[223]  M. Stewart,et al.  You and your EMR: the research perspective: part 4. Optimizing EMRs in primary health care practice and research. , 2012, Canadian family physician Medecin de famille canadien.

[224]  L. Green,et al.  Applying health information technology and team-based care to residency education. , 2011, Family medicine.

[225]  J. Peters,et al.  Factors influencing the length of hospital stay among patients resident in Blackpool admitted with COPD: a cross-sectional study , 2012, BMJ Open.

[226]  D. Protti,et al.  Adoption of information technology in primary care physician offices in New Zealand and Denmark, part 5: final comparisons. , 2009, Informatics in primary care.

[227]  Ioanna Chouvarda,et al.  An ontology-based approach facilitating unified querying of biosignals and patient records , 2008, 2008 30th Annual International Conference of the IEEE Engineering in Medicine and Biology Society.

[228]  S de Lusignan,et al.  Key Concepts to Assess the Readiness of Data for International Research: Data Quality, Lineage and Provenance, Extraction and Processing Errors, Traceability, and Curation , 2011, Yearbook of Medical Informatics.

[229]  Carol A. Enderlin,et al.  Review of current conceptual models and frameworks to guide transitions of care in older adults. , 2013, Geriatric nursing.

[230]  Kei-Hoi Cheung,et al.  Web GIS in practice VI: a demo playlist of geo-mashups for public health neogeographers , 2008, International journal of health geographics.

[231]  Craig Jones Laboratories of primary care: practice-based research networks in Canada. , 2006, Canadian family physician Medecin de famille canadien.

[232]  A. Darzi,et al.  Harnessing the cloud of patient experience: using social media to detect poor quality healthcare , 2013, BMJ quality & safety.

[233]  Patty Kostkova,et al.  Using UMLS to map from a library to a clinical classification: Improving the functionality of a digital library. , 2006, Studies in health technology and informatics.

[234]  José Maria Paganni,et al.  Evaluating the quality of medical care. , 1966, The Milbank Memorial Fund quarterly.

[235]  David Reeves,et al.  Improvements in quality of clinical care in English general practice 1998-2003: longitudinal observational study , 2005, BMJ : British Medical Journal.

[236]  Tim Benson,et al.  Why general practitioners use computers and hospital doctors do not—Part 1: incentives , 2002, BMJ : British Medical Journal.

[237]  David Stables,et al.  QRESEARCH: a new general practice database for research. , 2004, Informatics in primary care.

[238]  Simon de Lusignan,et al.  Breaking the first law of informatics: the Quality and Outcomes Framework (QOF) in the dock. , 2006, Informatics in primary care.

[239]  Diego Calvanese,et al.  Linking Data to Ontologies , 2008, J. Data Semant..

[240]  P. Lopalco,et al.  Actual immunization coverage throughout Europe: are existing data sufficient? , 2014, Clinical microbiology and infection : the official publication of the European Society of Clinical Microbiology and Infectious Diseases.

[241]  C. Duffield,et al.  Nursing staffing, nursing workload, the work environment and patient outcomes. , 2011, Applied nursing research : ANR.

[242]  David Madigan,et al.  Multiple Self‐Controlled Case Series for Large‐Scale Longitudinal Observational Databases , 2013, Biometrics.

[243]  T Desombre,et al.  Business Process Modelling is an Essential Part of a Requirements Analysis , 2012, Yearbook of Medical Informatics.

[244]  Thomas Abel,et al.  The WHO report “Preventing Chronic Diseases: a vital investment” and us , 2005, Sozial- und Präventivmedizin.

[245]  S. Teasdale,et al.  Generating information from electronic patient records in general practice: a description of clinical care and gender inequalities in coronary heart disease using data from over two million patient records. , 2003, Informatics in primary care.

[246]  Francesco Carlo Morabito,et al.  Ontology Based Personalized Modeling for Type 2 Diabetes Risk Analysis: An Integrated Approach , 2009, ICONIP.

[247]  Laura M. Roa,et al.  Empowering citizens with access control mechanisms to their personal health resources , 2013, Int. J. Medical Informatics.

[248]  Adam Barker,et al.  Undefined By Data: A Survey of Big Data Definitions , 2013, ArXiv.

[249]  D. Baer,et al.  Patient-physician e-mail communication: the kaiser permanente experience. , 2011, Journal of oncology practice.

[250]  Renee F Wilson,et al.  Enabling patient-centered care through health information technology. , 2012, Evidence report/technology assessment.

[251]  S. de Lusignan Codes, classifications, terminologies and nomenclatures: definition, development and application in practice. , 2005, Informatics in primary care.

[252]  T. Daaleman,et al.  Embedding Care Management in the Medical Home , 2014, Journal of primary care & community health.

[253]  J Harvey,et al.  Reflections from organization science on the development of primary health care research networks. , 2001, Family practice.

[254]  James J Cimino,et al.  Collect once, use many. Enabling the reuse of clinical data through controlled terminologies. , 2007, Journal of AHIMA.