last update : August 2012

Introduction:
The Primary Care Informatics Working Group (PCI WG) aims to promote the further development of this emerging scientific discipline [1,2]. We are always keen to welcome new members and to encourage international debate and discussion. We have managed to publish papers based on our workshops over the last three years and intend to continue this.

Objectives:
The aim of the group remains to promote and develop primary care informatics as a specialism within health/medical informatics:

• To advance international cooperation and the dissemination of information in primary care informatics
• To promote high standards in the application of primary care informatics
• To promote research and development to develop a core generaliseable theory for primary care informatics
• To encourage high standards in education in health informatics

Themes:
To help achieve its objectives the activities of the working group are to be focussed around defined themes [7]. The list is not mandatory and other themes can be added or removed depending on the wishes of the group. However its aim is to maintain focus, and make it more likely that the group will achieve some useful outcomes.

• Data quality:
  Exploring the barriers to the coding of structured information in Primary Care and how these may be overcome. This work includes data quality initiatives.
• The use of computers in patient-centred consultations:
  Primary care is delivered through consultations. Usually these are one-to-one encounters between the patient and the healthcare professional. Use of the computer tends to interfere with the patient centred tone of the consultation. The challenge is to develop technology that supports patient centred consulting.
• e-Health initiatives:
  Telemedicine and telemonitoring of patients in their own homes has been demonstrated in a wide range of clinical settings. They are slowly being integrated into mainstream practice. The working group will wish to explore the characteristics of the scalable e-health initiative, and how it can be implemented in primary care.
• Knowledge management for primary care:
  Information overload is a real phenomenon in clinical practice. Primary care professionals need to know where to look for information rather than hold it themselves: we need to develop an appropriate knowledge management strategy for primary care.

Activities
We aim to put on workshops and contribute to the programme at every major EFMI (European Federation for Medical Informatics) event. We also aim to publish outputs from these. Our two current themes are: (1) How to model research studies based on routinely collected data; (2) Ontologically rich approached to case finding in routine data.

Highlights for the PCI WG 2010/2012:

• MEDINFO 2010 South Africa
  The working group put on two workshops at this event – one on the use of the computer in the consultation and the second on the barriers to using routine data for international research. The outputs from this informed our submission to the IMIA Yearbook of Medical Informatics, see later in the report.

• STC 2011 Slovenia
  From these and the discussions post conference emerged a submission to the STC (Special Topic Conference) in Slovenia in 2011, and a further workshop at MIE in Oslo at the end of August 2011. We have begun to recognise that part of the standard approach to research studies using routine data should be to develop and model use cases for the study; (we have used Unified Modelling Language (UML) to do this and also constructed data flow diagrams (DFD). We are beginning to recognise that there are generic models for some types of study which can be represented using reference models. Our first versions of these can be found at: http://www.clininf.eu/refmodel/

• MIE 2011 Norway
  We extended this work at our workshop at MIE in Oslo August 2011. This involved international collaboration including a guest presenter (Dr. Chris Pearce) from Australia. The presentation from this workshop can be downloaded from the Clinical Informatics website at: http://www.clininf.eu/news/presentations/116-mie2011oslo-presentation.html

• EFMI STC 2012 Moscow
  : Two papers emanating from working group will be part of the conference. The working group chair has co-authored a paper with Prof Matthew Swindells (who holds a visiting chair at University of Surrey) and was previously head of the English National Programme for IT. Olga Dmitrieva presents work on how the English NHS Hospital Episode Statistics (HES) data can be used to explore variation in the quality of care.

• MIE 2012 Italy
  We have had a workshop accepted at MIE2012 in Italy. This explores how we could improve the design of research and quality improvement studies using routine data by using ontologically rich approaches to identifying variables. The workshop objective is to develop consensus methods of consistent extraction and processing of data. The workshop will include brief presentations on: (1) Capturing context by defining the domain ontology; and definition of a reference terminology; (2) Modelling data and metadata mechanisms; (3) Formalisation and otology development tools; (4) Validation of data quality ontology; and (5) Governance framework. There will be a post workshop modified Delphi exercise to define and model these components into a usable toolkit that can be made available through the working group. Publications in the Yearbook of Medical Informatics 2011: We have achieved two publications in the IMIA Yearbook developed from our MEDFINFO workshops. We hope that these will help standardise the way that we report observational studies of the computer in the consultation and help model the barriers to linking routine data in research.

• Yearbook of Medical Informatics 2012
  : We have submitted a paper on how to requirements analyses using routine data. This builds on our modelling work within the working group. With more and more research being carried out using routine data, often primary care data but more and more often linked data – research protocols need to be adapted and move with the times.

  We suggest how generic reference models for research projects should exist at four levels and be part of standard research protocols:

• Rich pictures /schema to give an overview
• Data flow diagrams (DFD) to document where data used in a research project originate and to describe the data flows during a research project
• Unified Modelling Language (UML) use-case diagrams to capture the processes within a research project
• Business process models modelled using business process modelling notation (BPMN) to capture the barriers to project participation.

• Journal
  : Informatics in Primary Care remains the journal of choice for the working group. The publishers offer working group members a discount on subscriptions. http://www.radcliffe-oxford.com/journals/J12_Informatics_in_Primary_Care/default.htm

• Summer School – SISS 2012
  How to measure quality and outcomes using routine data:
  We are holding a summer school 9th to 14th July. Further details and enrolment at: http://clininf.eu/siss2012 Or contact Natalie Berge This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Special discount for EFMI members who book before 1st May.

  References:
  

  
  
  • de Lusignan S. What is primary care informatics? J Am Med Inform Assoc. 2003;10(4):304-9
    
  • de Lusignan S, Pearce C, Shaw NT, Liaw ST, Michalakidis G, Vicente MT, Bainbridge M, International and European Medical Informatics Association and Federation Primary Care Informatics Working Groups. What are the barriers to conducting international research using routinely collected primary care data? Stud Health Technol Inform. 2011;165:135-40.
    
  • Swindells M, de Lusignan S. Lessons from the English National Programme for IT about Structure, Process and Utility. Stud Health Technol Inform. 2012;174:17-22.
    
  • Dmitrieva O, Michalakidis G, Mason A, Jones S, Chan T, de Lusignan S. Consistent Data Recording across a Health System and Web-Enablement Allow Service Quality Comparisons: Online Data for Commissioning Dermatology Services. Stud Health Technol Inform. 2012;174:84-8.
    
  • de Lusignan S, Liaw ST, Rahimi AR, Poh H, Jones S, on behalf of the working group. Improving the design of research and quality improvement using routine data in chronic disease: ontology driven approach. Accepted as a workshop MIE 2012 Italy.
    
  • de Lusignan S, Pearce C, Kumarapeli P, Stavropoulou C, Kushniruk A, Sheikh A, Shachak A, Mendis K. Reporting Observational Studies of the Use of Information Technology in the Clinical Consultation A Position Statement from the International Medical Informatics Association Primary Care Informatics Working Group (IMIA PCI WG). Yearb Med Inform. 2011;6(1):39-47.
    
  • de Lusignan S, Liaw S-T, Krause P, Curcin V, Vicente M, Michalakidis G, Argreus L, Leysen P, Mendis K. Key concepts to assess the readiness of data for International research: Data quality, lineage and provenance, extraction and processing errors, traceability, and curation. Yearb Med Inform. 2011;6(1):112-20.
  • de Lusignan S. What is primary care informatics? J Am Med Inform Assoc. 2003;10(4):304-9.
  • de Lusignan S. Introduction to the Primary Care Informatics Working Group of the European Federation for Medical Informatics (EFMI). Informatics in Primary Care. 2003;11(3):175-6.
  • de Lusignan S, Metsemakers JF, Houwink P, Gunnarsdottir V, van der Lei J. 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. 2006;14(3):203-9.
  • Eds. Bryden J, de Lusignan S, Blobel B, Petroveki M. Medical Informatics in an Enlarged Europe. Proceedings of the European Federation for Medical Informatics Special Topic Conference. Berlin; Akademische Verlagsgesellschaft Aka (Aka-Verlag), 2007.
  • [6] de Lusignan S, Teasdale S, Little D, Zapp J, Zuckerman A, Bates D, Steele A. Comprehensive computerised primary care records are an essential component of any national health information strategy: report from an international consensus conference. Informatics in Primary Care 2004:13(4):255-64.

  Chair:
  Prof. Simon de Lusignan
  Professor of Primary Care & Clinical Informatics
  University of Surrey, GUILDFORD, GU2 7PX, UK
  E-mail: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it