Interoperability: joining up knowledge and information in the health sector

THE ISSUES

The complexity of managing information and knowledge in the health sector is astonishing. Attempts at a "technology fix" have often come notoriously and expensively unstuck on such issues as the electronic patient record, confidentiality and accuracy in clinical communication, management of care pathways, coordination between the worldviews and vocabularies of diverse medical and scientific specialists, confidentiality and governance.

Under the Labour government, the NHS National Programme for IT (NPfIT) and Connecting for Health (CfH) attempted to deliver an ambitious grand plan: a communication backbone and a single unified system of secure electronic care records for patients, encompassing 300 hospitals and 30,000 General Practitioners. Seven years and several billion pounds later, the programme is mired in controversy, and the Coalition government is now pushing a radically different vision of diverse local health informatics systems "liberated" from the grand plan, with patients managing more of their own information.

But however the technical systems are implemented, the overarching issue is still Interoperability - the ability to pass health information around seamlessly and without loss of meaning, context or accuracy between all the health providers who may be engaged in an individual's care. It cries out for open and well-documented standards and protocols and controlled vocabularies. It requires that some working practices and attitudes should change, while avoiding technology fixes that don't fit in with how doctors actually work. And now there is also the challenge of opening up the system in ways that empower patients.

THE AGENDA

In this ISKO UK meeting, held appropriately on the premises of The King's Fund, we looked at several important emerging areas of Health Informatics practice. The focus was on how clinical information is recorded, encoded for storage and retrieval, purged of ambiguity, imbued with relevance to patient and practitioner alike, and linked up to the universe of biomedical knowledge.

• Ewan Davis, a health informatics consultant, presented an overview of the informatics landscape in UK healthcare, and the challenges (and progress being made) in joining up knowledge and information to deliver better, safer, more convenient and cost-effective healthcare. In particular he will address issues of problem definition, interoperability, and clinical and information governance.
• Ian Lewin, a text mining specialist currently working for the European BioInformatics Institute, described the issues, and some of the solutions, involved in linking up biomedical and health related scientific literature with publicly available databases and ontologies. The talk was illustrated with examples from an ongoing project: the enhancement of the literature content of UK Pubmed Central (the UK's own large free online resource of biomedical and health related information) with links to other non-textual resources.
• Ian Herbert, Vice-Chair of BCS Health, described how the medical professions use codes and controlled vocabularies to embed unambiguous definitions of medical conditions and procedures in the patient record. NHS Clinical Terms (Read codes) have been widely adopted by GPs and now the push is towards the vastly more capable (but also more complicated) SNOMED-CT, the Systematized Nomenclature of Medicine - Clinical Terms.
• Ann Wrightson of the NHS Wales Informatics Service, who has for years been part of the XML developer community and since 2009 chaired the HL7 UK Technical Committee, asks "How much clinical terminology is good for you?" Purist views range from regarding full expression in SNOMED as the only useful thing to do, to the acceptance of scanned documents (with a light sprinkle of metadata) as quite good enough, thank you. As ever, real projects steer a middle way through numerous trade-offs. Her talk presents a personal perspective with examples from recent work in NHS Wales.
• Dr Mohammad Al-Ubaydli is a clinician and researcher in medical software, and the author of five books including "Personal Health Records, a guide for clinicians". He is the founder of Patients Know Best, a company offering secure Web-based tools integrated into the NHS Connecting for Health network so that patients with complex, long-term needs can collaborate with clinicians and carers. He talked about "Knowledge Management when the patient is in control of the records."
• Martin Whittaker of Touchstone Consultancy has worked on a range of NPfIT projects around data communications standards in the NHS, and sits on the HL7 UK board. Martin talked us through the issues raised in a recent paper which he co-authored for the Healthcare Group of Intellect UK, an IT systems supplier organization. Entitled "We Should Talk - Interoperability and the NHS", the paper gives a critical welcome to a CfH initiative called the Interoperability Toolkit (ITK), but argues for taking it out of the closet and opening it to greater engagement from potential users and suppliers.

PROGRAMME

Where they are available, links have been provided under each abstract as follows:
or slide presentation
sound recording

13.45	Registration
14.00	Welcome from ISKO-UK Judi Vernau and Conrad Taylor
14.10	Overview of interoperability challenges for the health sector Ewan Davis
14.40	Linking scientific literature with public databases and ontologies Ian Lewin
15.10	Healthcare terminologies: from Read Codes to SNOMED Ian Herbert
15.40	Refreshments
16.20	How much clinical terminology is good for you? Ann Wrightson
16.50	Knowledge management when the patient is in control of the records Mohammad Al-Ubaydli
17.20	‘We should talk’ – Interoperability and the NHS Martin Whittaker
17.50	Close of formal proceedings
18.00	Networking, wine and nibbles

BRIEF SPEAKER BIOGRAPHIES

Ewan Davis is an independent consultant who has worked in healthcare informatics for over 30 years. He was previously founder and CEO of one of the larger UK GP systems suppliers and has twice been Chairman of the industry trade association; he was Chairman of the British Computer Society Primary Health Care Specialist Group (BCS PHCSG) and is currently the Treasurer of BCS Health. His clients have included leading players in industry, academia, the NHS and government.

Ian Lewin is a text mining specialist currently working for the European BioInformatics Institute. He has worked in academia and industry for many years applying natural language processing techniques to real world problems.

Ian Herbert is an independent health informatician, specializing in business analysis and modelling, electronic message design, terminology and the electronic patient record. A BCS Fellow, Ian is vice-chair (partnerships) of BCS Health, a member of the BCS Primary Healthcare Specialist Group Committee, and convenor of its Clinical Computing group (CLICSIG). He is an editor of Informatics in Primary Care, a member of the BCS Information Privacy Expert Panel and a board member of the UK Faculty of Health Informatics.

Ann Wrightson is a member of the Enterprise Architecture team in the NHS Wales Informatics Service, with a specific interest in information architecture and data standards including the implementation of terminology standards. She is also Technical Committee Chair of HL7 UK.

Martin Whittaker is an IT and management consultant specializing in healthcare technology issues. He has been a programmer, project manager, sales manager and has run companies supplying IT systems to the healthcare market. As a consultant he has worked for suppliers, health trusts and many parts of the Department of Health's National Programme. Martin is also a member of the Intellect Healthcare Council and of the management board of HL7 UK.