1. Pathways, protocols, guidelines, decision support RCN 12 February 2004 Colin Gordon Director, NHSIA Disease Management Systems Programme Health Informatics Manager, Royal Brompton Hospital colinngordon@aol.com

2. Evidence Policy, process and practice Guideline Protocol/ pathway

3. Clinical Practice Guidelines "Systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances" Institute of Medicine, 1990 [Field & Lohr 1992 p 27]

6. Are clinical guidelines effective? Russell and Grimshaw, Lancet, 1993: "We have identified 59 published evaluations of clinical guidelines that met defined criteria for scientific rigour... All but 4 of these studies detected significant improvements in the process of care after the introduction of guidelines and all but 2 of the 11 studies that assessed the outcome of care reported significant improvements"

7. What makes guideline-based quality initiatives effective? Development: User involvement in guideline development Implementation: Patient-specific reminder at time of consultation Dissemination: Specific education intervention [Russell and Grimshaw 1993]

8. Protocol Local Protocols [What is Protocol-Based Care? UK DoH 2002] These are the detailed descriptions of the particular steps taken in the process of delivering care or treatment to a patient, sometimes referred to as the care pathway. They are designed at local level to implement national standards, or, by using the best available evidence, to determine care provision. Protocols are developed on a multi-disciplinary basis, reflecting local services and staffing arrangements, and integrate the care provided by different groups or different organisations. They include specific information on who carries out key parts of the care or treatment, and where that should be delivered. Protocols also usually incorporate decision support systems that help the practitioner make decisions about the appropriate care for specific clinical circumstances.

12. Integrated Care Pathway An integrated care pathway determines locally agreed, multidisciplinary practice based on guidelines and evidence where available, for a specific patient/client group. It forms all or part of the clinical record, documents the care given and facilitates the evaluation of outcomes for continuous quality improvement. National Pathways Association (UK) 2001 An Integrated Care Pathway or ICP describes a process within health and Social Care, which maps out a pre-defined set of activities and records care delivered and the variations between planned and actual care. ICPs will be used to support "whole systems" processes spanning Primary Care and Secondary Care service boundaries. ICRS OBS Part 2, 2003

13. Protocol / ICP A protocol is an ICP if it… is local, agreed, mulidisciplinary forms part of the care record captures variances

14. Points about care pathways An actually existing, widely used mainly paper technology Basically a proforma/checklist with some embedded rules and exception recording Commonly focussed on one task in one place for one time period – e.g. day-case elective surgery Locally developed NeLH has an RCN database of 2000+ locally developed pathways with 200+ full-text examples at http://www.nelh.nhs.uk/carepathways/ http://www.nelh.nhs.uk/carepathways/ Useful listserver group http://www.smartgroups.com/groups/clinicalpathways http://www.smartgroups.com/groups/clinicalpathways

15. Some useful NHS websites  NeLH Guidelines Finder http://www.nelh.nhs.uk/guidelinesfinder/ (includes pages on guideline development and appraisal) http://www.nelh.nhs.uk/guidelinesfinder/  NeL for Protocols and Care Pathways http://www.nelh.nhs.uk/carepathways/ (includes Care Pathways Know-How Zone ) http://www.nelh.nhs.uk/carepathways/  NHS Modernisation Agency (Changing Workforce Programme) : Protocol-Based Care resources http://www.modernnhs.nhs.uk/scripts/default.asp?site _id=53 http://www.modernnhs.nhs.uk/scripts/default.asp?site _id=53

16. Why are governments keen on care pathways? Multidisciplinary – flexible working Patient-centredness Evidence-based / guideline-based – means to get guidelines into use Quality management, risk reduction Vision of integrated disease management and care system across care episodes and sectors

17. Why are health professionals keen on care pathways? Tool for joined-up working Checklist / reminder – basic decision support Simple shared record (usually paper-based) Record of variance enabling audit

18. Some limits of ICPs as a health technology ‘Integrated’ means what? In practice now it mainly means: one place, one task, one time, one team – pathways are local institutions Costs and difficulties of organizing detailed local consensus

19. Care Pathways as a corporate-aspirational concept Aspirations: Patient-centredness Joined-up interdisciplinary care IT geared to service improvement IT responsive to clinical requirement Advantages: Attractive to diverse constituencies Risks: ’pathways’ can mean anything Ambiguity, contradiction, multiple vague promises

20. Some agendas for IT and Care Pathways The e-proforma Sharing information along the pathway Patient ownership and access Who is on what pathway Alerts, reminders Tracking the patient journey – ‘where’s Wally?’ Guiding the GP through the specialist maze Writing and monitoring the personal care plan

21. Some recent IT work Data, prompts, knowledge Mapping pathways in chrionic disease managment Specifying national and local pathways; process + datasets

22. Designing clinical front end Data entry / access (sets of tabbed pages) To do list Prompts/alerts on intended actions Acess to local protocol/ knowledge sources

24. Chronic disease Management Mapping steps between regimens over time – an astrhma guideline

25. Supporting chronic disease management: adult asthma

26. National pathways A website showing a recommended dataset for chest pain clinics as a sample web proforma

28. Specifying datasets in XML Standard specification schema Machine-readable format

30. Industry standards CEN and HL7 have created international HI standards Message format standards can be used to define pathways Standard specifications allow cross-platform interoperability along pathways

32. 2 layers of pathway definition Mapping the process Defining data use against process segment

33. Referral proforma Call/recall systems for chronic disease management Placed on heart failure register Stabilisation Initiation of Beta blocker &/ spironolactone Up-titration of drugs Initiation of treatment with ACE and diuretics Requires further investigations Preliminary conclusions ? LVSD Heart failure clinic Primary care Either Secondary care Further treatment LV systolic dysfunction Transfer of referral data and e-booking Summary of conclusions from heart failure clinic Single message to put on register a* Sheet 1 Sheet 2 Sheet 4 Sheet 3 a*: if continuing care to be in acute trust initiates appropriate arrangements. If to be primary care initiates request message to 1y care to book patient into their clinic IP admission Yes No Discovered to have heart failure in OPD Heart failure suspected