Care Pathways, NSFs and the Integrated Care Records Service

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Care Pathways, NSFs and the Integrated Care
Records Service

• Colin Gordon
•  
• Director, NHSIA Disease Management Systems
  ProgrammeHealth Informatics Manager, Royal
  Brompton Hospital
• colinngordon_at_aol.com
• Clive Griffith
• Breast Surgeon,Newcastle upon Tyne
• National Deputy Clinical Lead of the Cancer
  Services Collaborative
• Clive.Griffith_at_nuth.northy.nhs.uk

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1. Informatics and protocols

• Starting points
• Guideline
• Protocol
• Care pathway

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1. Clinical Practice Guideline

• "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

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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"

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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

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2. Protocol

• Local Protocols
•  
• 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.
• designed at local level to implement national
  standards, or, by using the best available
  evidence, to determine care provision.
•  
• developed on a multi-disciplinary basis,
  reflecting local services and staffing
  arrangements, and integrate the care provided by
  different groups or different organisations.
• 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.
• - What is Protocol-Based Care? UK DoH 2002
• www.modernnhs.nhs.uk/protocolbasedcare

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3. 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) c 2001

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Points about care pathways

• An actually existing, widely used mainly paper
  technology
• Basically a proforma/checklist with some embedded
  rules
• Commonly focussed on one task in one place for
  one time period e.g. day-case elective surgery
• Locally developed
• NeLH has a database of 2000 locally developed
  pathways with 200 full-text examples at
  http//www.nelh.nhs.uk/carepathways/

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Some useful NHS websites

• NeLH Guidelines Finder http//www.nelh.nhs.uk/guid
  elinesfinder/ (includes pages on guideline
  development and appraisal)
• NeL for Protocols and Care Pathways
  http//www.nelh.nhs.uk/carepathways/ (includes
  Care Pathways Know-How Zone )
• NHS Modernisation Agency (Changing Workforce
  Programme) Protocol-Based Care resources
  http//www.modernnhs.nhs.uk/scripts/default.asp?si
  te_id53

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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

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Why are (some) healthcare 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

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2. IT support for the breast cancer patient
journey

• Clive Griffith
• Breast surgeon,Newcastle upon Tyne
• National Deputy Clinical Lead of the Cancer
  Services Collaborative

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Patient complaints re their cancer journey

• Uncertainty
• loss of control
• lack of information
• difficulties in finding sources of useful
  information

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Complaints from the GP

• Not knowing the diagnosis of cancer when it is
  made
• Not knowing the treatment plan decided by the MDT
  meeting
• Not knowing the side effects of treatment
• Not knowing when treatment will start and finish

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Complaints from the GP

• Not knowing
• The diagnosis when it is confirmed
• The treatment plan when formulated by the MDT
  meeting
• Start and finish of Rx
• Side effects of treatments

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IT support for the breast cancerpatient journey
Breast audit
E mail
surgery
MDM
Adj.Rx
One stop clinic
Patient with lump
GP
E mail
Follow up
Electronic links to breast cancer journey
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What the patient wants

• Definite clinic appointment time at GP surgery
  visit
• what happens at clinic
• definite diagnosis in clinic of cancer/not cancer
• MDM treatment plan
• dates of treatment

• Side effects of treatment
• next FU appointment
• mammo report straight to patient
• red box system in electronic form to avoid
  mammos for dead patients!

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What the breast surgeon wants

• Date for surgery and pre admission clinic
• cytology results
• pathology (core biopsy)
• Adjuvant treatment letters
• MDM Rx decision
• referral to medical and clinical oncologist from
  MDM

• Clinical trials
• results direct to FU clinic ie pathology,cytology,
  bone scans,liver scans,CXR etc.
• record data once only
• audit trail

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What the GP wants

• Definite appointment within 2 weeks
• give patient appointment in GP surgery at time of
  referral
• diagnosis when it is made in clinic
• details of surgical treatment

• Date of MDM and treatment decisions
• likely side effects and complications of
  treatment
• prognosis
• dates of treatments
• events ie local recurrence,distant recurrence etc

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Hospital trust

• Compliance with 2 week rule
• diagnosis of cancer/not cancer
• date to first definitive treatment
• date to chemo
• date to radiotherapy

• Patient demographics
• which PCT did patient come from

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MDT meeting members

• Patient details
• pathology report
• cytology report
• x-ray reports
• scan results
• pre book 1st chemo
• pre book 1st radiotherapy Rx

• Record treatment plan and link with audit
• MDT meeting plan to GP and patient(demystified)

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Breast cancer audit

• Total number of referrals to cancers detected
• breast cancer from screening or symptomatic
  service
• annual FU OK
• local or distant relapse
• death

• Datessurgery type
• diagnosis
• MDM
• start chemo
• start XRT
• start endocrine Rx
• link letters from new and FUclinics to audit

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3. The NHSIA Disease Management Systems Programme

• Background
• ICRS and National Service Frameworks (see
  http//www.nelh.nhs.uk/nsf/ )
• Care pathways in NSFs as foci for Care record
  development
•  
• NSF Information Strategies
• e.g. Diabetes - http//www.doh.gov.uk/ipu/strateg
  y/nsf/5.htm
• NeLH as knowledge service for ICRS
• NeL of Protocols and Care Pathways
• NeLH Guidelines Database
• NeLH Digital Pathways study (C McMay, 2002)

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Aims

• Show how to specify and commission ICRS
  capability to support care pathways in NSFs
• 4 examplar sites with national clinical leads
• Newcastle Breast Cancer Clive Griffith
• Salford Diabetes Bob Young
• NW London CHD Mark Dancy
• Walsall Heart Failure Martin Cowie
• Managed by Royal Brompton and Harefield NHS Trust
• Lead technical consultant Ramsey Systems Ltd (C
  McCay)

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Health informatics and guidelines - some brief
history

• Oncocin - Musen/Shortliffe - Stanford c 86
• DILEMMA - EU - 91-94
• Prestige - EU - 95-99
• PRODIGY UK 97-gt
• GLIF - USA et al 1997-gt
• EON, PROTÉGÉ, ASGAARD - Stanford 1995-gt
• Prompt/ PROFORMA UK 1995-gt
• NeLH-Guidelines UK 2000-gt
• HL-7 working group on decision support 2000-gt

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Managing Stable Angina Royal Brompton Hospital,
London and Bromley Hospital
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Levels of decision support(Muir Gray, 2002)

• Level 1 assisted access to relevant knowledge
• Level 2 patient-specific prompt at given points
  in a pathway
• Level 3 expert-level advice on decision-making
• Evidence that level 2 works
• Hunt, D.L., Haynes, R.B., Hanna, S.E. and Smith,
  K.
• Effects of computer-based clinical decision
  support systems on physician performance and
  patient outcomes.
• JAMA 1998 280 1339-46.

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Technical architecture for supporting
protocol-based care
Operational Front End
Recommendations
Clinical management activities data display
and capture
Care Plan View / Manage Protocols in use
Protocol Manager
Electronic Patient Record
Care plan status of protocols and acts
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Guideline as watchdog function in routine
primary care
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Supporting chronic disease management adult
asthma
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Current NHS contexts

• Information for Health (1998)
• NHS Plan (1999)
• NHS 21st Century IT Programme (2002)
• Integrated Care Records System (2002)
• Protocol-Directed Care Implementation Group
• Chaired by NHS Modernisation Agency (Changing
  Workforce Programme)
• Forum for interested national players in NHS
• Aims to pool knowledge and map and track related
  work

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DMSP Mapping the pathways

• Who / what / where /when
• Key workflows
• Key information flows
• Varieties of service configuration

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Primary care
Either
Secondary care
Heart failure clinic
Referral proforma
Preliminary conclusions
LV systolic dysfunction
Unclear
Initiation of treatment with ACE and diuretics
Placed on heart failure register
Requires further investigations
Up-titration of drugs
Further treatment
Initiation of Beta blocker / spironolactone
Call/recall systems for chronic disease management
Stabilisation
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Pathways in the Diabetes Information Strategy

• A care pathway provides a view of the range of
  services that a person with diabetes is likely to
  require at different stages of their condition.
• Pathways can consist of clinical protocols and
  guidelines, written by and for professionals, as
  well as pathways of care that people with
  diabetes and their carer experience.
• A patient centred care pathway is part
  protocol/guideline, part patient-clinician
  contact and part information (about services
  delivered and the patients condition).
• All of these should be reflected in the persons
  care plan.
• Pathways will also identify opportunities for new
  ways of delivering care such as point of care
  testing in primary care.

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DMSP organizational/technical approach

• Clinical consensus on dataset and process map of
  key care pathways
• Represent datasets and pathway logic using
  industry standard clinical message format
  (HL7-V3), working with a suppliers forum (HCIF)
  http//www.e-health-media.com/news/item.cfm?ID413
  
• Provide national specification of interoperable
  pathways capability to ICRS suppliers within
  national programme.
• Primary accent on consistent information
  provision and sharing between carers and patient.
• Secondary accent on using that information to
  provide evidence-based decision support.

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DMSP Precursor project Rapid Access Chest Pain
Clinics

• CHD NSF and NeLH, 2001-2
• 5 Acute Trusts, 4 2ndary sector supplier, GP
  systems suppliers
• http//www.nelh.nhs.uk/heart/racpcs/dataset/index.
  htm

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Other strands of NHS protocols work

• National Bookings Programme Bookings systems
  and protocols
• NHS Direct Protocols for call centres and
  walk-in centres
• Protocols for emergency care and medication
  supply by non-medical professionals
• MA/NICE project on guideline implementation
• CHI review of CHD NSF

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Conclusions - Resistances

• Experience with national bookings protocols
• Guideline-based systems in general practice
• (COGENT study BMJ 2003 www.bmj.com)
• Multidisciplinary working
• Who manages the pathway?

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Conclusions - Challenges

• Care pathways Rhetoric vs reality
• Limits of single disease management?
• The Integrated in ICP
• Distances between evidence, guideline and pathway
• Central or local focus for protocol production?