Compassionate Data Using Data to deliver Compassionate End of Life Care Columbus Ohaeri,...

Compassionate Data

Using Data to deliver

Compassionate End of Life Care

Columbus Ohaeri, Intelligence Analyst [email protected]

National End of Life Care Intelligence Network, Public Health England

TodayAim:

To consider how a new national data collection from specialist palliative care services can improve the evidence base for compassionate palliative and end of life care

Objectives:

To inform about

• the role of National End of Life Care Intelligence Network (NEoLCIN)

• current data sources and limitations, and what we can say from them

• how do we measure quality?

• the value of national data that includes outcome data

• plans and progress towards a new national data collection

2 Hospice23 Annual National Conference 17102015

National End of Life Care Intelligence Network

Established 2010 to improve the collection and analysis of information related to the quality, volume and costs of palliative and end of life care.

NEoLCIN became part of Public Health England 2013.


Turning data into information & information into insight


Monitoring

EOLC Profiles

for each local

authority

Website

Building the evidence base

Resources to support improvement

national information standard:

SCCI 1580 Palliative Care Co-ordination

Guidance and expertise

Compendium

Themed

reports

EoLC profiles

National Data - palliative end of life careIncludes:

• Office for National Statistics (ONS) Mortality statistics

• % Deaths on usual place of residence

• % Deaths in hospital, care home, hospice, home

• Linked HES-ONS data

• VOICES – national survey of the bereaved

• End of life care audit: dying in hospital

• MDS from specialist palliative care


What do these data sources tell us?


How many people die in England?(trend)

What do we know about those who died?

Age (and aging population)


Changes in health in England Findings of the Global Burden of Disease Study 1990 - 2013

Hospice23 Annual National Conference 17102015

• Big falls in premature mortality but not morbidity

• Life expectancy increased by 5.4 years (75.9 – 81.3)

• Top causes of early deaths – heart disease, stroke, lung

cancer & COPD

• People are living longer but with co-morbidities, disability,

or illnessReference: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)00195-6.pdf

Cause of death (trend)


Place of death (trend)


Place and cause of death


Place of death for people in hospital during their final 7 days

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Source PHE / Hospital Episode Statistics (in-patients England)


Place of death for people discharged from hospital during their final 7 days

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Source PHE / Hospital Episode Statistics (in-patients)

England


What, if anything, does this say about quality of care?


National Survey of Bereaved People (VOICES), 2014


VOICES Survey 2014 – Overall Quality of Care


VOICES Survey 2014 – Right PoD?


VOICES Survey 2014 – Pain Relief


Which of the following would be most important to you regarding how you spend your final days?

21 Sue Ryder – A Time and a Place Survey 2014 Hospice23 Annual National Conference 17102015


Preferred and actual place of death – a comparison of quantitative and qualitative data

How well do we die?• Nearly ………500,000 deaths each year and increasing

• Perhaps …….50% people dying need specialist palliative care.

• Perhaps ……33% of people dying currently receive it

• We don’t know the quality of services, how they integrate and outcomes of care


Difficult to know

Gaps in our understanding of end of life care provisionLack of evidence on what is ‘good’ end of life care.

Developing the evidence base for compassionate end of life care

A new national data collection

National End of Life Care Intelligence Network (NEOLCIN)


Funding palliative care: data requirements

Background

Palliative Care Funding Review - report published July 2011

Palliative Care Funding Pilot 2013-14 - development currency published October 2014

Development currency testing 2015/2016 working towards full implementation 2017

Aim: To develop a palliative care currency using criteria which best predict patient needs and drive costs that will support commissioners and providers to have an evidence-based discussion about the funding requirements.

Data requirement for currency – Funding mechanism requires patient-level data


Age Number of diagnoses

Phase of illness stable, unstable, deteriorating, dying

Functional status

Government recognitionNHS Constitution- update 2013

NHS Mandate- improving standards of care- especially for older people and at the end of people’s lives

NHS England -actions for end of life care 2014-16

Putting patients first

NHS Outcomes Framework

Prime Minister’s Challenge on Dementia

Vulnerable older people’s plan

National Choice offer for people to die at home

QOF


The vision......better data from specialist palliative care to:

• support care delivery- adding value for those collecting data

• inform commissioning and funding

• support service improvement- improving quality and cost-effectiveness

• provide richer picture of end of life care

• reduce inequalities

• support integration and innovation

• measuring quality of care

• build the evidence base

Improving care for people and their families27 Hospice23 Annual National Conference 17102015

What is quality?

Structurestaff, budgets, buildings,

beds, equipment…

Processstrategies, plans, referral systems, clinics held…

Outputproducts- numbers of people

treated, waiting times, number of deaths…

Outcomeschanges in health status or quality of life attributable to

the intervention


Donabedian framework

What do we want the data to tell us?

Are we meeting demand?

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Is care making a difference?

Which model of care is most effective?

Does this vary by age, gender, disease group etc?

What do we need to do differently? Are we providing value for money?

Does this intervention work?

What is the evidence base?

Is there equity?

Is more investment needed?

How does this approach compare to others?

What are the patterns of care across services?


The opportunity

Single, individual-level data collection from specialist palliative care to capture demographics, activity, outcomes and support a funding system

Provides data with which we can:

Quantify people referred to/ receive specialist palliative care.

Support integration of care between different providers

Measure the effectiveness of palliative care.

Compare different types of care

Support local commissioning & service improvement

better understand variation and reduce inequalities up quality

Benchmark and drive up quality and cost-effectiveness

Improving care for people and their families30 Hospice23 Annual National Conference 17102015

Led by Public Health England and NHS England

Extensive knowledge of end of life care and the sector

Experience and expertise in establishing a similar data collection systems

Partners

All relevant statutory bodies.

Expert Reference Group

Technical Reference Group

Widespread enthusiasm

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Who is involved


Principles

• Build on existing data collection

• Start small

• Link to other data-sets.

• Use validated outcome measures

• Supported by national information standard

• Meaningful comparisons - case mix factor


Outcome measure: the requirement

Valid - measure what they should

Reliable - can be systematically depended on in a team and over time

Sensitive to change - pick up important change

Clinically applicable

Brief and not too burdensome - patients, families, staff


Outcomes: being pilotedProblem severity 5 questions from the integrated Palliative Care Outcome Scale (IPOS):

- pain, breathlessness, anxiety/distress, information needs, ‘at peace’

Views on Care based on work by St Christopher's Hospice Group

Picker/VOICES question on carer support

Functional statusAustralian modified Karnofsky Performance Scale

Phase of illnessPalliative Care Phases developed by the Australian Palliative Care Outcomes Collaboration

- stable, unstable, deteriorating, dying


Draft data set - being tested

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NHS Number

Initial of Client’s First Name

Initial of Client’s Surname

Person Birth Date

Person gender

Ethnicity

Assessment ID

Spell ID

Assessment datePhase of Illness (stable/unstable/deteriorating/dying)Functional status- Karnofsky

Pain

Breathlessness

At peace

Anxiety/Distress

Information needs

Views on Care

Assessor

Carer assessment of support

Carer views on care

Patient Spell Assessment

Referral dateReason for referralReason for referral 2Reason for referral 3GP practice codeCare setting: inpatient/outpatient/communityReady for service dateSpell start dateAgency codeClient referenceClient IDSpell IDConsentLocation at spell startLives alone?Preference for place of deathPersonalised Care Plan offeredPrimary end of life diagnosisDiagnosis 2Diagnosis 3PostcodeDisabilityCasemixSpell end dateSpell outcome: discharged/diedDischarge destinationPlace of death


How can data be used?Individual level

To inform the care of an individual

Service level

Audit and quality assurance

Planning and service improvement

Population level

Commissioning

Research

National and international level

National summary reports- public, planners, policy

Comparison of key indicators


What have we done so far?Stakeholder engagement and partnerships

Promotion and consultation (Expert groups, national events, online consultation, Patient and public consultation)

Draft data set now being tested through pilots

Developing a national information standard

Working with IT systems providers

Testing underway with 11 pilot sites

Training resources available


Pilot sitesAddenbrooke’s Hospital Cambridge

East Dorset Palliative Care Service: Forest Holme Hospice and Macmillan Unit

Greenwich & Bexley Community Hospice

Kings College Hospital NHS Foundation Trust

Marie Curie Hospices

Mid Yorkshire Hospitals NHS Trust

Newcastle upon Tyne Hospitals NHS Foundation Trust

North London Hospice

Rennie Grove Hospice Care

St Luke Hospice, Plymouth

St Luke’s Hospice, Sheffield


Next steps

• Pilots run until March 2016

- data collection & submission

- evaluation

- revisions to data set

• Develop & test a web-based data entry tool

• Communications strategy

• Develop information governance and legal framework

• National information standard publication

• Continue to work in partnership with NHS England

• Support sector to prepare

• Aiming for national rollout April 2017


So, how can we use data to deliver compassionate end of life care?


A theory of compassion as an attunement or discordance to patient need (Chellel et al. 2014)


How will it improve the evidence?


Equalities

age gendersocio-economic ethnicitydiagnosis disabilitiesgeography

Understanding need

referral patternscomorbiditieswaiting timespatterns of care

Commissioning

information about complexity and quality improvement over time

measurement of effectiveness

comparative data

Service improvement

compare outcomes for different interventions

compare outcomes with other services

Identifies service integration

Further information

Project lead: [email protected]

Programme manager: [email protected]

NEOLCIN: [email protected]

Websites:

http://www.gov.uk/phe; http://www.endoflifecare-intelligence.org.uk


mailto:[email protected]



http://www.gov.uk/phe

http://www.endoflifecare-intelligence.org.uk/

http://www.endoflifecare-intelligence.org.uk/

And that’s where I’ll stop

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