Patient Centred Outcome Measures

PCOMs

A true measure of excellence? Paul Gavin – PCOMs Programme Director, NHS England Daniela Hearst – Clinical Psychologist, GOSH

Dr Nicky Harris – Paediatrician, Visiting Fellow UWE

Georgina Craig – National Director, Experience Led Care

Background • The vision is to ensure that decisions about commissioning are centred on

the outcomes that matter most to patients

• 7 Pathfinder sites commissioned in Feb 2015

– Working with children and young people

• Helping to shape NHS England strategic policy

PCOMs vs PROMs vs PREMs • Definitive policies are still forming

– Due in this financial year

• Commonalities are being explored

• Common contentions:

– Perception that PROMs do not always place the patient at the heart of goal-

setting

– PREMs are a historical feedback tool that look at processes

– Only PCOMs are in line with the 5 Year Forward View and the desire for

‘Participant Patients’

Daniela Hearst

Clinical Psychologist

Great Ormond St Hospital for Children

PCOMs in Practice

PCOMs to aid aligning medical and family

outcomes Desirable medical outcomes: Cure, symptom reduction/management Minimal pain or disability Optimal levels of adherence to treatment Minimum levels of distress around procedures Good communication between the family and the medical team Maintenance of ordinary family life

Desirable child and family outcomes: Cure, symptom reduction/management No pain, minimal disability Minimal number of visits to hospital No visible signs of illness or treatment regime Being “just like everyone else” Good relationship with medical team Normal family life, least medical intrusion

PCOMs – Practical Application

Goal based outcomes as a PCOM:

• Electronic is more fun but can be done simply and low tech

• Condition specific and also generalisable to a number of conditions

• Can be collected by clinician

• User friendly and makes sense to even young children

PCOMs – Practical Application - Findings

• It works!

• Goals may differ for clinicians and patients and carers eg less focus on

symptoms

• Similarity of goals between child and parent/carer, but priorities may be different

• Goals generate themes → clusters of themes across specialties which supports

generalisation and avoids duplication of measures

• Adaptable to a variety of settings

• Shows change simply and quickly

PCOMs – Practical Application - Lessons

• Aids relationship between therapist and patient

• Can be delivered in a variety of ways

• Demedicalises – move away from symptoms to everyday life

• Aligns professional with family more closely

• Alters power balance –gives family more say and control

• Increases participation and collaboration

PCOMs – Practical Application - Lessons

• Can be diagnostic tool too – added bonus

• Generates optimism

• Informs

• Brings the everyday into medical environment – promotes joined up care.

• Professionals like metrics- PCOMs can be used to show change

PCOMs – Practical Application - Lessons

But :

• Needs persistence, particularly at the beginning

• Can be hard to embed in clinical service delivery; looks like an extra thing to

have to do

• Effect of habit “the spirit is willing but the flesh etc ……………”

• Very helpful to have a designated person to prompt and collate data

• More challenging for one off consultations and inpatient care

Dr Nicky Harris

Palliative Care Paediatrician

Visiting Fellow UWE

PCOMs and Technology

PCOMs and Technology – Why?

Improving patient care, Safeguarding quality:

• STEEEP: – Safe

– Timely – Effective

– Efficient – Equity of Access

– Patient-centred

• Our project: developing a patient-centred outcome measure for

children with life-limiting illness

PCOMs – The Nature of the Challenge

• Quality of life:

– How to define it? How to measure it?

– For each Patient:

• Multiple co-morbidities, accumulating over time

• Long-term: deteriorating baseline, changing perception of “new normal”

• Holistic care: physical, emotional, psychological, social and spiritual dimensions

• Settings: need to follow the patient

– Home, hospital, hospice, often multiple agencies involved

– Multiple parameters: patient, parents, siblings, wider family……

– For each provider: small numbers, diverse population

PCOMs – The Nature of the Challenge

• Quality of life: – How to define it? How to measure it? – For each Patient:

• Multiple co-morbidities, accumulating over time

• Long-term: deteriorating baseline, changing perception of “new normal”

• Holistic care: physical, emotional, psychological, social and spiritual dimensions

• Settings: need to follow the patient – Home, hospital, hospice, often multiple agencies involved

– Multiple parameters: patient, parents, siblings, wider family……

– For each provider: small numbers, diverse population

Ask the patient: What matters to you?

PCOMs and Technology

A system to allow patients and their families/carers to:

identify,

describe,

prioritise,

and monitor

their own health problems, and the impact this has on their quality of life

– patient-generated outcome measures

PCOMs and Technology • Web-based, easy to use, free, secure

• Controlled by the patients/carers, not the professionals supporting them

• Interactive: personal, daily diary, longitudinal change, analyse interactions between causative factors, cumulative symptom burden

• Social-media model of communication between patients and their chosen professional support team(s).

PCOMs and Technology – Benefits for Patients • Greater understanding of patients’ needs and priorities for care

• Empowerment of patients and parents/carers

• Improved safety through sharing information, where the evidence base for an intervention is weak or non-existent

• Timely provision of support when children/families are struggling, via email alerts to professionals

• Access to expertise in any location

• Holistic support: Any or All key providers (health, social care, education) can access data

PCOMs and Technology – Benefits for Providers • Greater understanding of patients’ needs and priorities for care

• Empowerment of patients and parents/carers

• Collaborative decision-making with patients/families

• Safer interventions where the evidence base is weak or non-existent

• Timely provision of support when children/families are struggling

• More efficient use of resources

• Improve evidence base of effective interventions

PCOMs and Technology – Future Challenges • Using PCOMs is not a passive process

• Individualised patient-centred outcomes, vs collective outcome measures sought by providers

• “Team around the child”: collaborative working, integrated care, shared responsibilities for improving outcomes.

• Who/what will drive patient-centred outcome measurement forward?

Georgina Craig

National Director

Experience Led Care (ELC)

PCOMs and Commissioning

PCOMs & Commissioning – The Aim

To Explore

PCOMs & Commissioning – The Aim • How do we move from ‘personal PCOMS’ to commissioner

decisions?

• What are the benefits and challenges of embedding PCOMs

within commissioning?

• Can we have 3 from 1?

• How does aggregated PCOM data inform commissioning and

quality improvement?

PCOMs & Commissioning – Learning Relationships and people

• High level system leader buy in is critical (ideally beyond health)

• Commissioning managers and clinical lead need to buy in and

champion application of PCOMs within commissioning

• CCG engagement & patient experience teams and their

networks play a vital role in the PCOM design process

• Commissioners may need to find a range of ways to gather

PCOM data

PCOMs & Commissioning – Learning cont • People and families are really excited about the potential of

PCOMs and want to contribute (including being ‘volunteer

PCOM researchers’)

• Staff feel appreciated when they too have a PCOM

• PCOMs unite and support collaboration across providers through

a purposeful currency = shared focus; improving peoples’ lives

PCOMs & Commissioning – Learning cont PCOM process design

• Stakeholder mapping is a critical part of PCOM design

• Being clear about the contracts where your PCOM may sit is key

– as is being open to your mind about this because…

• The providers you believe are the most important may not be the

ones people and families tell you help them most

• Primary care is likely to be highly visible within PCOMs;

especially those for LTCs

PCOMs & Commissioning – Learning cont • PCOMs ‘make the invisible visible’ & are likely to drive

commissioning of ‘more than medicine’= less medical and more

wellbeing solutions (c.f. personal health budgets)

• People and families love visual PCOMs. Getting them to design

the detail of PCOM graphics builds a sense of PCOM ownership.

People take this task very seriously. It’s extremely important

• Visual PCOMs work well for those with hearing impairment

• It is easy to engage children in PCOM design

PCOMs & Commissioning – Key Messages

• PCOMs make outcomes measurement a learning and personal

improvement opportunity at all 3 levels simultaneously; build

‘learning systems’

• We have only just begun. We will only know how valuable

aggregated PCOMs data is for commissioners at the end of this

programme

PCOMs & Commissioning – Key Messages

• By their very nature, PCOMs generate qualitative feedback and

insight. That is a good thing

• We already need to be thinking about what we can stop asking

providers to do when we introduce PCOMs (we can’t ask

providers to do this ‘as well as’)

Summary • NHS England PCOM policy is forming

– Expected in April 2016

– It will be about placing the patient at the centre of the decision making

process

– The Pathfinder sites will be key in guiding decision making

• Commonalities with the NHS England PROMs programme will be

explored

• We are engaged with the wider community

Questions?

Cumulative scores

for all priorities

Untangling

Multiple

Priorities

Holistic care,

for the child

and family