PAM User Guide SCN Guide.v3 1

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The Patient
Activation Measure

A tool for facilitating supported
self-management in long term conditions
Guidance and lessons
learnt from across Wessex
1

Wessex Clinical Networks

Foreword

Contents

Page
How many times have you attended meetings looking to redesign
patient pathways to meet the challenges posed by an aging population
with increasing frailty? And how often have you heard reference to
implementing self-management, patient centred care, expert patient
programmes, patient empowerment...? Yet has your individual patient
contact or commissioned service fundamentally changed to incorporate
these ideals?
If, like me, your answer to this is ‘no’ or ‘only partially’, then maybe the
Patient Activation Measure (or similar tools) can offer you something.
Whilst 13 simple questions cannot cure all of the challenges faced by
people with long term conditions, they can help guide and reframe the
nature of our conversations as commissioners, clinicians, managers and
patients within the NHS. Taking the time to understand how capable and
ready people are to manage their complex health needs on a societal
level, can help ensure our limited resources are commissioned in the
most effective manner. It can also enable individual clinicians to offer
treatments which are most appropriate and personal for each person.

Dr Hayden Kirk
Consultant Physiotherapist
and Clinical Director – Adult
Services, Solent NHS Trust

Following the progress of the pioneering teams in this project has
re-enforced the reality that behavioural change must first start with
me as a clinician if I am to help the people I see in clinic to effectively
self-manage their complex needs. So I hope that if like me, you aspire
to improve your practice, management or commissioning of services
you will find the information and lessons learnt within this booklet a
useful stepping stone to delivering more meaningful, individualised and
effective care.

Supported Self-Management___________________________________________4
What is Patient Activation and why is it important?________________________4
What is the Patient Activation Measure (PAM)?___________________________5
Why use the PAM?_____________________________________________________5
A Practical Guide to using the PAM…____________________________________6
Tailoring for Patient Activation Level____________________________________8
Examples of the PAM being used in Wessex_____________________________10
How might Patient Activation influence my practise,
as a clinician?________________________________________________________12
How can I understand my own beliefs around
Patient Activation?____________________________________________________12
How ready were the Wessex clinicians in supporting
Patient Activation?____________________________________________________12
As clinicians, what are our next steps towards patient
led care, self -management and Patient Activation?______________________12
SCOT Analysis_______________________________________________________13
Notes_______________________________________________________________14
Contact_____________________________________________________________15
Further reading______________________________________________________15

Wessex Clinical Networks

Supported Self-Management

What is the Patient Activation Measure (PAM)?

The NHS spends 70% of its budget supporting people living with long term
conditions (LTCs) – a staggering statistic – and yet many people don’t feel that
they have the knowledge, skills and confidence to manage their own health
and wellbeing successfully.

The PAM provides a simple, evidence-based mechanism for establishing the
capacity of individuals to manage their health – and then using that information
to optimise the delivery of care2.

Supporting people to take an active role in managing their health is a core part
of current health agendas. But how do we really know if people are engaged
with understanding and managing their health? And how can we best support
the 1.5 million people with LTCs to live more independently?

What is Patient Activation and why is it important?
Patient activation describes the knowledge, skills and confidence a person has
in managing their own health and healthcare. It is a good predictor of health
outcomes, and can be raised through targeted interventions.
The concept of patient activation is linked to the principle of person-centred
care. It enables the delivery of personalised care that supports people to
recognise and develop their own strengths and abilities. Supporting people
to develop capability to manage their own health and care by giving them
information they can understand and act on, and providing them with support
that is tailored to their needs, underpins the concept of patient activation1.

four
levels of
activation

It is a validated, 13 point questionnaire with multiple choice answers. It measures
how activated an individual is. This enables generation of an activation level for
that individual, at that point in time. The four levels of activation are:

70%

Level 1

Level 2

Level 3

Level 4

Individuals
tend to be
passive and feel
overwhelmed
by managing
their own health.
They may not
understand their
role in the care
process.

Individuals may
lack knowledge
and confidence
in managing
their health.

Individuals
appear to be
taking action but
may still lack the
confidence and
skill to support
their behaviours.

Individuals have
adopted many of
the behaviours
needed to
support their
Health, but may
not be able to
maintain them
in the face of life
stressors.

Adapted from Hibbard and Gilburt (2014) Supporting people to manage
their health. An introduction to patient activation. The Kings Fund.

Knowing someone’s activation level provides an insight that can help health
and social care professionals to:
l identify interventions and options that are appropriate and realistic for each
individual (tailoring)
l measure the impact of these interventions over time (outcome measurement)
Mapping activation levels across populations can help commissioners and
service providers to:
l specifically put services in place that meet their population needs –
targeting and allocating resources that are proportional and most effectively
facilitate self-care for each patient group.

Why use the PAM?
l It is a quick (3-5 minutes) and
easy to use evidence based
intervention. Changes in levels
of patient activation are positively
correlated to health behaviours,
clinical outcomes, patient
experience and reduced health
care costs2

1 NHS England https://www.england.nhs.uk/ourwork/patient-participation/self-care/patient-activation/pa-faqs/ Accessed March 2017
2 Hibbard and Gilburt (2014) Supporting people to manage their health. An introduction to patient activation. The Kings Fund.

Wessex Clinical Networks

A Practical Guide
to using the PAM…
Due to licencing restrictions, we cannot reprint
the PAM within this document. However, you
can find copies of the PAM in the Kings Fund
document – Supporting People to Manage
their Health [details can be found at the end
of this guide].
Based on the experiences of the pilot
teams in Wessex, we recommend….

Wessex Clinical Networks

Step 1: Prepare!
l The PAM is about more than filling in a form and
generating a score. A number is just a number without
the intelligent thought and interpretation that goes
with it! But, used well, it is a potential enabler to better
conversations, different ways of thinking, and more
individualised support for people with LTCs.

l The PAM can be delivered in different ways –
local services have tried administering via email,
over the telephone, as a paper survey completed
independently by the patient, or as part of a face to
face conversation with a healthcare professional.

• What do you [the team] understand by the term
supported self-management?

l We have found the PAM to be most useful when
used as part of a face to face discussion. This
enables the PAM to shape a conversation between
the patient and healthcare professional, giving
richer insights and allowing potential actions to
naturally develop.

• What do you [the service] already do to support selfmanagement with your service users?

l Before using the PAM, you should inform the
person that:

You need to get your team on board. Learn about patient
activation to create a shared understanding, and reflect
with your team. Four key questions to think about:

• How do you [clinicians] know if this is effective?

• There are no right or wrong answers

• Could the PAM be used within your service, and how
will you know if it has been worthwhile?

• The PAM will help you (the clinician) to
personalise the support you offer that person

l The PAM is a commercially licensed tool – contact
Insignia Health for further details - www.insigniahealth.
com/products/product-licensing. You will need access to
PAM licences before proceeding.
l PAM scores are generated through a Microsoft Excel
document which requires internet access – check with
your IT department to ensure access will be possible
(firewalls may need removing).
l As part of the licensing agreement, services using the
PAM are expected to contribute to a national database.
Information submitted to this database is not identifiable;
however, you should ensure that this conforms to your
organisation’s Information Governance requirements.
l Plan and agree how you will use the PAM – who,
how, when?

Step 2: Delivery

Stage 3: Action
l Self-management interventions can be
tailored, based on an individual’s PAM
level.
l Use the score, level, and the individual
answers to talk to the person about their
priorities. Support should then be offered
in a way that is appropriate to that person’s
current level of activation.

• It will take just 3-5 minutes to complete
• Responses will be held in confidence
• Scores from PAM will contribute to a
national database, but this remains entirely
unidentifiable.
l Use the PAM calculator to generate a PAM score
and level. Remember, this is a score for that
individual, at that point in time.
l Document the score in your clinical records.
More detailed information about PAM administration
can be found in the PAM Practice Manual, which is
supplied as part of the licence agreement (Insignia
Health, 2016)

Wessex Clinical Networks

Tailoring for Patient Activation Level
Level 1: Foundation

Level 2: Developmental

Support the person to:

l Develop basic knowledge, self-awareness and
confidence

l Increase knowledge and skills

l Self-monitor their current behaviour and how this
makes them feel
l Jointly agree small, short term (for today) action
steps
l Understand their role in their own health –
building understanding that their role is vital; it is
not the responsibility of others.

l Start making small but meaningful changes – one
step at a time
l Ensure the person has all of the tools necessary
to achieve this change
l Connect their health and choices to immediate
problems, not long term goals.

l Think about the here and now – how does what
you do today make you feel today?

l Start to identify any causes of stress, and build
problem solving skills for managing stress and
condition symptoms.

Level 3: Affective

Level 4: Optimal

Support the person to:

l Initiate new behaviours

l Maintain behaviours and techniques

l Increase their knowledge and skills in relation to
their condition(s)

l Not only to set goals and actions, but to identify
potential barriers (and how to overcome them).

l Set bigger, medium term goals

l Develop problem solving skills – what to do in
certain circumstances.

l Connect choices to long-term outcomes –
understanding that positive changes have long
term benefits

l Sustain healthy behaviours in times of stress or
challenge.

l Problem solve – when a new goal hasn’t been
achieved, reflect on this together
l Start to establish routines for key behaviours.

Adapted from Hibbard and Gilburt (2014) Supporting people to manage
their health. An introduction to Patient Activation. The Kings Fund.
8

SUPPORTED
SELF-MANAGEMENT
could you be doing it better?
9

Wessex Clinical Networks

Examples of the PAM
being used in Wessex

Farnham

PAM has been used by 5 very different teams across Wessex

Specialist Community Diabetes Team,
West Hampshire:
This service offers specialist support for people
living with diabetes throughout the pathway of care,
whenever they need it. The PAM was trialed with
patients with Type 1 diabetes, on the telephone, in the
nurse lead clinic, and before the education sessions.
What they have found:
• The tool was difficult to use as part of a telephone
consultation
• The tool was easy to use face to face; receptionists
gave out the questionnaire in the waiting room,
and clinicians were able to follow up in clinic.
• The PAM seemed to be a good reflection of
where patients felt they were in their own self
management

Basingstoke

iCOPD, Southampton:
This service offers an integrated approach to
supporting people with COPD in community
settings, as well as the acute hospital. The team
is multi-professional.
The PAM was used in two clinics at Bitterne
Health Centre and Royal South Hants Hospital.
What they have found:
• The PAM may be helpful in determining
which self management tools are useful at
any particular time.
• The PAM was completed with ease by
patients while waiting to go into each clinic.
It prompted some specific conversations
around health management during the clinic.
• evidence to ascertain the correct level to
target self – management interventions and
to assess the interventions we already have
in place.

Sexual Health Services, Wessex:
Alton

This is a specialist team, commissioned by NHS England
to support people living with HIV across the whole of
Hampshire. The PAM was introduced as part of a CQUIN
in June 2016. The team underwent NHS England training
with Insignia. Over 300 licenses have been used to date.
What they have found:
• The tool was straightforward to use.
• The team plan to review what good interventions
look
Winchester
like for each activation level in their 3 locality areas.
• They have plans to audit the PAM score against
behaviour of those clients to triangulate the activation
levels.
Eastleigh

Bordon

Petersfield

Southampton
Parkinson’s Disease Nurse Service,

Community Occupational Therapy Housing
& Adaptation Service, Isle of Wight:

Dorchester

This service enables people to maintain, improve, or
restore their occupational performance. This is achieved by
supporting people to improve their own health and wellbeing
by assessment of need, and possible use of interventions
Poole
such as design and construction methods, assistive
technology and activity modifications. The service also
provides advice, guidance and signposting to people who are
experiencing difficulties with activity participation.
The Service piloted the PAM in their new screening clinics.
What they have found:
• The Clinician Supported – PAM (CS-PAM) demonstrated
the varied beliefs and attitudes of the clinical team toward
patient activation. This led to some reflection regarding
the team’s confidence, attitude and skill, with regard to
supporting people to take an active role in their health.
The CS-PAM is a useful tool, which can help clinicians to
consider their role in patient activation.
• A local written information and consent form given with
the PAM, provided the patient further information and
met local information governance needs.

Fareham
South East Hampshire:
Portsmouth
This is a community based service which provides
Gosport
specialist assessment, support and monitoring to

Ringwood

Lymington
Bournemouth
Newport

people with Parkinson’s Disease and their families.
The service delivers nurse-led clinics, supports
Consultant-led clinics, and provides home based
intervention. People with Parkinson’s Disease are
reviewed at regular intervals, but can also request a
review at any point.
The Parkinson’s Nurse Service piloted the PAM in
one of their weekly clinics, and during home visits.
What they have found:
• One-size doesn’t fit all – it was not a useful tool
for people at the more advanced disease stage.
• The PAM is potentially most useful if used
right at the beginning, when patients are newly
diagnosed; ensuring that interactions, information
and interventions are tailored right from the start.
• Administrating the PAM face-to-face provided a
useful structure for discussing self-management
challenges and approaches.

Wessex Clinical Networks

How might Patient Activation influence my practise,
as a clinician?
Patient Activation focuses on giving patients the skills, knowledge and confidence to be active in
their own health care. Clinicians must work in partnership with patients to support and develop
this active role. If patients are to have ownership and a sense of control over their health, then
clinicians must take a more long-term, individual approach, which helps patients to gain this
ownership. This may represent a significant shift in the perceived role of many clinicians3

Wessex Clinical Networks

SCOT Analysis
You can use this table to think about how you currently support people to be more independent in managing their health.
Strengths

Challenges

Opportunities

Threats

How can I understand my own beliefs around Patient
Activation?
The Clinician Support for Patient Activation Measure (CS-PAM) is a tool which assesses how the
clinician views the patients’ role in the care process3 – it assesses how ‘ready’ clinicians are to
support Patient Activation.

How ready were the Wessex clinicians in
supporting Patient Activation?
Across Wessex, the clinicians we surveyed were evenly spread along a spectrum
from low to high, in the views they expressed around the patient’s role in
care. In other words, whilst many clinicians were supportive of people taking
an active role in their own health and care, an equal number were less so.
Whilst this is just a snapshot from Wessex, the findings are not dissimilar
from a large national survey using the CS-PAM4

As clinicians, what are our next steps
towards patient led care, self -management
and Patient Activation?
If we are to truly shift towards a more patient led approach, promoting
and supporting individuals to have control of their health, then we must
first start with understanding, and if necessary changing, the mindset and attitude of clinicians. We encourage you to reflect with your
colleagues – what are your attitudes and practices toward supporting
people to take a more active role in their health; and do you have the
confidence and skills to do this effectively? The CS-PAM is a useful tool
to support this reflective process. Can you be an inspiring facilitator of
supported self-management?

3 Hibbard, Collins, Mahoney, Baker (2010) The development and testing of a measure assessing clinician beliefs about patient self-management. Health Expectations, 13,65-72
4 NHS England (2015) How much do clinicians support patient activation? Person Centred Care Team, NHS-E, London.

Wessex Clinical Networks

Notes

Contact details

Further reading:

.....................................................................................................................................................................................

If you are considering using the
PAM and would like to discuss
with a similar team that has
trialled it, the following people
would be happy to be contacted:

The PAM is licenced by Insignia Health. More information
can be found on their website www.insigniahealth.com/
products/pam-survey

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iCOPD - Solent
Lead: Lindsay Welch
Email: Lindsay.welch@solent.nhs.uk
West Hampshire Community
Diabetes Service, Fenwick
Hospital Lyndhurst
Lead: Liz Houghton
Email: liz.houghton
@southernhealth.nhs.uk
Parkinson’s Nurse Service: South
East Hampshire
Lead: Chris Gorman
Email: Christine.gorman
@southernhealth.nhs.uk

My Health My Way, Dorchester
Lead: Anya De Longh and Naomi Unwin
Email: Anya.deIongh
@helpandcare.org.uk
naomi.unwin
@helpandcare.org.uk

Solent Sexual Health Services
Lead: Debbie Zimmerman
Email: Deborah.Zimmerman
@solent.nhs.uk

Community Housing &
Adaptations Occupational
Therapy Service - Isle of Wight
Lead: Lisa Paul
Email: lisa.paul@iow.nhs.uk

www.kingsfund.org.uk/publications/supporting-peoplemanage-their-health
NHS England – Patient Activation FAQ’s www.england.
nhs.uk/ourwork/patient-participation/self-care/patientactivation/pa-faqs/
www.health.org.uk/publication/person-centred-care-ideasaction
Further copies of this user guide will be available at the
Wessex Clinical Network site:
www.wessexscn.nhs.uk/network-structures/cardiovascular/
rehabilitation-reablement-and-recovery/
Wessex F-PAM Project Team:
Carl Adams, Project Lead/ Trainee Consultant Practitioner, Health Education
Wessex – carl.adams@nhs.net
Esther Clift, Project Lead/ Trainee Consultant Practitioner, Health Education
Wessex – esther.clift@nhs.net
Andreea Butnaru Research Administrator - Andreea.Butnaru@solent.nhs.uk
Dr Louise Johnson, F-PAM Executive Project Lead, on behalf of Wessex
Strategic Clinical Network – louise.johnson@rbch.nhs.uk
Wessex Strategic Clinic Network - PAM Rehabilitation, Recovery and
Reablement Steering Group
Dr Hayden Kirk (Chair) Clinical Director Adult Services Solent NHS Trust
Dr Jane Williams Deputy Director – TransformationIntegrated Service
Division Southern Health Foundation Trust
Alex Whitfield Chief Executive Officer, Hampshire Hospitals Foundation Trust
Dr Philippa Beckwith Clinical Psychologist in Neuropsychology, Solent NHS Trust
Nichola Arathoon Principal Programme Lead Integrated Community Services
NHS Dorset Clinical Commissioning Group
Janice Gabriel Cardiovascular, Wessex Clinical Network Manager
Sam Agnew, Area Manager, Stroke Association
Esme Mutter, Regional Director, Stroke Association
The project group would like to thank Dr Jane Williams and Southern Health FT
for support with licences and set up arrangements for the project trial period.
15

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could youSUPPORTED
be doing it better?
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© March 2017. Wessex Clinical Networks.
Designed by NHS Creative – CS44935

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