Patient activation and PAM FAQs

Patient activation FAQs

Patient Activation Measure (PAM) FAQs

Supported Self-management programme

What is patient activation?

Patient activation describes the knowledge, skills and confidence a person has in managing their own health and care.

The concept of patient activation links to all the principles of person-centred care, and enables the delivery of personalised care that supports people to recognise and develop their own strengths and abilities. It underpins an asset-based approach that supports people to develop their 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.

While patient activation is closely linked to other concepts such as ‘self-efficacy’ and ‘readiness to change’, it is a broader and more general concept, reflecting attitudes and approaches to self-management and engagement with health and healthcare, rather than being tied to specific behaviours.

You can find out more about patient activation in The King’s Fund ‘Supporting people to manage their health’ report.

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Why is patient activation important in the context of the NHS?

In England, more than 15 million people have a long-term condition (LTC). This group tend to be heavy users of the health service, accounting for at least 70 percent of all NHS spend but are likely to spend less than 1 percent of their time in contact with health professionals. The rest of the time is spent with their carers, their families or managing on their own as ‘experts by experience’. People with long-term conditions manage their health on a daily basis, but may need additional help to develop their confidence in fulfilling their role as a self-manager.

A growing body of evidence emphasises the importance of effective self-management of long-term conditions (LTCs). People who recognise that they have a key role in self-managing their condition (and have the skills and confidence to do so) experience better health outcomes. Yet the ability of people to successfully self-care and stay well at home can vary considerably from person to person. People with LTCs and their carers need to be better supported to manage their own condition(s).

In recognition of this supported self-management is included as part of the NHS Long-Term Plan’s commitment to make personalised care business as usual. Universal Personalised Care sets out how a comprehensive model of personalised care will be put into practice. Supported self-management and patient activation is one of the key components of the model; especially, for people with long term conditions.

By understanding a person’s level of knowledge, skills and confidence (or activation level), NHS services can support them in the most appropriate way to manage their LTC.

Evidence shows that this can lead to better outcomes, a better experience of care, healthier behaviours, and fewer episodes of emergency care that leads to lower costs for the NHS. A study found that less activated patients had 8 percent higher costs in the base year and 21 percent higher costs in the following year than more activated patients. Evidence has also shown that when patients are fully informed about their options and outcomes, they choose fewer treatments, reducing the gap between what they want and what doctors think they want.

This has the potential to reduce the pressure on NHS services, improve quality and ensure that resources are focussed on those patients with the most complex health needs.

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Why are we using the term ‘patient activation’?

People rightly reject being labelled as patients. The idea of activation can imply an underlying passivity. The concept of patient activation has gained credence among clinicians, academics and think-tanks, so at this point in our journey, it is a useful phrase to use. However, at NHS England, we recognise that the term may be problematic and is not universally liked.

We would like to emphasise that understanding activation is about focusing on the knowledge, skills and confidence that individuals have to manage their health. We welcome alternative suggestions to the term ‘patient activation’.

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How can measuring patient activation benefit people?

Evidence shows that people at higher levels of activation tend to experience better health, have better health outcomes and fewer episodes of emergency care, and engage in healthier behaviours (such as those correlated to smoking and obesity). On the other hand, patients with lower activation have low confidence in their ability to have an impact on their health and often feel overwhelmed with the task of managing their health and wellbeing.

It is estimated that between 25 and 40 percent of the population have low levels of activation (levels 1 and 2). These people are unlikely to respond to opportunities to improve their health through self-management. They may not understand their role in their care. Often they have experienced failure in trying to manage and have consequently become passive with regard to their health and wellbeing. As a result, they engage less with preventative healthcare and are involved in more costly emergency care episodes.

Measuring patient activation can drive real improvements as:

  • Understanding activation levels help patients and clinicians to determine the realistic “next steps” for individuals to take in term of self-management;
  • It allows for training and education resources to be tailored to the levels of activation of different individuals within the population;
  • It can support more appropriate allocation of resources towards people at lower levels of activation and who are less confident about their ability to manage their own care.
  • It can enable equality and health inequalities to be tackled more effectively by targeting interventions at disadvantaged groups to increase their health literacy and patient activation.

There is evidence to show that patient activation is changeable and effective interventions can help to increase people’s activation levels and their confidence in managing their health. A number of programmes have demonstrated the ability to raise a person’s activation level – typically by focussing on gaining new skills, encouraging a sense of ownership of their health, supporting changes in their social environment, health coaching and educational classes. All of these help to empower people to take greater control of their health, leading to better outcomes and improved experience of the health service.

Evidence has also shown that when patients are fully informed about their options and outcomes, the gap between what they want and what doctors think they want is reduced, decreasing the risks of silent misdiagnosis.

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How can measuring patient activation help clinicians?

Measuring patient activation gives healthcare professionals a starting point to meet the patients ‘where they are’, helping them to tailor their approaches to individuals appropriately and assess a person’s ability to take on self-management health tasks. It can help to shape the agenda for the consultation, including exploring patient expectations and motivations and options for supporting the patient to increase their levels of knowledge, skills and confidence.

Understanding a person’s level of activation can help clinicians to identify interventions and options that are appropriate and realistic for individuals. It can also help identify where a carer’s help may be valuable, for example in supporting a person to understand and take their medicines. It can help clinicians to monitor a person’s progress, such as where a care plan has been agreed. Measuring a patient’s activation at different stages in the plan provides objective feedback to both clinician and patient on goals relating to self-management.

All of these support clinicians to develop a more person-centred approach in their interactions with patients.

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How can measuring patient activation help commissioners?

Understanding people’s activation levels can help commissioners to put interventions in place to meet their population’s needs more appropriately, such as commissioning training and education resources tailored to the levels of activation of different individuals within the population. It can enable targeting and allocation of resources more appropriately to provide more in-depth support to those who have lower levels of knowledge, skills and confidence in their ability to manage their own care.

Measuring patient activation can help commissioners in measuring the effectiveness of services and in quality improvement through assessing whether an intervention, tailored to the person’s level of activation, made a difference to their level of knowledge, skills and confidence. This can help to support commissioning activity to make any required changes to the types of services to ensure it meets the needs of their local population.

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Can people be supported to increase their activation? If so, what are the types of interventions that can help to increase it?

Studies show that targeted interventions can increase an individual’s activation score and their capacity to self-manage their condition more effectively. People with lower levels of activation are likely to need more in-depth one to one support as compared to people with higher levels of activation. When appropriately supported, evidence shows that people with lowest levels of activation make the most gains.

A range of interventions tailored to individuals’ needs are required to support people to increase their knowledge, skills and confidence. You may already have some of these services/interventions, such as social prescribing, volunteer health roles and time banking in place in your local area.

NHS England’s Realising the Value programme has also identified five evidence-based approaches that engage people in their own health and care. The five areas of practice are self-management education; peer support; health coaching; group activities that promote health and well-being; and asset-based approaches in a health and well-being context.

The programme recognises that person-centred and community-based support needs to be both holistic and tailored around the individual, and there are connections between these approaches and other key enablers such as care and support planning and social prescribing. Interventions linked to these approaches can help to increase people’s activation.

It is also important to note that efforts to increase levels of patient activation will be more successful when supported by a whole system approach including training of clinicians in these new ways of working.

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Can a person’s activation level go up and down over time?

A person’s level of activation is a dynamic concept, and not a label. The individual may have high levels of knowledge, skills and confidence, and so be highly activated. However, if they then receive a new diagnosis or experience a new complication, their level of knowledge, skills and confidence may decrease, until they have developed the knowledge, skills and confidence to manage it well.

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How can clinicians support patients to increase their activation more effectively?

Improved communication skills for clinicians and training in areas such as motivational interviewing and health coaching, can support them to address the individual needs of patients at different levels of activation more effectively.

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Can supporting people to increase their activation have an impact on reducing costs for the NHS?

Evidence shows that increasing people’s activation can help with cost reductions as less activated patients engage less with preventative healthcare and are involved in more costly emergency care episodes. Studies show that targeted interventions can increase people’s activation scores and their capacity to self-manage their condition more effectively; and when appropriately supported, patients with lowest levels of activation make the most gains. Supporting these patients will help to improve their outcomes, their experience with the health service and also reduce their rates of hospitalisation and visits to accident and emergency departments. This will result in reducing the healthcare costs of these patients in the NHS. A study found that less activated patients had 8 percent higher costs in the base year and 21 percent higher costs in the following year than more activated patients.

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What is the ‘Patient Activation Measure’ (PAM)?

Individuals have different levels of knowledge, skills and confidence to assume responsibility for their own health and well-being. In order to tailor support according to their needs and to increase their capability to look after themselves more effectively, it is important to be able to measure a person’s level of activation.

The Patient Activation Measure (PAM) is a validated, commercially licenced tool and has been extensively tested with reviewed findings from a large number of studies. It helps to measure the spectrum of skills, knowledge and confidence in patients and captures the extent to which people feel engaged and confident in taking care of their condition.

Individuals are asked to complete a short survey and based on their responses, they receive a PAM score (between 0 and 100). The resulting score places the individual at one of four levels of activation, each of which reveals insight into a range of health-related characteristics, including behaviours and outcomes. The four levels of activation are:

  • Level 1: Individuals tend to be passive and feel overwhelmed by managing their own health. They may not understand their role in the care process.
  • Level 2: Individuals may lack the knowledge and confidence to manage their health.
  • Level 3: Individuals appear to be taking action but may still lack the confidence and skill to support their behaviours.
  • Level 4: 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.

The PAM tool is licensed by the US company, Insignia Health LLC.

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How can PAM be used in practice?

The PAM can be used as:

  1. Tailoring tool – Measuring patient activation gives healthcare professionals a starting point to meet the people ‘where they are’, helping them to tailor their approaches to the individuals more appropriately to support them on their ‘journey of activation’. Using the PAM in this way as a tailoring tool encourages the provision of proactive system support for people with long-term conditions to develop the skills, knowledge and confidence to manage health and keep well at home. For example, one GP practice in Sheffield has redesigned their diabetes review process through offering longer appointments using the PAM to tailor discussion according the individual’s level of activation.
  2. Tailoring tool and outcome measure – As a quantifiable measure, PAM can be used at scale and to assess whether the services/interventions are providing effective and tailored support to people’s needs. Aggregate/cohort PAM scores can be used to evaluate commissioned programmes to understand if they increased people’s activation, or if any changes are required to the types of services required in the local area according to people’s needs. It can be used to compare outcomes from different programmes.

For example, NHS Horsham and Mid Sussex CCG and NHS Crawley CCG have commissioned a tailored health coaching service in their area where health coaches use the PAM to tailor their approach to working with patients. PAM is also being used here as an outcome measure as the patients complete a baseline PAM on entry to the service and complete it again at the end of their coaching.

You can use the PAM in one or more ways listed above as per your objectives. Case studies from the PAM Learning Set and the findings from the independent evaluation will also be useful in this context.

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Is the PAM survey available in other languages?

Yes, it is available in other languages such as Urdu, Gujarati, Hindi, Bengali, Punjabi, Polish, Slovak, Somali, Czech and Romanian to meet the needs of your population.

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Why is the NHS supporting the use of PAM above other measures?

To our knowledge, PAM is presently the only validated, evidence-based tailoring tool to support services in building individuals’ skills, knowledge and confidence to manage their health and care. NHS England’s Supported Self Care programme is interested in measuring and responding to people’s activation levels.

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How is Patient Activation being used to promote supported self-management?

Supported self-management is part of the NHS Long-Term Plan commitment to make personalised care business as usual. Universal Personalised Care sets out how a comprehensive model of personalised care will be put into practice. Supported self-management is one of six key components of the model.

Patient activation is a measure of people’s knowledge, skills and confidence to manage their own health and is an important principle of supported self-management. Health and care systems that know the activation level of their population can begin to tailor their services in order to support people on a ‘journey of activation’, thus helping them lead better lives at a lower cost to the system.

In 2016, NHS England agreed a licence to use the Patient Activation Measure (PAM) tool with up to 1.8 million people through local health programmes. Learning from the PAM learning set sites has been gathered together to support organisations who have taken up the PAM licences in 2016-17. A web-based platform, the PAM Knowledge, Skills and Confidence network has been set up for sites to share learning with each other, join in discussions and have access to training materials and other useful resources.

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How many PAM licences are needed to assess the activation of the same person over several years?

One licence per person is needed. It can be used any number of times with the same person up to the end of the licence agreement. For licences already secured from NHS England, these are valid up to March 2021.

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Are there other derivatives of the PAM available for people with different needs?

Yes, PAM tools available to use as part of the NHS England licence agreement include the Parent/Carer PAM and validated language translations of PAM derivatives (as required). Use of the PAM tool with a patient and their carer(s)/parents only counts as one licence.

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Is there any learning available about clinician support for patient activation?

In 2014, NHS England surveyed over 1750 clinicians, including doctors, nurses and allied health professionals, to explore their attitudes and beliefs, their self-reported behaviours and practices to support people in taking a more active role in managing their health and care. This used a modified version of a tool called Clinician Support for Patient Activation (CSPAM). The findings from the survey are available on our archived website and it also provides an insight into clinicians’ perceived barriers and their support needs.

The CSPAM tool is available from Insignia Health if you wish to use it as a reflective tool with your clinicians.

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Are there any cohorts for whom PAM is not suitable to use?

Our experience from the Learning Set indicates that PAM may not be suitable for people with conditions such as severe learning disability, severe mental health problems or severe dementia.

The reading age for PAM is 11-12 years. For people with a lower reading age, the Carer and Parent version of PAM is available to use.

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Do we need to complete an Equality Impact Assessment (EIA) for using the PAM?

Equality Impact Assessments (EIAs) are no longer a statutory requirement in England. However, they continue to be used by public sector organisations as a way of demonstrating compliance with public service equality duty.

It is the decision and individual responsibility of each organisation using the PAM to undertake an EIA in line with their local patient activation plans and broader context of how they will use PAM, which will be unique for each locality.

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How can we apply for licences from NHS England?

We are always looking for new sites and health programmes interested in using the PAM tool. Please contact us with your interest and ideas for using the PAM at: england.patientactivation@nhs.net.

Alternatively, you may want to connect with colleagues in your region who have been allocated PAM licences. It may be these sites can grant you a portion of their licenses. To discover if there is currently a PAM site in your area please email the Patient Activation team.

We are interested to learn about other tools that have been developed in this space and are being used locally. If you are aware of such tools, please email: england.patientactivation@nhs.net.

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