Patient activation and PAM FAQs

Patient activation FAQs

Patient Activation Measure (PAM) FAQs

About Patient Activation in NHS England’s Self-care 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 offers care that is suitably personalised and supports people to recognise and develop their own strengths and abilities. It is an asset-based approach that puts individuals in the driving seat by increasing their capability. It supports people by giving them information they can understand and act on, and provides them with support that is tailored to their needs.

It is closely linked to other concepts such as ‘self-efficacy’ and ‘readiness to change’, and 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.

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

In England, more than 15 million people have a long-term condition (LTC). According to the King’s Fund report, 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. According to another King’s Fund report, 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 equipped to manage their own condition(s).

In recognition of this, the NHS Five Year Forward View set out a central ambition for the NHS to become better at helping people to manage their own health – ‘staying healthy, making informed choices of treatment, managing conditions and avoiding complications’.  In addition, NHS England has a mandate commitment to make sure that people are empowered to shape and manage their own health and make meaningful choices about their care. To meet this commitment, NHS England has established a ‘Self-Care programme’ to scale-up support for people living with long-term conditions (LTCs) to manage their own health and wellbeing, empower them to make decisions about their health and care whilst delivering financial benefit to the wider healthcare system as part of the £22bn efficiency challenge.

As the individual’s ability to successfully self-manage their long-term condition and to stay well at home depends on their knowledge, skills and confidence, it is in the NHS interest to understand what this level is, also called their activation level. This can then be used to ‘meet people where they are’ to support them in ways appropriate to these individuals on their ‘journey of activation’.

Evidence from the Kings’ Fund shows that as the level of activation is improved, people experience better health, have better outcomes, report better experience of care, engage in healthier behaviours, and have fewer episodes of emergency care that leads to lower costs for the NHS. A study by Hibbard et al 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. A Kings Fund report 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, decreasing the risks of silent misdiagnosis.

All of this will help to reduce the pressure on NHS services, improve quality and ensure that resources are focussed on those patients with the most complex health needs.

Why are we using the term ‘patient activation’?

People rightly reject being labelled as patients. The idea of activation can imply an underlying passivity. However, 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. But at NHS England, we recognise that the term may be problematic and not universally liked.

However, we would like to emphasise that this 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’.

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.

A study by Hibbard et al 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 do not understand their role in care process and have limited problem solving skills. Often they have experienced failure in trying to manage and have consequently become passive with regard to their health. 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;
  • Targeting and allocating resources more appropriately to provide more in-depth support to those who are less activated and 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.

Evidence from the Kings Fund report shows 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 activation scores in people – these typically focus on the individuals gaining new skills, encouraging a sense of ownership of their health, 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.

A Kings Fund report has also shown that when patients are fully informed about their options and outcomes, it reduces the gap between what they want and what doctors think they want, decreasing the risks of silent misdiagnosis.

How can measuring patient activation help clinicians?

Measuring patient activation gives the healthcare professionals a starting point to meet the patients ‘where they are’, helping them to tailor their approaches to the individuals appropriately. Using a measure helps the professionals to assess the ability of the person to take on self-management tasks and generally respond to their health needs, rather than having to depend on guesswork. It shapes the agenda for the consultation, including exploring patient expectations and motivations and ways in which the patient’s level of activation may be increased or maintained.

It helps the clinician to focus on the interventions which the patient is likely to both agree to and be able to engage successfully with. It can also help identify where a carer’s help may be needed in, say, adherence to a medication regime. It can help clinicians to monitor progress, for example, where a care plan is being used. 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.

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 are less activated and confident about 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.

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

Studies in the Kings’ Fund report show that targeted interventions can increase an individual’s activation score and their capacity to self-manage their condition more effectively. Less activated individuals need more in-depth one to one support as compared to the more activated individuals. When appropriately supported, evidence shows that the least activated patients 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 improve patient activation will be more successful when supported by a whole system approach including training of clinicians in these new ways of working.

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 get diagnosed with a new condition or have a new complication not experienced before, their level of knowledge, skills and confidence would be lower in response, until they have learned to manage it well. At that stage, their level of activation will rise again.

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.

Some of these were identified by clinicians in a survey done by NHS England in 2014-15.

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 in the Kings Fund report show that targeted interventions can increase people’s activation scores and their capacity to self-manage their condition more effectively; and when appropriately supported, the least activated patients 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 by Hibbard et al 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.

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

Individuals have different 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, as evidenced in the Kings Fund report. 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.

Are there any existing programmes using PAM in the NHS?

PAM has been robustly tested in the USA and is used extensively there. It has also been used in different settings across a number of countries, including Denmark, Germany, Japan, Norway, Canada, the Netherlands and Australia. Results from the Picker Institute study indicated that the PAM is a valid and appropriate tool for use with a UK population as well.

In England, we are currently testing the use of PAM in a learning set of 5 CCGs and the UK Renal Registry with about 100,000 patients with long term conditions from 2014-16. The programme, funded by NHS England, is looking at different ways to embed PAM in local commissioning and delivery systems. The learning set is helping with ongoing learning around:

  • the feasibility of measuring PAM across the NHS;
  • how activation can inform support for self-management;
  • what support clinicians and commissioners need to use the measure effectively; and
  • building the evidence that whether supporting activation can improve outcomes, reduce costs and reduce inequalities for patients in the NHS.

NHS England and the Health Foundation have commissioned the University of Leicester to conduct the independent evaluation of the PAM learning set and some of these findings are available in this interim report.

How can PAM be used in practice?

The PAM can be used as:

  1. a) A tailoring tool – Measuring patient activation gives the healthcare professionals a starting point to meet the people ‘where they are’, helping them to tailor their approaches to the individuals more appropriately. 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. b) 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.

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 at no extra cost. Please email: england.patientactivation@nhs.net if you need the survey in other languages.

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 Self-care programme is interested in measuring and responding to people’s activation levels.

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.

How is Patient Activation being used within the Self-care programme?

The NHS Five Year Forward View set out a central ambition for the NHS to become better at helping people to manage their own health: ‘staying healthy, making informed choices of treatment, managing conditions and avoiding complications’. To meet this commitment, NHS England has established a ‘Self-Care programme’ to scale-up support for people living with long-term conditions (LTCs) to manage their own health and wellbeing, empower them to make decisions about their health and care whilst delivering financial benefit to the wider healthcare system as part of the £22bn efficiency challenge.

Patient Activation is a measure of patients’ knowledge, skills and confidence to manage their own health and is a core enabler for the Self-Care programme. 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.

NHS England agreed a five-year licence to use the PAM tool with up to 1.8 million people through key NHS change programmes, including the new care model vanguards and integrated personal commissioning demonstrator sites. These programmes will have a major impact on how national policy develops, and so have significant implications for enabling person-centred care for people living with long-term conditions. Locally, it is expected that measuring and supporting improvements in patient activation will lead to patients having better outcomes, improved patient experience, increased engagement in healthier behaviour (such as those linked to smoking and obesity), and fewer episodes of unplanned and emergency care.

In May 2016, we invited applications for PAM licences from organisations across the NHS. Applications were assessed for their alignment with our narrative to achieve the wider system shift in their local health economy and ability to support people more to develop their knowledge, skills and confidence in managing their conditions. The list of organisations that were successful in securing licences is available on our website. These include key NHS change programmes such as New Care Model Vanguards, Integrated Personal Commissioning sites and test bed sites. Measuring Patient Activation will support these organisations to become a key partner in NHS England’s Self-Care programme, which will begin to deliver further support later in the year.

Do these organisations need to sign an agreement to use the PAM licences?

Yes, organisations have signed an Affiliate Agreement and a Memorandum of Understanding (MoU) with NHS England.

Is NHS England providing support to successful sites?

NHS England is providing some delivery support alongside PAM licences to the successful organisations/local health economies.

The organisations have the opportunity to attend regional/thematic Learning Sets. They are also benefitting from the experiences of the current Learning Set, who have been using PAM over the last two years in their local areas.

However, these organisations will – plan and implement their interventions that tailor services to empower people to manage their own health. These include training for health care professionals to develop their skills to support patient activation. No direct programme or project financial support is being given to put these interventions in place.

Is there any training available for using PAM licences?

Training workshops and webinars were organised for successful sites in the summer of 2016 in collaboration with Insignia Health and NHS Sustainability and Improvement team. Further webinars are being organised for sites to meet their training needs.

NHS England will also publish some good practice guides shortly that will cover practical questions around the administration of PAM and how to use it effectively. These will capture the Learning Set’s experience of using PAM and recommendations from accepted best practice, e.g. Institute for Healthcare Improvement (IHI), recent guidance from the NHS National Institute for Healthcare Research (NIHR), while others are driven by policy, e.g. co-production, and have been adapted for the context of implementing PAM.

How long are the PAM licences valid?

The licences are valid up to April 2021 in the current agreement.

A PAM licence is constituted as ‘used’ only when it is completed with or by a patient for the first time. Upon the return of a completed questionnaire to the organisation coordinating the administration, the licence’s expiry process will commence.

How many PAM licences do I need to assess the activation of the same person over several years?

You only need one PAM licence per person – it can be used any number of times with the same person up to the end of the licence agreement.

How can we record patients’ PAM data digitally within our local systems?

Insignia Health will send you an interactive spreadsheet, personalised to your organisation, which contains the PAM questionnaire, and will automatically calculate patients’ levels and scores. The spreadsheet can be used to see changes in a patient’s scores and levels over a period of time. This spreadsheet is part of our licence agreement and is separate from using system PAM.

Insignia Health is also in conversation with some system providers to embed the questionnaire and patients’ PAM scores digitally into local health digital systems.

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

Yes, PAM tools available to use as part of the 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.

Please email england.patientactivation@nhs.net if you need to access the measure in languages other than British English.

Is the Clinician Support for Patient Activation (CSPAM) tool available to use with clinicians as part of the licence agreement?

At the end of 2014, NHS England used a modified version of the CSPAM tool and 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. The findings from the survey are available on our website here and it also provides an insight into clinicians’ perceived barriers and their support needs.

The CSPAM tool is not part of this licence agreement. If you wish to use it as a reflective tool with your clinicians, you will need to contact Insignia Health directly.

Can we use the digital or online version of the PAM?

As part of NHS England’s licence agreement with Insignia Health, we are providing organisations with access to paper-based version of the PAM at no cost.

However, should you choose to utilise System PAM (the online Survey and Scoring System developed by Insignia Health), then you will be responsible for the costs incurred. The decision of whether or not to purchase and/or use System PAM is at your discretion and NHS England makes no recommendation and gives no advice in relation to the same.

If a site uses System PAM, is there an issue with sending patient non-identifiable data to Insignia Health’s server hosted in Dublin in terms of information governance? Who is responsible for any risk assessment/due diligence?

You will need to ensure that locally, you complete due diligence and local risk assessment to ensure you are compliant with arrangements to send patient non-identifiable, non-clinical data via the server in Dublin.

If a site wants to embed the PAM spreadsheet into its local IT system, who is responsible for complying with information governance?

Yes, you are compliant with the licence agreement if you want to embed the spreadsheet within your IT system. A site would need to follow the terms of the affiliate agreement, their usual IG protocol and complete due diligence to ensure this complies with local governance rules.

Is the Insignia Health tool ‘Coaching for Activation’ available for use as part of the NHS licence agreement?

No, it is not part of the licence agreement. If you wish to use it, you will need to contact Insignia Health directly.

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.

NHS England will not require an organisation using PAM to complete an EIA. 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.

Will we need to report on our use of licences to NHS England?

Yes, you will need to report on the number of licences used twice a year. We will ask for optional information on the interventions your organisation(s) are using to help develop people’s knowledge, skills and confidence, and improved outcomes noted on an annual/biannual basis.

We are interested in using the local PAM CQUIN with our providers – can we do that?

Yes, you can, provided your vision for using PAM is aligned to our patient activation narrative and you have been successful in securing the use of PAM licences as part of this process.