Patient activation and PAM FAQs

Patient activation

How can we measure patient activation?

What are the benefits of measuring patient activation?

Changing activation levels

Supported self-management programme

PAM® licences

Information governance

Support available

Reporting

Patient activation

Why is patient activation important to 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 % of all NHS spend but are likely to spend less than 1 % 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 however, 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. 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-manage and stay well at home can vary considerably from person to person. People with long term conditions 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.

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I don’t like the term ‘patient activation’, can we use a different term?

People rightly reject being labelled as patients. The idea of ‘activation’ can imply an underlying indifference to managing an individual’s own health. The concept of patient activation has is widely accepted by clinicians, academics and think-tanks, so at this point in our journey, it is a useful phrase to use. However, at NHS England and Improvement, 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. Therefore, you can refer to a person’s level of skills, knowledge and confidence, rather than their activation level.

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How can we measure patient activation?

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

The Patient Activation Measure (PAM®) is a validated, licenced tool that has been extensively tested with reviewed findings from a large number of studies. It helps to measure the spectrum of knowledge, skills 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 a:

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.

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.

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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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 and Improvement’s licence agreement include the Carer/Parent 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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Are there any cohorts for whom PAM® is not suitable to use?

Findings from the use of PAM with 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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The benefits of measuring patient activation

How can measuring patient activation benefit people?

Evidence shows that people with higher levels of activation (skills, knowledge and confidence) 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 levels of activation can 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 may not understand their role in their care and are unlikely to take up opportunities to improve their health on their own. Often, they have tried to manage their own care and failed. As a result, they’re less engaged in managing their own care, and preventing ill-health. They also tend to see emergency care more often.

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 terms 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. Several programmes have demonstrated the ability to raise a person’s activation level. This typically focusses 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 interventions 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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As a clinician, I don’t have a lot of time. What are the benefits of measuring a patient’s activation level?

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 personalised 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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Changing activation levels

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 the 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 personalised 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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Supported self-management programme

How does supported self-management and patient activation fit with wider parts of the personalised care model?

Supported self-management is one of six key components of the comprehensive model for personalised care. The other five components are shared decision making, personalised care and support planning, enabling choice, social prescribing and community-based support and personal health budgets and integrated personal budgets.

The personalised care operating model shows how all the various components work together to deliver a joined-up approach around the needs of each individual.

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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’ knowledge, skills and confidence to manage their health and care. NHS England and Improvement’s Supported Self-Management programme is interested in measuring and responding to people’s activation levels.

Universal Personalised Care specifically mentions the need to understand a person’s level of knowledge, skills and confidence, using tools such as the PAM or equivalent. PAM is the NHS England and Improvement’s standard default tool to measure knowledge, skills and confidence for most people although, we do recognise that PAM may not be suitable for certain groups and conditions. We are currently working to understand what these groups and conditions are and what other tools are available for measuring patient activation levels.

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PAM® licences

How can sites apply for PAM® licences?

PAM licences are available from NHS England and Improvement as part of the Supported Self-management component of the Personalised Care Programme.  In order to scale up the implementation of PAM and supported self-management we are always looking for new sites and health programmes interested in using the PAM tool. If you would like to apply for PAM licences, please email england.patientactivation@nhs.net for an application form.

Alternatively, you may want to connect with colleagues in your STP or ICS who already have access to PAM licences, who may share them with you. To discover if there is currently a PAM site in your area please email england.patientactivation@nhs.net.

If you are applying for PAM licences on behalf of a PCN as part of the Link Worker Programme, then please email england.pcnpatientactivation@nhs.net.

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What will sites need to include on their application form?

Sites should set out their plans for the use of PAM including the patient cohort they will target and the self-management interventions they will use to increase levels of knowledge, skills and confidence.  Sites should request a minimum of 200 licences in the first instance so that they will have enough data to effectively evaluate use of the tool against improvements in patient behaviours and outcomes.

Completed application forms should be sent to england.patientactivation@nhs.net

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What is the process once an application has been approved?

Once an application has been approved, sites will be asked to sign and date a copy of NHS England and Improvement’s contract documents, known as the Affiliate Agreement (AA) and Memorandum of Understanding (MoU). The Affiliate Agreement will set out the terms of the contract agreement with NHS England and Improvement and the sites responsibilities around PAM licence use. The Memorandum of Understanding is a formal working agreement that will set out requirements for PAM data reporting and training.

Upon receipt of these signed and dated agreement documents, the Supported Self-Management team will contact Insignia Health and request the release of your PAM licence materials which will include blank unique copy of the macro-based scoresheet which will be used to enter PAM data as well as other supporting materials.

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How long will the licences be valid for?

Once you have received PAM licences, you may continue to use them each year and these are not time limited.  Beyond April 2021 we expect licences to still be available and costs will continue to be met centrally by NHS England and Improvement. Those sites with access to licences will not be required to reapply.

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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.

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How do you use the macro-based scoresheet?

PAM licences are issued in the form of a blank unique copy of a macro-based scoresheet which will be used to enter PAM data. A password will also be issued to access the scoresheet. The scoresheet should be stored somewhere where all the practitioners who will be using the scoresheet have access to it. Use of the scoresheet requires an internet connection.

The information to be input into the scoresheet is practitioner name, organisation, patient ID (which is only stored in the attached records page) and the survey completion date. The scoresheet consists of the 13 survey questions with responses ranging from strongly agree to strongly disagree.

Once responses have been input into the scoresheet and submitted, survey data, except for the patient ID, is sent to Insignia Health host server in Dublin to be scored and stored. Survey data, including the patient ID is stored in the spreadsheet for local use. The patients PAM level and score is calculated instantly and should then be coded and recorded within the patient record.

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Are PAM® licences available from NHS England and Improvement in a digital format?

At present PAM licences from NHS England and Improvement are not available for use in a digital format.

NHS England and Improvement have previously explored the purchase of a digital platform for PAM which it was hoped would enable PAMs to be captured, managed and reported on nationally, in a central digital format.  This option was fully explored in a pilot scheme in 2018. The pilot highlighted some areas where the system would work well but also identified some information governance risks and issues affecting the system’s interoperability with the existing digital infrastructure for the NHS. Despite considerable efforts, NHS England and Improvement were unable to effectively mitigate these risks and the decision was taken not to purchase this particular digital platform.

NHS England and Improvement are aware of the demand to make the PAM available in more digitally enabled formats and are currently exploring a range of other digital solutions for PAM that are suitable for the NHS.

We are aware that some sites have developed their own digital solutions for PAM including integration of the PAM scoresheet into their local Electronic Medical Record (EMR) systems. If you would like to find out more about these locally developed solutions, please email england.patientactivation@nhs.net.

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Is there a cost associated with the use of PAM® licences?

The licence cost associated is funded by NHS England and Improvement as part of a national agreement, which covers NHS organisations in England, or organisations working in partnership with the NHS, that are requesting more than 200 licences. The use of PAM to measure and monitor patient activation is central to meeting the aims of Universal Personalised Care and you can assume the licence costs will continue to be met centrally on an ongoing basis.

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Information Governance

Do NHS England and Improvement and Insignia have a Data Processing Agreement in place?

There is no requirement for NHS England and Improvement and Insignia Health to have a Data Processing Agreement in place. Insignia Health is not considered a ‘Data Processor’ because they do not process any person identifiable data. The patient ID that is input into the scoresheet is anonymised, by the ICO’s definition, before it is sent to Insignia.

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Has the system for sharing PAM licences been reviewed following the introduction of GDPR?

Yes, all of Insignia’s policies, standards and procedures have been updated to comply with GDPR.  In addition, the system has been updated to capture patient consent and remove data upon patient request.

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Support available

What resources are available to support the implementation of supported self-management approaches?

A web-based platform, the knowledge, skills and confidence workspace 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. For access to the workspace please contact england.patientactivation@nhs.net.

There are a number of resources available on our web pages including the Quick Guide to implementing PAM. Once an application for licences has been approved, sites will also be given access to Insignia’s e-learning programme.

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What evidence is available for supported self-management?

Evidence shows that by understanding a patient’s activation level and tailoring support to manage their LTC 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.

Studies have also shown 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.

Another 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. 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.

For more information please visit the ‘Evidence for supported self-management web page.

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Reporting

Do I have to provide regular reports for NHS England and Improvement?

Currently, NHS England and Improvement receive the raw data from Insignia on a quarterly basis and produce reports for sites. These are sent out to sites via email in the month following the quarter;

Q1 April – June (July)

Q2 July – September (October)

Q3 October – December (January)

Q4 January – March (April)

Sites have access to their own data which is stored locally within the scoresheet. You may wish to analyse the data on a more regular basis. If you identify any discrepancies between your local data and the data provided by Insignia, then please let us know england.patientactivation@nhs.net.

Where sites have identified any discrepancies, we may ask them to ‘validate’ their data before we include it in the national licence usage figures. The reports provided by NHS England and Improvement give a cumulative figure since the site started using PAM licences. In order to get the  quarterly licence usage, the figure will need to be compared with the licence usage in the previous report.

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Why are my quarterly reports showing multiple versions of the same organisation, blank organisations or test organisations?

The names of organisations within the quarterly PAM reports come from a free text box called “Your Organisation” within the PAM scoresheet. If the text entered into this box does not exactly match a previous record it will be considered a separate organisation. This includes any variation on the abbreviation of the organisation and any misspellings. It will also include any blank responses as an organisation without a name. Unfortunately, we are unable to verify these organisation names when we process the data. The best way to avoid this is to ensure all PAM administrators are recording a consistent organisation name when administering the PAM.

You may also see organisations called something like “test”. However, as PAM is a licensed tool we cannot discount “test” entries and therefore they will automatically be included within the license usage of the lead PAM site. If you require a demonstration of PAM working for training purposes, please contact the Supported Self-Management team at england.patientactivation@nhs.net.

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