Patient Activation Measure: learning from early adopters

Source: NHE May/Jun 16

Dr Natalie Armstrong, senior lecturer at the University of Leicester and co-lead of SAPPHIRE Group at the Department of Health Sciences, discusses some of the key learning to emerge from an evaluation of six pilot sites putting the Patient Activation Measure to the test.

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 ‘Support for Self-Care programme’ to scale-up support for people living with long-term conditions. 

A key part of this work is an increased focus on measuring people’s levels of knowledge, skills and confidence in taking a more active role in their own health and care. This is known as patient activation, a construct developed in the US and which maps clearly onto person-centred care principles. The concept is potentially most applicable to the need to offer care that is suitably personalised, and that supports people to recognise and develop their own strengths and abilities. 

Activation levels 

The Patient Activation Measure (PAM) is a measurement scale of patient activation based on patients’ responses to questions that assess an individual’s knowledge, beliefs, confidence and self-efficacy. The resulting score places a person at one of four levels of activation: 

  • Level 1: Disengaged and overwhelmed
  • Level 2: Becoming aware, but still struggling
  • Level 3: Taking action
  • Level 4: Maintaining behaviours and pushing further 

Recent research has suggested that improvements in patient activation levels can be maintained over time and are associated with better self-management and lower use of healthcare services, hence the growing interest in using both the construct and its measure within the NHS. 

Early evaluations 

The measurement of patient activation is positioned as a core enabler of NHS England’s emerging Support for Self-Care programme. As part of this, NHS England has recently announced the use of PAM with up to 1.8 million people and invited organisations to apply for licences for a new five-year period. This follows on from the ongoing learning from the NHS England-facilitated learning set in which six organisations (five CCGs and the UK Renal Registry) have been piloting the use of the PAM. 

The team I lead, which is based in the SAPPHIRE Group at the University of Leicester, is conducting an ongoing independent qualitative evaluation of this learning set’s work, jointly funded by the Health Foundation and NHS England. This qualitative work will be complemented by quantitative work being done in-house by the Health Foundation. 

While the PAM has been validated for use in the UK, the work of the current learning set, and our evaluation of it, is providing the learning on how to best use and implement it in England. This evaluation started in late 2014 and will be completed early in 2017. A summary interim report with key practical learning was published alongside the recent announcement of PAM licences from NHS England in a bid to share the findings to date with those planning to use the PAM in the future. 

Small to large-scale projects 

The organisations within the learning set are working across multiple projects to measure patient activation in different healthcare contexts, with different patient and professional groups, and with different aims, all broadly centred on the aim of improving person-centred care and patient self-management of their long-term conditions.

Initiatives range from quite small-scale projects through to the introduction of the PAM as part of major system level changes seeking to enable person-centred care. The PAM is being used in a range of ways within these initiatives, such as: acting as an outcome measure for some kind of intervention or service; as a tailoring tool within an intervention to ensure it is as person-centred as possible; to help inform decisions about the most appropriate referrals; and, increasingly, as a higher level system metric. 

Overcoming potential barriers 

All of these possible uses bring their own benefits and challenges, and there is still a lot of learning to be done about how best to implement and integrate the measurement of patient activation into care. Key questions that the learning set organisations have tackled, and indeed are still tackling, include how, when, for what purpose, and by whom the PAM might most helpfully be used. Clarity of purpose is key here and can really start to reveal the answers to these questions. 

As an example, one of the ways in which the PAM looked like it might be of use was as an outcome measure to assess the impact of an intervention. Here, organisations have had to think carefully about what change in patient activation score they might reasonably expect to see following any particular intervention, and over what period of time. Therefore, while using the PAM in this way may be possible, this learning has led NHS England to encourage the use of PAM as a tailoring tool in the next phase and not as a pure outcome measure. 

Issues of language, literacy and comprehension when using the PAM have been identified at most sites, which may mean that people are not able to complete the PAM by themselves. As well as specific concerns about how accessible the PAM is to groups with English as a second language, the American English of the original PAM has been seen as problematic and an Anglicised English version of the tool has recently been developed. 

Organisations have been thinking through the populations they serve and how best to adapt the PAM for these. As an example, one CCG spent significant time considering alternative methods of delivering the PAM to different patient groups, including a ‘storyboard’ version and spoken versions in community languages which do not have a written form. However, the validity of any new PAM versions would need to be tested. 

In our evaluation work, we have seen organisations and the individuals working within them take different approaches to whether mediated completion is used, ranging from simply repeating the question through to what is essentially co-construction of the responses between a health professional and a patient. None of these solutions is without problems and sites continue to reflect on the challenge of mediated completion. 

ThinkstockPhotos-477510971 edit edit

Optimistic shift to personalised care 

There are trade-offs to be made here – maintaining the validity of the tool, which is psychometrically validated and requires close adherence to the wording of questions, may come at the cost of less meaningful completion, especially if patients do not really understand what they are being asked and how best to answer. 

The process of co-constructing the responses was felt by some healthcare professionals to be valuable in helping them better understand their patients’ views, and some believed there may be more value in the completion process than the resulting score or level. 

Despite the challenges faced, the learning set organisations remain positive about how the PAM might contribute to delivering person-centred care. 

They are optimistic about its potential to help bring about a shift from a healthcare provider-focused, paternalistic model of service delivery to a more personalised, holistic, multi-provider model in which the patient is given the most appropriate support to self-manage.

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