Activate the next level of patient engagement

Engaging patients in taking a greater role in managing their health is a core element of current health and public health agendas.

But what does it mean to be engaged? How does engagement impact on health outcomes and can services intervene to improve engagement?

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

As an introduction to patient activation, its measurement, use and implications for policy in England, Supporting people to manage their own health: an introduction to patient activation, a new report from the King’s Fund, provides important new insights to understanding patient engagement and raises questions about how well health services in England meet the needs of the population.

Why activation matters

When we think of “engaged” patients, we typically think of individuals who ask all the right questions, listen to the information they are given and help the clinician feel confident they are going to take the appropriate steps to manage their own health. 

In practice, we know that this is often far from what happens: patients frequently stop taking medication as prescribed, delay seeking appropriate help when necessary, and struggle to maintain behaviours conducive to a healthy lifestyle.

‘Patient activation predicts how likely patients are to have the confidence to follow through and maintain their health successfully’

This is where patient activation is helpful because it does not just capture the ability to understand information and acknowledge their role and skills required, but also predicts how likely they are to have the confidence to follow this through and maintain their health successfully.

Patient activation supports our understanding of what it is to be engaged. The patient activation measure provides a tool for capturing where patients are on a continuum from high to low activation and understanding what this means in practice.

• Putting the patient in the driving seat – an HSJ roundtable

Using the measure in this way researchers have repeatedly demonstrated across a wide range of health conditions, including diabetes, cardiovascular disease and chronic obstructive pulmonary disease, that patients with high levels of activation are more likely to adopt healthy lifestyle behaviours, have better clinical outcomes and report higher levels of satisfaction.

Importantly, patient activation scores are also predictive of the costs of health service use – patients with low levels of activation are more likely to attend accident and emergency departments, be hospitalised or readmitted to hospital after being discharged. 

Wake-up call

We know that 25-40 per cent of the population have low levels of activation. This group is destined not only to have poor outcomes, but lack the skills, knowledge or confidence to change this by using existing services effectively.

This alone should be a wake-up call for health services.

In the US the health system is coming under increasing pressure to reduce costs and support individuals to take a greater role in managing their health. In response large numbers of providers and commissioners are adopting the patient activation measure as a means of assessing the capabilities of patients in order to optimise healthcare provision. Interest is also growing in the UK.

‘It is a tool not of categorising or defining goals but of “meeting people where they are”

In practice using patient activation as a tool is not one of categorising and defining goals but of “meeting people where they are” – putting patients at the centre of care.

Importantly, it is the recognition that one size does not fit all in healthcare provision. 

Whether it is in the context of a clinical encounter or the design of care pathways, patient activation provides an evidence based mechanism to identify people who are likely to struggle in the process of managing their own health.

This enables staff and services to tailor their approach according to capability and support people to build the skills, knowledge and confidence to achieve improvements for themselves. 

Putting into practice

The questions that patient activation raises have led to an interest in whether it could support the health system to become more person centred. The Health Foundation has been at the forefront of this, developing an evidence base for the use of patient activation in the UK.

Its Co-Creating Health programme ran between 2007 and 2012 and was a whole system approach to supporting people with long term conditions on a journey to become more engaged in managing their health. 

With person centred care at the heart of the programme, using patient activation to understand the degree to which people were already engaged in managing their own health and as a mechanism to tailor subsequent support was a crucial element.

For example, 75-year-old Stan lives with three long term physical health conditions; he also feels anxious and low. He does not really understand his different conditions and he would prefer not to – that is his doctor’s job. He gets unwell quite often, but what can you expect?

‘Identifying patients with low activation forms an indicator that the system could do some focused work to support them to become more activated’

The first step of the programme got patients like Stan to fill in a “patient activation measure”.

Identifying that someone like Stan has a low level of activation is not a marker of his own lack of engagement, nor is it a label to justify the fact that he has a number of chronic conditions that are poorly controlled. Instead, it formed an indicator that the system could do some focused work to support Stan to become more activated.

The evidence around interventions to support people like Stan is rapidly accruing so we know that he may benefit from a range of different services including:

• Peer to peer support: one on one support when the patient attends appointments with health or social care professionals and/or one on one or group support to help him manage his health in the community.
• Group education programmes: either peer led (the Expert Patients programme, for example) or professionally led.
• Online support: via an online education programme or online social networks.
• “Coaching for activation”: specialist support to help the patient develop the knowledge, skills and confidence to manage their own health.

In isolation, these interventions may have limited effect but tailored to Stan’s capabilities they can bring about significant and sustained improvements in his level of activation and health outcomes.

As Stan enters the early stages of becoming engaged his progress may well be fragile, but as he grows in confidence he may be able to take on a far greater role. Building a whole system approach to support him on his “journey of activation” presents an opportunity to capitalise on this. 

Big benefits

Organisations involved in the Co-Creating Health programme such as NHS Ayrshire and Arran have found a real benefit to using patient activation to support self-management of long term conditions.

They have developed a whole system approach to patient activation for people who live with chronic obstructive pulmonary disease. 

Providing a local self-management programme, as well as training clinicians in specific skills to support continual improvements in activation after the programme, has led to improvements in patient activation levels.

‘Patient activation saw the significant reductions in unscheduled admissions to hospital and a reduction in overall costs’

Most impressively the provider has seen significant reductions in unscheduled admissions to hospital and a reduction in overall costs as a result of the service improvements that they have put in place. 

The learning from the programme was profound.

The current system is not really designed for people like Stan, so it is no wonder they become disengaged. But the programme also found that a whole system approach using patient activation as a means of supporting patients and clinicians on a journey of empowerment could bring about changes in other “downstream” outcomes such as depression scores or indicators of diabetes control.

Two-way engagement

We often frame our understanding of healthcare around patients’ health conditions and their risk of admission to hospital. Understanding people in terms of their capabilities to actively engage is rarely considered. 

As we design and deliver services ultimately we make assumptions about patients’ abilities and their underlying level of engagement. 

‘Patient activation highlights that a one size fits all approach often excludes or even fails a large number of patients’

Patient activation highlights how, in practice, these assumptions are often inaccurate, and that a one size fits all approach often excludes or even fails a large number of patients. 

Engagement is a two-way street. Patient activation provides a mechanism to understand the capacity of patients to manage their health and ability to meet them where they are; whether it be by supporting them to become more engaged with existing provision, or tailoring services at an appropriate level. 

Helen Gilbert is a fellow in health policy at the King’s Fund and Dr Alf Collins is clinical associate in person centred healthcare at the Health Foundation