Measuring patient involvement is hard, but we must do it

The Department of Health’s Mandate is clear, the objective spelled out in plain language: the NHS must become dramatically better at involving people with long-term conditions in their own healthcare and empowering them to manage their care and treatment.

So how will we measure whether this objective is met?

The objective is intended to help enhance the quality of life for people with long-term conditions, which is one of five desired outcomes in the NHS Outcomes Framework for England. The Mandate isn’t entirely clear about what should be measured to assess NHS progress in better involving people. It says that meeting this objective ‘means that far more people will have developed the knowledge, skills and confidence to manage their own health.’ The Outcomes Framework, which identifies the specific areas for which progress will be expected, points to the ‘proportion of people feeling supported to manage their conditions.’

Both the level of people’s knowledge, skills and confidence and the proportion of people feeling supported can be useful indicators of how effective the NHS is at supporting patient involvement. But it’s important to recognise that they are not the same thing, and each would require distinct measurement tools.

People who have the knowledge, skills and confidence to effectively self-manage a long-term condition are considered ‘activated’ in their health and healthcare. Activated people are able to play a greater role in their care and treatment, and are more likely to adopt healthy lifestyles. The Mandate’s emphasis on knowledge, skills and confidence is smart, as evidence shows that increasing patient activation can lead to improved health behaviours and, therefore an enhanced quality of life.

One validated measure of patient activation already in use is the Patient Activation Measure (PAM), a method that assesses the knowledge, skills and confidence that patients with long-term conditions have in managing their own health and healthcare by looking at four levels of patient involvement: starting to take a role; building knowledge and confidence; taking action; and maintaining behaviour.

In contrast to levels of patient activation, the proportion of people feeling supported to manage their conditions seems a bit squishier. A patient may ‘feel supported’ to manage his or her condition, but that may not translate into the patient being capable and confident to do so. It’s not as easy to see how ‘feeling’ supported, which is not the same as actually being supported, can lead to an enhanced quality of life for people with long-term conditions.

In addition, the Health Foundation’s experience in measuring perceptions of health services shows that it is a challenge to develop measures that yield precise results. For example, in our shared decision making programme (MAGIC), when patients were asked if they were involved as much as they’d like to be in decisions about their care, the answer was almost always ‘yes’ and people gave reasons such as, ‘I have a great doctor’. The responses suggest that people’s answers were more of a reflection of satisfaction with their overall experience than with their level of involvement – again, two very different things.

The upshot of all of this is that it’s hard – hard to define what to measure and hard to define how to measure progress on involving people in their own care and treatment.

If the NHS Commissioning Board is serious about enhancing quality of care for people with long-term conditions, it must measure both patient activation and feelings of being supported. Those indicators should be refined and added to, if necessary, and appropriate measurement tools must be developed and tested to ensure that they are an accurate reflection of NHS progress.

The Health Foundation will continue to explore measures of patients' involvement and their ability to manage their own care and treatment. The task ahead for the Commissioning Board – and all of us who care about enhancing quality of life for people with long-term conditions – is to ensure that improving patient involvement is at the heart of the NHS.

Sondra is a Policy Manager at the Health Foundation.