Introduction: The challenge of person-centred care
Over recent years the push for the NHS to become more person-centred has been mounting, with increasing attention paid both to the importance of patients’ experiences of care and supporting them to manage their own health. This emphasis is made clear in the vision laid out in the NHS Five Year Forward Review. Despite these policy drivers and good intentions, truly person-centred care too often remains elusive.
‘Patient activation’ describes the skills, confidence and knowledge a person has in managing her/his own health and healthcare. Recent research has suggested that improvements in patient activation levels can be maintained over time and are associated with better self-management and lower healthcare service use. The Patient Activation Measure (PAM) uses patients’ responses to a set of questions to generate a score placing people at one of four levels of activation, each providing insight into a range of health-related characteristics, including attitudes, motivators, behaviours and outcomes.
How could the Patient Activation Measure be used in the NHS?
Although it has been validated for use in the UK, little is known about how this tool could best be implemented and used in the NHS context. To find out, NHS England is working with five Clinical Commissioning Groups and a disease registry to pilot the Patient Activation Measure.
To maximise the learning from the experiences of these six organisations, the Health Foundation and NHS England have together commissioned an independent qualitative evaluation of whether and how the PAM could be used in the English healthcare context. This aims to aid and inform any future attempts to use the PAM more widely in this country so that lessons learned from the pilot projects are not lost.
The aims of the evaluation, which I’m leading together with my colleagues Liz Brewster, Carolyn Tarrant, Graham Martin and Brad Manktelow, are to:
- Understand how the PAM is being used, and how this develops over time;
- Explore the impact of using the PAM in participating organisations at a range of organisational and individual levels, including the perceptions and experiences of people with long term conditions;
- Explain why the participating organisations are using the PAM in the ways they are, and the impact of context and setting on the use of the PAM;
- Provide useful and constructive feedback to the organisations as they pilot using the PAM;
- Produce generalizable, practical evidence for the future, share knowledge and learning, and disseminate findings.
Diversity of approaches being used
The pilot project avoids putting a very inflexible programme structure around the six organisations’ activities, nor does it limit how the Patient Activation Measure should be used. Instead, it seeks to facilitate organisations using the tool in ways they think will be beneficial and actively embraces the diversity of ways in which they are seeking to do this. Though a fascinating ‘natural experiment’ to watch unfold, it poses challenges for evaluators because:
- The six organisations are all doing a lot of quite different things – most are using the PAM in at least two or three different ways;
- Plans and activities are sometimes changing quite quickly, as plans are developed, tested and tweaked;
- The timescales of all six projects are different; and
- The scope of projects varies enormously – from one general practice to a city-wide initiative.
Evaluation approach needs to be able to work with, and capture, all of this
It’s been clear from the outset that our brief is not to directly compare the performance of the six participating organisations, but rather to capture the complexity of all this pilot work and to reach some conclusions about the feasibility of using the Patient Activation Measure in the NHS. So how are we going about this?
We’re drawing on diverse forms of evidence, including interviews, observations and documents, and collecting data at several different stages as the project progresses. Our analysis involves moving between different viewpoints and data sources in order to produce a comprehensive account of how these organisations’ use of the PAM has played out. The approach is flexible, to ensure that the evaluation is able to respond and remain appropriate as the project and the organisations’ use of PAM evolve over time. The aim is to understand the role of local contexts in determining how the PAM is used, and in assessing what effect those factors and differences have on how the PAM works.
We’re combining a high level work package focused on understanding how and why programme commissioners and managers have opted to use the PAM in the ways they have, with a frontline work package looking in detail at a diverse sample of six projects as patients and healthcare workers use the PAM in practice.
So, how are we doing?
Well, we think we’re doing ok – although Liz (the project researcher) and I do sometimes have to have a sit down and a biscuit or two as we make sure we still understand the full complexity of what six organisations are doing across 20 or so projects! You can take a look at the Early Findings Report that the Health Foundation and NHS England have just published and see what you think. In the meantime, we’ll be busy working on the next interim report which we’re due to deliver at the end of November. This builds on the Early Findings Report by continuing to reflect on sites’ progress, successes and challenges. It will also report some of the early findings from our ‘sharp end’ focus on using the Patient Activation Measure at the frontline, thereby starting to bring together insights into PAM implementation at both the strategic and frontline levels.