This week’s blog has been written by Dr Lisa Kidd who is a member of the Evidence Based Nursing journal team and works as a Professor in Nursing at Glasgow Caledonian University, United Kingdom.  Lisa’s programme of research focusses on supporting person-centred self-management and in this latest blog, she deals with the thorny issue of how to measure person-centredness.

Person centredness is a complex and multidimensional concept; it’s unique and different for everyone. Although its conceptualisation varies across disciplinary and political contexts (Crib and Woodcock, 2022), it is consistently seen as the cornerstone of good quality healthcare. Whilst capturing information about the processes or activities of care are frequently recorded by health services and via disease specific registries, information collected consistently and systematically from people themselves is far less commonplace. Outcomes such as life expectancy and quality of life are of course important, however, people’s experiences of their care matter too.

Person centred care is about delivering care that is personalised, coordinated and enabling (Health Foundation, 2014).  Therefore, it makes sense in addressing the quality and impact of person-centred care, that we capture people’s experiences of:
• whether their autonomy was respected
• whether they felt informed and were involved in making decisions about their care
• whether they were treated with compassion and dignity
• whether they felt their care was integrated and there was good communication, with them but also between the people caring for them
• whether they felt an excessive burden due to the requirements of engaging with their care and,
• if their care was personalised to them and took account of the things that mattered most to them.

Whilst traditional measures of outcomes will always be useful, capturing information on the kinds of questions here can help offer nuance and insight that can help us to understand what’s meaningful to people, what the impact of care is like on their lives, and what we need to think about in making improvements to the quality or nature of the services, care and support that we provide. But this information can only be collected from people themselves. As such, this helps forge a shift in focus from what matters to health professionals and care providers to what matters to the person experiencing care. This firmly puts people and their voices at the centre of our interactions and helps us to offer care that is more tailored and individualised, and thus has a better chance of meeting people’s needs and priorities.

Knowing what information to collect is only part of the story. The other part is about how we can capture people’s experiences in a way that we know we are ‘doing’ good person-centred care. Patient reported outcome measures (PROMS), such as the EQ-5D (Janssen et al, 2013) , are one way to collect information from people themselves. PROMS have been widely used to capture the impact of illness, health status or the effectiveness of care, for example, from the person’s perspective. Research has shown that using PROMs alongside traditional clinical outcome data can help to improve communication, identification of problems and help to tailor care towards people’s needs (Snyder et al, 2013). However, despite rigorous testing and a degree of confidence that they measure what they are intend to, it could be questioned how well these instruments consistently measure what matters to people themselves rather than what matters to health professionals or ‘the system’. This is particularly problematic given that what matters to people is likely to be different for everyone.

Patient Reported Experience Measures (PREMs), such as the Consultation and Relational Empathy (CARE) measure (Mercer et al, 2004), on the other hand, are more commonly used to capture the person’s experience of the care they received and the environment in which they were cared for. PREMs ask questions from a relational perspective focusing on whether people felt listened to or part of their decision-making experience and from a functional perspective, for example, waiting times or facilities available. Whilst quantitative approaches such as these are beneficial, another approach, advocated by McCormack (2022) and Crib and Woodcock (2022) for its ability to offer richness, depth and diversity to people’s experiences, is the use of qualitative methods to evaluate person-centredness. Storytelling has long been an important mechanism for quality improvement. Telling one’s story can shine a spotlight on the good, the bad and the ugly of healthcare and be a powerful driver of change and improvement. Organisations like, Care Opinion (https://www.careopinion.org.uk/), offer a platform for people to use their voice in describing their healthcare experiences and offer a valuable lens for garnering a sense about what matters most to people.
Despite the lack of consensus over how best to measure outcomes that matter to people, there is general agreement about its importance and agreement that we need to be better at doing it. We need more reports of quality and impact from people who have experienced care themselves rather than health care professionals or providers and mechanisms that provide opportunities for the collection and synthesis of different forms of data that can complement each other and help to construct a full and meaningful understanding of people’s experiences and what’s important to them.

Crib A and Woodcock T (2022) Measuring with quality: the example of person-centred care Journal of Health Services Research & Policy 27:2:151-156

Health Foundation (2014) Person Centred Care Made Simple London, Health Foundation

Janssen MF, Pickard AS, Golicki D, Gudex C, Niewada M, Scalone L, Swinburn P, Busschback J (2013) Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study Quality of Life Research 22:7:1717-1727

McCormack B (2022) Person-centred care and measurement: The more one sees, the better one knows where to look Journal of Health Services Research & Policy 27:2:85-87

Mercer SW, Maxwell M, Heaney D, Watt GC (2004) The Consultation and Relational Empathy (CARE) measure: development and preliminary validation and reliability of an empathy-based consultation process measure Family Practice 21:6:699-705

Snyder CF, Jensen RE, Segal JB, Wu AW (2013) Patient reported outcomes (PROs): putting the patient perspective in patient centred outcomes research Medical Care 3:51 (8Suppl 3):S73-9