Person-centred care has a strong presence in the general health care agenda at the moment, and rightly so, in my opinion. As a way of designing, organising and delivering care, it is radically different from a traditional healthcare model, which often involves long established hierarchies and a power imbalance between those providing and those receiving care.
Yet much of the evidence, reporting and discussion about person-centred care continues to replicate this traditional model. My concern, therefore, is whether we as a community are having the right conversations in the right way about it. The old saying “horses for courses” springs to mind – person-centred care is a very different course, so maybe we need to think about what sort of horses (i.e. evidence) we need in a person-centred care context?
The first challenge is recognising that peer-reviewed quantitative evidence isn’t the sole resource for the answers to many of the questions about person-centred care. It is clearly a great format for some questions, and absolutely has a place. But it should be able to coexist with other forms of evidence and discussions. Increasingly patients and others are publishing valuable thinking and resources that never reach a peer-reviewed journal. This amalgamation of approaches is being seen in the ideas behind evidence based medicine, where evidence and clinical skills are combined with patient values. Interestingly, some of the evidence-based medicine work has highlighted shortcomings in traditional evidence formats.
The second challenge is how we can have an open discussion and ‘co-design’ person-centred care if patients and patient leaders can’t access most of the articles? Open access to journals and other publications is becoming more common, and should be encouraged for articles with a direct relevance to patients. When everyone has access to the same information, people from all backgrounds from different health disciplines to interest groups and individuals, are better able to be involved in the conversation.
The third challenge is whether we are getting the content right. Articles that have been peer-reviewed by health professionals are widely perceived to be the gold standard. Do we need to think more broadly about what we mean by ‘peer’ to really justify that status? Any article or paper about health can count patients and carers within the catch-all of ‘peers’. The BMJ have recently established a scheme for peer reviewers, and I believe that this approach needs to be adopted more widely. In this way, articles will start to address the key aspects of person centred care. Being a patient isn’t mutually exclusive to being able to comprehend data and evidence, but the reality is that there is rarely an opportunity for people to engage in those conversations.
So getting these traditional forms to adopt a more patient-centred approach is one possibility, but there is risk of that feeling a bit ‘round peg, square hole’. The qualitative evidence that comprises of patient reported measures, experiences and perspectives should have a recognised and acknowledged place in our evidence pool and reading lists for person-centred care. The age-old dominance of quantitative professionally peer-reviewed reporting hasn’t got a person anywhere near the centre, put there, imposed or otherwise. A recent Evidently Cochrane blog summed up this well saying, “numbers aren’t necessarily an indication of quality of life”
As Alf Collins described in his recent thought paper for the Health Foundation, Measuring what really matters, focus is given to things that can be measured, not necessarily because they are important (to patients). PREMS, PROMS, PCOMS and PCMPs all have a role in the evidence sphere, and patient-authored articles as well as co-produced articles (written between patients and professionals) are beginning to emerge.
Supporting the publishing and reading of reports, articles and other such sources about person-centred care that are written in a way that embodies all the principles of person-centred care is essential. Dr Richard Lehman, GP, commented at an evidence-based workshop in January 2014 that “shared decision-making and patient-centred evidence is the unicorn not yet found”. I can’t help feeling that we might be looking for evidence in the wrong places and wrong formats.
It is clear that person-centred care is going to need a broader repertoire of accepted sources and evidence. It has already started to break the mould in how healthcare is delivered, now it needs to do so in the arena of evidence and journals?