A guest blog from Chris Graham, Chief Executive at Picker.

Picker is a charity with a vision of “the highest quality person centred care for all, always”: It is this vision that has fuelled our work, ensuring patients and service users remain at the heart of care services.

Our late founder, Harvey Picker, has been credited with popularising the phrase “no decision about me without me” . That phrase became a centrepiece of UK government policy on health and social care from 2010, when it was adopted and amplified by the then Secretary of State for Health, Andrew Lansley.

Despite policy commitments and a growing body of research that highlights the overwhelming benefits of shared decision-making, the reality doesn’t reflect the demand. Recent major surveys have revealed patients and service users continue to experience care that is not person centred. Hospital inpatients discharged in November 2020 were asked in a CQC survey how much the staff looking after them involved them in decisions about their care and treatment. Almost one in five (18%), said “not very much” or “not at all”. NHS England’s 2021 Cancer Patient Experience Survey produced similar results. More than 20% were not “definitely” involved as much as they wanted to be in decisions about their treatment.

A lack of involvement is not just a question of shared decision-making. It also speaks to the extent to which health care services orientate themselves – or fail to orientate themselves – around their users. Where practice remains paternalistic, it can reflect an implicit assumption that clinicians know what patients want and what matters to them – or worse, that understanding individuals’ preferences is not a priority.

One of the fundamental tenets of person centredness is “involvement in decisions and respect for preferences”: this is one of the eight domains of Picker’s Principles of Person Centred Care. To be able to respect people’s preferences, providers and professionals must first understand what matters to them as individuals. Eliciting this information is an important skill – but it can be impractical and tiresome for patients to have to repeat their preferences at every interaction. A documented and shared record of people’s preferences would allow staff to enter conversations with patients with an understanding of them as individuals. This is particularly crucial where, as is increasingly the case, care needs to be coordinated across multiple professionals and providers.

This is why we support PRSB’s ‘About Me’ standard. It provides a platform for patients and service users to use their voice and share what matters most to them in their own words. Using this information, providers can create and share a powerful, portable and personalised record of individuals’ needs and preferences. The adoption of the About Me standard will also help providers access the types of information needed to be able to address many of the Picker Principles. For example, understanding how people prefer to communicate and receive information supports the principle of “clear information, communication, and support for self-care”, whilst recording ‘who [is] important to me’ encourages appropriate “involvement and support for family and carers”. We particularly welcome the standard’s focus on capturing the most important things that individuals want to be known about them: this is a true embodiment of person centredness.

We encourage all providers to adopt and use the About Me standard as part of their approach to care. Doing this will help elevate and amplify people’s individual voices in health and social care practice, support a better understanding of the things that matter most to them, and promote person centred care for all, always.