4 min read

What on earth are we all talking about?

Defining terms for patient centricity

Much has already happened to enable greater patient involvement in healthcare. Patient-centred care is the new norm. Now, as we look to a future of personalised healthcare, we need to build on this momentum, providing highly tailored, evidence-informed resources to patients and healthcare professionals. These resources need to help people steer their healthcare and to drive outcome improvements. 

But we can only get there if we co-design with the people who will use the resources. And we can only co-design in a meaningful way if we have a lingua franca - a bridging language - that enables all parties to truly collaborate.

So what’s in a label? A hell of a lot. We need to express ideas in a way that is understood. If our stakeholders have to interpret our labels, then things can get ‘lost in the middle’ and cognitive power can get directed to the wrong thing - interpretation rather than ideation. It’s all too easy, for instance,  to get stuck in arguments about what patient centricity means vs. patient focus or patient involvement.

To place a flag in the sand and ensure we all understand each other, here’s how we determine each of these key terms...

Acceptability The extent to which people delivering or receiving a healthcare intervention consider it appropriate, as a result of their cognitive and emotional responses to that intervention 

Co-design Meaningful end-user engagement in the process of ideating, creating, evaluating and sharing healthcare interventions

Co-production An approach applied by a healthcare system to involve patients in the decisions and actions of all parts of that system, from establishing policy through to agreeing long-term care plans

Healthcare A health system’s work to protect, maintain or improve the health of individuals and communities

Healthcare intervention An action, process or resource that has been purposefully developed to improve a healthcare outcome - such as a service, clinical or patient-oriented outcome

HrQoL or Health-related quality of life A person or group’s perceived physical and mental health over time

Patient activation Purposeful activity undertaken in a specific disease area aiming to  empower patients to be involved in decision-making

Patient-centred care Care that enables a person’s specific health needs and desired health outcomes to shape health care decisions

Patient centricity An organisational strategy to work with patients in an open and sustained fashion to develop better products and services

Patient empowerment Purposeful activity undertaken to nurture cognitive, emotional and affective states required for patient involvement and/or self-management

Patient enablement Supporting patients to gain the knowledge and skills required for self-management

Patient focus The immediate result of the implementation of patient centricity within an organisation - the ability for the organisation to understand priority needs from the patient perspective, and to focus activity around these needs

Patient involvement Behaviour between patients and healthcare professionals that enables shared decision-making to occur

Patient-led care Refers to strategic, systemic or structural changes undertaken by a healthcare provider to enable patient-centred care

Patient-reported outcome A report that comes directly from a patient about the status of their health without amendment or interpretation

Patient-reported outcome measure A tool used to capture a patient-reported outcome

Personalised care Healthcare provision focusing on a person’s holistic health status rather than individual illnesses - addressing what matters to the patient and adapting care based on behavioural or social considerations or care planning 

Self-management When patients take responsibility for “living well” with their health condition, having received knowledge or skills from their health system

Shared decision-making Patients and clinicians working together to appraise evidence and preferences to select diagnostic or treatment options

We arrived at these definitions by considering extensive literature on the topic, in particular…

Centers for Disease Control and Prevention 

Coulter et al. (2015)

Damman et al. (2020)

Fader (2012)

Fumagalli (2015)

Jonkman (2016)

Lanar et al. (2020)

Mello (2020)

NEJM Catalyst (2017) 

NHS England

Owens (2012)

Pascoal et.al (2018) 

Patient-Centred Outcomes Research Institute 

Slattery et al. (2020)

Sekhon etl al. (2017)

UCL Partners

World Health Organization

Yeoman et al. (2017)

Feel free to use this list to align your team too. Are there any additional phrases we should define? Or clarifications you would like to make to the list? We’d love to hear from you. Please use the comments box below and we’ll add your ideas to the article.

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