The term “personalised medicine” is being applied to two distinct medical practices, the healthcare community needs to end the confusion with new terminology, says Jane Wilcock
As healthcare professionals we talk about personalised care, person-centred care, personalised medicine, individualised care and precision medicine. These have distinct meanings, but are often confused as the same thing. By confusing these terms, NHS policy makers, researchers, healthcare workers, and the public miscommunicate. Patients and their doctors need the same lexicon, particularly as patients gain access to their digital personal health records.
Personalised care refers to a wide holistic discussion with the patient, and at times their loved ones, which considers the patient’s context. It requires specific consultation and management skills.
Personalised medicine describes a targeted treatment based on a patient’s tumour or genomic markers. In personalised medicine and cancer care it is easy to see how holistic management around the treatment of cancer, sometimes including end of life care, can be confused with specific therapeutic strategies if the terms are not better distinguished.
A look through recent NHS reports and documents shows how these terms are used interchangeably.
Firstly, there is a generalist, holistic definition of personalised care. Helen Stokes-Lampard, chair of The Royal College of General Practitioners (RCGP), writes about personalised care offering a “person-centred approach to give people more choice and control in their lives, by providing an approach that is appropriate to the individual’s needs.” Likewise, Health Education England states “Being person-centred is about focusing care on the needs of the individual. Ensuring that people’s preferences, needs, and values guide clinical decisions, and providing care that is respectful of and responsive to them.” National Voices, a coalition of charities,3 states “We want person-centred care: people having as much control and influence over their care as possible”. The NHS Long Term plan repeatedly proposes increased person-centred care, in choice and control with personal health budgets and personal digital records to individualise people’s care. NHS England’s Universal Personalised Care publication talks about delivery of personalised care and states “Personalised care means people have choice and control over the way their care is planned and delivered, based on ‘what matters’ to them and their individual strengths, needs and preferences.”
However, the NHS Long Term Plan also alludes to another definition of “personalised care.” The plan mentions identifying a person’s genome, or tumour characteristics, to provide targeted therapies with the aim of improving outcomes for specific subpopulations of people. This is not the widely used definition of shared decision making, or holistic consultation skills, but rather it is about offering more personalised therapeutic options using genomics.
An NHS England report, Improving Outcomes Through Personalised Medicine, states that “personalised medicine is a move away from a ‘one size fits all’ approach to the treatment and care of patients with a particular condition, to one which uses new approaches to better manage patients’ health and targets therapies to achieve the best outcomes in the management of a patient’s disease or predisposition to disease.” This document outlines the genomic advances in creating personalised medicine, and discusses the interaction between environment, lifestyles and genomics, including technology advances like “wearables” to improve personal outcomes and how these can be embedded into mainstream medicine. Cancer Research UK states that “Personalised medicine classifies tumours according to their genetic make-up instead of where they grow in the body, such as ‘prostate’ or ‘breast’ cancer.”
The confusion about how this terminology is applied, occurs across the Atlantic as well. The Mayo Clinic in the USA has a Center for Individualized Medicine which states “individualized medicine, also known as personalized medicine or precision medicine, means tailoring diagnosis and treatment to each patient to optimize care… We’re using your unique genetic code to more effectively and precisely diagnose, treat, predict and eventually prevent disease.” The term individualisation however, also appears in publications on medications, meaning to tailor medicines according to evidence and to our patients’ wishes.
Also in the USA, The National Research Council tries to clarify the situation but for different reasons, by stating that ‘‘‘personalized medicine’ is an older term with a meaning similar to ‘precision medicine.’ However, there was concern that the word ‘personalized’ could be misinterpreted to imply that treatments and preventions are being developed uniquely for each individual; in precision medicine, the focus is on identifying which approaches will be effective for which patients based on genetic, environmental, and lifestyle factors. The Council therefore preferred the term ‘precision medicine’ to ‘personalized medicine.’” A distinction is made that personalised medicine is not totally personalised but identifies subgroups of patients.
It would seem safer and clearer to describe these new advances more exactly as pharmacogenomics, defined by the USA National Library of Medicine as “the study of how genes affect a person’s response to particular drugs” and secondly as theranostics (or theragnostics). Theranostics Australia states that “Theranostics uses specific biological pathways in the human body, to acquire diagnostic images and also to deliver a therapeutic dose of radiation to the patient.”
In my view “personalised medicine” should be dropped as a definition for therapeutic and investigative advances. An improvement is the use of the term “precision medicine”, although “pharmacogenetics” and “theranostics” could be adopted as non-confusing terminologies and these terms better define the new branches of medicine. In this way, primary and secondary care specialists, social care workers and the public, and our patients would all understand the matter being discussed. I would ask national and international bodies to agree distinct terminologies and definitions, which clearly distinguish personalised patient-centred care from personalised or precision medicine by widely using terms such as pharmacogenetics and theranostics.
Jane Wilcock is a GP in Salford, chair of the RCGP overdiagnosis group, and vice chair RCGPNWE faculty.
Competing interests: None declared