“Whilst it is important to be aware of semantics, it is perhaps of greater importance to be aware of the context in which you are working. Individuals should be asked at the beginning of any project how they would like to be identified. This will help to ensure people involved have a form of self-identity they feel comfortable with, and empowered by.”
In other words, avoid assumptions. It may also be true that a person or group will have a different definition depending on the role they are taking in a particular activity or have overlapping responsibilities.
Definitions will have an impact on what information you can provide to someone and how you can work with them. For example, you should be aware that the ABPI Code states that “prescription only medicines must not be advertised to the public” (Clause 26.1), reflecting UK regulations relating to advertising – and the public includes patients, of course.
The ABPI Code provides a series of definitions in Clause 1 for health professionals, other relevant decision makers and healthcare organisations.
ABPI Code – Clause 1
The term “health professional” includes members of the medical, dental, pharmacy and nursing professions and any other persons who in the course of their professional activities may administer, prescribe, purchase, recommend or supply a medicine.
The term “other relevant decision makers” particularly includes those with an NHS role who could influence the administration, consumption, prescription, purchase, recommendation, sale, supply or use of any medicine but who are not health professionals.
The term “healthcare organisation” means either a healthcare, medical or scientific association or organisation such as a hospital, clinic, foundation, university or other teaching institution or learned society whose business address, place of incorporation or primary place of operation is in Europe or an organisation through which one or more health professionals or other relevant decision makers provide services.
The ABPI Code defines who is covered by Clause 27 on relationships with patient organisations:
“27.1 Pharmaceutical companies can interact with patient organisations or any user organisation such as disability organisations, carer or relative organisations and consumer organisations to support their work, including assistance in the provision of appropriate information to the public, patients and carers.”
EFPIA gives the following definition of patient organisations in its Code of Practice on relationships between pharma and patient organisations.
“Patient organisations are defined as not-for-profit organisations (including the umbrella organisations to which they belong), mainly composed of patients and/or caregivers, that represent and/or support the needs of patients and/or caregivers.”
The European Patients’ Academy on Therapeutic Innovation (EUPATI) uses the term “patients” to cover all the following definitions:
Some people prefer the term “people affected by” or “consumer” in place of the word patient.
Legally, there is no difference. So how and why would you make a distinction? It depends what you want to do. A patient who has participated in many events, for example, may be able to give useful feedback on the quality of a conference or best practice in patient involvement. Another consideration is what information you might want to share, and how you would want to share it.
There are many different definitions of an expert patient, including the technically-trained patient in the EUPATI definition above; or someone who has taken part in a course on self-management for people with a long-term condition. More informal, subjective definitions focus on the skills and experience of the patient in terms of their ability to communicate confidently and effectively, perhaps taking a broader view based on more than just their own experience.
It could be a combination of experience of an illness, plus the wider knowledge of current thinking about a disease, and the ability to communicate meaningfully in a way that helps educate pharmaceutical companies and health professionals.
The table below (from The Expert Patient: towards a novel definition – Jean Francois Cordier, The European Respiratory Journal) gives some useful examples of the different skills that could define expert patients; they might have different combinations of academic as well as experiential skills:
|Personal knowledge of illness and treatment||Knowledge of the disease and treatment|
|Education as a patient, including self-management||Academic education as an educator/teacher|
|Participation as an educator/teacher with health professionals in patient education, including self-management, and taking into account patient values and priorities for clinical decision-making|
|Collaborative relationship with the general practitioner and proximity specialist||Collaborative relationship with academic specialists|
|Membership of patients’ associations||Responsibilities in patients’ associations (e.g. as a board member)|
|Attendance at local patient meetings||Attendance and active participation in regional/national/international patient meetings|
|Participation (as a patient) in clinical studies/therapeutic trials||Participation as a partner in the design of clinical studies/therapeutic trials|
This list is not exhaustive (e.g. expert patient participation in physician education should be considered).