Definitions

Before settling on a definition, the Patients’ Association recommends asking what is appropriate for a particular situation in its publication Working Together: An Essential Guide:

“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.

Consider these questions:

• What is the purpose of communicating with an individual or group?
• Will I be giving or receiving information?
• What information will I be passing on?
• Could this be viewed as promotional material?
• What skills, experience or other qualifications am I looking for?
• How will I consider or use the information I receive?

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.

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:

• “Individual Patients” are persons with personal experience of living with a disease. They may or may not have technical knowledge in R&D or regulatory processes, but their main role is to contribute with their subjective disease and treatment experience.
• “Carers” are persons supporting individual patients such as family members, as well as paid or volunteer helpers.
• “Patient Advocates” are persons who have the insight and experience in supporting a larger population of patients living with a specific disease. They may or may not be affiliated with an organisation.
• “Patient Organisation Representatives” are persons who are mandated to represent and express the collective views of a patient organisation on a specific issue or disease area.
• “Patient Experts”, in addition to disease-specific expertise, have the technical knowledge in R&D and/or regulatory affairs through training or experience, for example EUPATI Fellows who have been trained by EUPATI on the full spectrum of medicines R&D.

Some people prefer the term “people affected by” or “consumer” in place of the word patient.

How do “expert patients” differ from patients?

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:

Experiential and academic skills that define expert patients:

This list is not exhaustive (e.g. expert patient participation in physician education should be considered).

Related content in this section:

• Working with patients and patient organisations - a sourcebook for industry
• Principles and agreements
• Definitions
• Events and meetings
• Research and development
• Product launches
• Payment
• Conclusion