Types of user and carer involvement in education
Involvement in curriculum planning and strategic development of educational activities
This approach can be put into practice by active user participation on relevant committees, steering groups and other strategic meetings; in general, users should be involved from the inception of any initiative and throughout. This would include facilitating users and carers to think about what areas they feel they could best contribute.
Committee work can be laborious at the best of times and patients/users can all too easily feel isolated, ignored and excluded. Aim to recruit people with experience of this type of work or provide advice, training and support as required. Ensuring at least two user representatives attend a committee allows them to provide mutual support.
Teaching delivered by users to individual students or groups
This may be an opportunity to move towards the user-led end of the continuum, with (for example) the user or carer invited into the classroom to share their experiences. When preparing for such involvement, consider whether you are asking the person to discuss experience of their health condition, treatment, service provision – or all of these things. This approach includes working with service users and carers in healthy contexts, outside the classroom – such as in local projects and user groups. If service users are contributing to teaching, it is also useful to think how they might also contribute in the consequent student assessment.
Fundamental here is that users and carers are given appropriate preparation, support and training (see our FAQ). This support may need to be on-going, from within the Division or elsewhere.
‘Appropriate support’ also includes practical assistance – from the provision of appropriate teaching aids to the nitty gritty of clear details of transport, parking and access. Full details of the session timing, location, student group and expected learning outcomes need to be provided in writing well in advance of the session.
In general, participants who are not qualified teachers will need to be accompanied by a member of academic staff who will provide support before, during and after the session. Unaccompanied participation may be appropriate if the participant is confident and evidence of teaching competence is available.
Exploring user experiences of care
This approach may be observational – watching actual care practices and procedures or examining patients’ records, with the information gathered used critically to study the process of care. However, this kind of ‘passive consultation’ approach may be made richer by having users and carers participate in a more active and collaborative way (such as by in situ discussions, which may be tape-recorded) or by having users leading sessions (as above).
Principles of confidentiality are paramount (e.g. as embodied in the ‘Caldicott Principles’, 1997, Appendix 1 below), as is informed consent, with ethical principles and local guidelines being adhered to. Also relevant are the Data Protection Act 1998 (especially where data may be disseminated electronically) and professional codes of conduct.
Development of scenarios or use of case study material
One interesting approach to bringing the patient experience into the classroom is to work with a small group of service users to develop case study materials or scenarios addressing patient or care-focused concerns about a condition, treatment or service. This may include the sharing of ‘real-life’, complex and distinctive sets of personal and organisational circumstances, tailored or shaped to maintain confidentiality, for use in learning groups with students.
Patient blogs and websites
The are an increasing number of articulate, honest, and often funny weblogs being written by people with particular conditions and undergoing various treatments. Some of these are highlighted in our resources section and can provide a superb introduction to the patient perspective and some of the challenges faced and the resilience shown in managing and living with illness or a disability. these can be used as online resource prior to lectures and class-based seminars.
Service user research
Service users are now frequently involved in health research studies as collaborators and there are an increasing number of service user-led research projects. Results and findings from these studies, especially when they focus on patient experiences or patient-reported outcomes can provide a very rich focus for teaching and learning activities.
Student recruitment and assessment
A number of universities are now routinely involving patients and service users in the recruitment and selection of health and social care students. Participation on interview panels, group tasks and in the development of scenarios, questions and criteria can all be used to ensure the patient voice is heard in identifying suitable recruits. Similarly, although arguably more challenging, there is a growing involvement of service users in the assessment of student practice through the use of portfolios and written feedback.
Appendix 1: Caldicott Principles (Department of Health 1997)
Principle 1: Justify the purposes Every proposed use or transfer of patient-identifiable information within or from an organisation should be clearly defined and scrutinised, with continuing uses regularly reviewed by an appropriate guardian.
Principle 2: Don’t use patient-identifiable information unless it is absolutely necessary Patient-identifiable information items should not be used unless there is no alternative.
Principle 3: Use the minimum necessary patient-identifiable information Where use of patient-identifiable information is considered essential, each individual item of information should be justified with the aim of reducing identifiability.
Principle 4: Access to patient-identifiable information should be on a strictly need-to-know basis Only those individuals who need access to patient-identifiable information should have access to it, and they should only have access to information items that they need to see.
Principle 5: Everyone should be aware of his or her responsibilities Action should be taken to ensure that those handling patient-identifiable information – both clinical and non-clinical staff – are aware of their responsibility and obligations to respect patient confidentiality.
Principle 6: Understand and comply with the law Every use of patient-identifiable information must be lawful. Someone in each organisation should be responsible for ensuring that the organisation complies with legal requirements.