Involving patients in the education of health care professionals

Involvement of patients and carers in their health care has its roots in the ethical imperative of patient autonomy and informed choice. More recently it has been identified as an important component of patient safety. Governments have promoted user involvement in health service delivery, especially in the UK. In addition, the value of actively involving patients and the community in research has been identified. However, how do health care professionals learn how to work with patients and the public as partners in care and research? Where is the voice of the patient in the education of health care professionals? All too often in the process of professionalization that takes place during the basic training of health care professionals, the voice of the patient becomes attenuated. Patients are most often used for learning as passive ‘clinical material’ or audiovisual aids. Learning often takes place in clinical settings, such as teaching hospitals, where patient autonomy is diminished. Students recognize the value of patients’ stories and expertize, yet there can be tension between their educational needs and the provision of patient-centred care. A number of recent developments show that changes are underway. The value of patients taking a more active role as teachers has been recognized. Higher education institutes in the UK are being encouraged to involve patients as teachers and include them more in curriculum design and assessment. O’Keefe and Britten state that ‘lay participation in curriculum development is clearly on the horizon for medical schools’. However, current educational initiatives are varied, isolated and often ephemeral. There has been no forum to share good practice or articulate a coherent framework similar to the rationale for the involvement of patients and lay people in health services or in research. In the case of research, patient and lay involvement has become a requirement of many funding bodies. ‘Where’s the patient’s voice in health professional education’ was the first international conference to address this topic. Held in Vancouver in November 2005, it was attended by 240 delegates both from patient groups and from teachers, researchers and students from schools of physiotherapy, social work, nursing and medicine. The conference presentations described a wide range of innovative educational, research and community initiatives, including: patients on advisory groups helping to define curricula, lay people who give expert feedback to help students learn communication and other clinical skills more effectively, patients who contribute their experiential knowledge as teachers to help students understand the impact of illness and disability on people’s lives, patients who participate as partners in research projects and patients who work with health care professionals to improve services and stimulate in-service learning. Many of the initiatives that were implemented as specific educational interventions originated from the personal experiences and convictions of one or two individuals. To be sustainable and to have more than a transitory impact, they need to be embedded in the culture of the institution. Some of the most complex and systemic models of patient involvement are happening in the UK where initiatives are being driven by government policy. Examples were given of attempts to involve patients in curriculum design and delivery for social work, medicine, nursing, occupational therapy and physiotherapy. However, coverage is patchy at present. They all faced similar challenges in how to translate government directives into meaningful partnerships at a local level. Barriers to the involvement of patients in education range from lack of access to libraries and university buildings, and defensive attitudes of some health care professionals. Volunteer community networks can be fragile and unreliable; individual patients may be unable to participate consistently in educational programmes because of the nature of their illness. What patients want students to know may not be the same as what educators think is important. Health care professionals, who are committed to involving patients, may themselves be marginalized within their own institutions and lack the support and commitment of senior management. Resources are required to pay and train people for their roles as patient educators. If the inclusion of patients as active participants in education is to be more than a passing fashion, evidence will be needed to demonstrate that there are benefits to be had for learners, professional educators and patients alike, and that there is a connection between these benefits and improved outcomes. Evaluation of the impact of patients as educators is scarce The conference was an important first step in establishing genuine collaboration between learners, educators and patients.