The Impact and Value of a Patient and Carers Group involved in Professional Health Care Training

The aim of this research is to ask questions about the integration of the ‘Patient and Carer Group’ in training programmes at the University of Leicester mainly in the Medical School and also Clinical Psychology and the School of Allied Health. This research will follow the hermeneutic phenomenological approach informed by Martin Heidegger [1889-1976] and Hans-Georg Gadamer [1900-2002], which underpins this study. This is because this work is multifaceted and dialectical in nature with multiple levels of meaning inherent within it. This interpretive study seeks to uncover and reveal those aspects of patient and carers, students and academic staff concerning what it means to engage patient and carers within health care training. The researcher will dwell within the Patient and Carer Group to gain a deeper understanding of, the nature of events as experienced in everyday life, a more thoughtful approach to the development of ‘being’ and ‘becoming’ part of a faculty might mean for those from a range of groups including the ethnic and marginalised groups.

Questions:
• How do students value the in-put into their training of the patients/carers?
• How do members of this group experience being part of a university?
• What are the challenges for representation across the cultures?
• What are the challenges for faculty (teachers and administrators) in working with patients and carers?

Background
The patient’s voice in health and social care education, has moved from a passive role, patients as subjects or cases in clinical placements, to a more active person-centred role where patients engage in teaching as partners to share their lived experiences often in a classroom and other setting. Patients are now recognised and valued as teachers helping to shape curriculum (Spencer et al., 2011). Learning with people who can share their personal experiences shapes professional attitudes for compassion and empathy, while seeking greater understandings of how to involve patients in all aspects of their care, including shared decision making (Towle et al., 2016). More recently in the UK the patient voice has been recognised as pivotal for understanding the imperative of safe care (Berwick Report, 2013).

There are still concerns about whether patient involvement is embedded in professional programmes (Towle et al., 2016). Many health and social care programmes are still working to understand what it means to involve patients and carers in a curriculum. Early successes from mental health nursing and social work have recently been followed by professional body requirements for others to follow including medicine, nursing and pharmacy and in these later adopters patient involvement is under-researched (Tew, Gell & Foster, 2004; Beresford et al., 2006; General Medical Council 2016; Health and Care Professions Council, 2010). As the patient voice is relevant for all professions there have been calls for patient involvement to be an interprofessional concern (McKeown, Malihi-Shoja & Downe, 2010; Anderson et al., 2011). Overall programme leaders have little guidance on how to offer high quality education in partnership with patients. Progress in patient involvement in medical education remains relatively light touch with calls for theoretically informed perspectives (Spencer, 2016). In many cases passive patient involvement characterised by “paternalism” and “medical gaze” is the norm and there are few examples of true partnerships with patients in leading teaching roles (Regan de Bere, & Nunn, 2016).

Perhaps one of the most concerning aspects in this work is the ability of schools to support patient and carers who represent the local populations who use services. In a recent set of statements on the state of patient involvement there were concerns that: “Involvement is often limited to a specific population of patients rather than reflecting the diversity of lived experiences…” (Towel et al., 2016 pg.19).
At the University of Leicester healthcare programmes have supported patients in their programmes for some time. Leicester Medical School formally launched a partnership agreement with patients in 2016, with patients writing the Framework with academics for the ‘Patient and Carer Group’. The group of over 70 people has grown from well-established patient involvement which started in 1998. The new Patient and Carer Unit has a formal accountable system, a core group and continues to work to involve a wide representation of local people. It is recognised that patient involvement requires energy, an infrastructure and sufficient resources (Towle, et al 2016).

Since the early initiative there has been a number of challenges in managing expectations, faculty development as well as questions concerning the cost and benefits to the curriculum. There are also concerns about the limited number of people representing the breadth of the cities diverse populations. This group is shared with the Schools of Allied Health while others work with clinical Psychology students.

How to apply
Apply to Health Sciences at: https://www2.le.ac.uk/research-degrees/phd/applyphd?uol_r=78572a95