Written by Rachel Weiss
One of the goals of the “Patient Partner Project” is to develop a socially-responsive communication curriculum for Health Sciences students. This type of curriculum has to be pursued by following a meticulous, collaborative process involving all relevant stakeholders. The Patient Partner Project has taken on this challenge, by bringing together three core groups of stakeholders: a multidisciplinary academic ‘Staff Partner’ team (doctors, psychologists, social workers, physiotherapists, nurses and a linguist), a ‘Student Partner’ team (undergraduate South African medical students; Dutch and Belgian social worker students; Finnish multimedia students; and South African postgraduate students in the fields of Health Sciences Education and Adult Education), and, most importantly, a ‘Patient Partner’ team (ten lay people recruited from communities around Cape Town as ‘experts by experience’).
Recognizing the ‘expertise’ of these ‘ordinary’ people is crucial to the ethos of the project, especially since most Patient Partners (PPs) hail from historically and socioeconomically disadvantaged backgrounds and contexts. This recognition led to the innovative approach of using Applied Improvisation methodologies in the PP recruitment and selection process. Since then, five female and five male PPs have embarked on a unique journey, designed to empower each PP and develop them as a ‘resource’ for students’ learning. The participatory goals envisioned for the PP team includes a role in the design of the communication curriculum (such as informing content), implementation of the curriculum (such as role-playing case scenarios) and formative assessment of student learning (such as providing feedback to students after interactions). This holistic approach to participation requires a similarly holistic training program which focusing on developing PPs as reflective, empathetic and emotionally robust human beings (‘being a Partner’), as well as on targeted skills (playing their ‘avatar’ authentically during case scenarios).
Over the past few months, the PP team have participated in a variety of workshops with differing training agendas. In ‘What is culture?’, PPs reflected alongside SA students on how their different cultural backgrounds impacted on communication in the health care system. Another session focused on unpacking the roles, responsibilities and expectations of patients and health care providers in encounters on the clinical platform. Perhaps unsurprisingly, all the PPs felt that they were receiving ‘quality care’ when the care provider listened attentively and addressed their fears and beliefs in a culturally-appropriate way, regardless of whether their medical condition actually improved. The rich discussions and feedback generated through these training sessions, go a long way to foregrounding the patients’ perspective and highlighting the need to develop a curriculum that formally includes these so-called ‘soft-skills’.
The PPs have also gained more insight into the difficulties of crafting a socially-responsive communication curriculum. For example, after recounting some of their experiences of ‘poor communication’, they were asked to formulate a response that they, as patient, would have found more acceptable. Some PPs found this exercise very difficult, and as such it contributed significantly towards their own development of empathy – a key principle in providing feedback to students. PPs also developed more insight into their own personal ‘blind spots’ in interaction with others. One PP realized that heightened sensitivity about her weight contributed unfairly to her criticism of doctors on this topic, and that she had not realized how important detailed information on eating habits were to a medical history.
In addition to the structured workshop-style training sessions, the PPs have also participated in a series of more creative, practical and organic sessions aimed at increasing ‘mindfulness’ in communication encounters. These sessions were facilitated by Alison Lazarus, an experienced international Peace Facilitator and the Managing Director of Zakheni Transformative Arts Centre, an NPO and our project’s formal associate partner.
A core skill required of PPs is the ability to listen attentively and provide feedback. In activities linked to listening and feedback, PPs sat back to back in pairs, one describing a simple image that they received from Alison, and the other trying to draw it on a piece of paper from the description. This enabled PPs to self-identify entrenched assumptions, and see how much we subconsciously rely on them and, practically, to appreciate the value of organizing feedback systematically. Feedback from PPs draws explicitly on the “I’ method, which is also used in Maastricht University’s Simulated Patient encounters. This method allows the PP to structure constructive feedback from their own perspective by drawing on three aspects: identifying the issue exactly, vocalizing how it made them feel, and suggesting an alternative response. One example that arose was “when a doctor addresses me by my first name without asking my permission, I feel disrespected and diminished, and I would prefer to be addressed more formally as Mrs…”. Unsurprisingly, PPs found consistent I-feedback very challenging, especially when the topic touched on a sensitive subject or ‘raw nerve’!
Over the course of these sessions and through Alison’s clever use of play – from breathing to listening, clapping, drawing, dancing and mime – participants reflected on and experimented with authentic and meaningful communication as a process of connecting thoughts, emotions, and physical form to make meaning. In one session, a series of seemingly-innocuous clapping exercises soon morphed into something much deeper and darker, as participants struggled to hold onto their own rhythm when challenged by a more dominant force, each having to find their own transition process towards a harmonious ‘voice’ as part of the new ‘whole’. Alison’s way of letting participants play ‘silently’ and then encouraging them to find the words to explore what had taken place individually and collectively, takes learning to a different level. Through first eliciting and then discussing emerging feeling such as frustration, uncertainty, joy and hurt pride, a very diverse group of people were able to collectively explore abstract concepts such as ‘empathy’ in a profoundly transformative way.
The PPs have also played a fundamental role by working with SA Student and Staff Partners to draft their individual PP ‘avatars’. While their avatar’s life history draws predominantly on the PPs’ own life stories and experiences, the distinction between ‘avatar’ and ‘Patient Partner’ is very important. From an educational perspective, the PPs are ‘themselves’ during the design and feedback stage, but ‘play’ their avatars during the implementation activities, e.g. doing medical interviews. Naturally, PPs have the right to withhold information from their own life stories which they may not want to share. From a psychological perspective, the avatar provides an important buffer or ‘safety net’ for the PP, without undermining their authenticity.
To ensure authenticity, each avatar must be exhaustively explored to guarantee consistency and to identify appropriate potential case themes. To achieve this, an iterative process was followed, starting with the PP’s own draft avatar being probed by Staff Partners who were able to offer feedback from their different disciplinary perspectives. The next step called for ‘multiple lenses’ to look at the avatars from different ‘angles’. The timing of this phase coincided perfectly with the arrival of the international mobility students in Cape Town and provided them with their first opportunity to contribute constructively to the project. During this engagement, the PPs rotated through interviews with a doctor (to probe medical history in more detail) and a social work student (to explore psychosocial themes). PPs also met in groups with the Finnish multimedia students, whose ‘lens’ was aimed at finding interesting themes or ‘angles’ for a promotional material.
The PPs are now on the cusp of entering the next phase of their development, which will entail intensive training sessions (involving Zakheni, staff and students) on moving in and out of character, and playing their avatars authentically, all the while being mindful that they will soon need to provide empathetic feedback! The first theme to be explored is that of ‘pain’. Each avatar will be assigned a case of ‘chest pain’ of different pathological origins, and over the next few weeks will have an opportunity to interview a real patient suffering from that specific complaint. This will enable the PP’s to participate in the construction of a curriculum case scenario that goes beyond medical descriptions of pain and will expose junior students to a more realistic learning experience on how different people feel and talk about pain.