Two staff members of the Patient Partner Project, Dr Rachel Weiss (project manager) and Dr Natashia Muna, were recently interviewed by Kate-Lyn Moore of the University of Cape Town Newsroom. The abridged interview posted on the UCT website, was a wonderful opportunity to introduce the project to the UCT community, and discussions are already underway for follow-up interviews that will showcase the work of the project and highlight the value of international collaboration.
Becoming partners in care
Dr Rachel Weiss, together with a team of European colleagues and colleagues from Health and Rehabilitation, Disability Studies, African Languages and the Intervention Program at the University of Cape Town, are forging a new path in medical teaching with the Patient Partner Programme.
The Patient Partner Programme has been funded by the Erasmus + programme of the European Union as part of the Caring Society 3.0 (CASO) consortium. The CASO consortium is a working partnership between two other South African universities, the University of the Western Cape and the Cape Peninsular University of Technology, and three European universities of Applied Sciences; Avans University of Applied Sciences in the Netherlands, Karel de Grote University in Belgium and Lahti University of Applied Sciences in Finland.
The programme attempts to respond to the specific needs and challenges of our South African context by addressing gaps in the current health sciences communication curricula.
Medical students, for example, interact minimally with patients for the first few years of study. By the time they can engage actively with patients, there are few opportunities for observation and feedback from staff members. More importantly, there are no formalised opportunities for constructive feedback from patients. Students may not be fully equipped to communicate effectively with patients from diverse contexts.
Weiss, who heads up the Clinical Skills Centre and has a specific interest in patient-centred communication, believes that these gaps are especially problematic since many South African patients feel disempowered in the health care setting.
“Because of the large student numbers, patients are often seen by multiple students, who need to ‘practise’ their communication and examination skills on patients, with the patient’s consent of course. However, you have to understand ‘consent’ in the context of the history of our country and the socio-economic disparity still impacting on our health care system,” Weiss continues.
“The students need to learn”
In a 2012 study, Weiss and her colleagues found that some patients were being examined up to five times a day by groups of 3-4 students, in between undergoing diagnostic procedures, treatment, having lunch, receiving visitors and resting. Even though ‘consent’ was obtained in each case, the toll on patients was undeniable.
This explained why many patients would disappear, or feign sleep when the students arrived for scheduled interviews or examinations. Most, however, seemed to endure the situation stoically, and believed that they really had little choice.
“In those cases, when we had followed up by asking patients, ‘If you are sick or sore, why don’t you just say no?’ the patients all said, ‘But the students must learn.’”
It is a catch-22 situation. Students need patient interaction to learn in a contextually-appropriate way, but junior students can’t engage with sick patients before they have had the necessary training.
“In designing curricula and pedagogies, we have to recognise that in this country we have issues around human rights, around injustices, around power, that we need to consider,” she explained.
It is for this reason that Weiss is a long-time advocate of a simulated patient programme, albeit one with a different focus.
Unlike programmes prevalent in the United States (where a simulated patient is trained to take on a purposefully-designed ‘personality’ and enact a given medical and social history relevant to a case), Weiss’s Patient Partner Programme is focussed on the authentic representation of patients in the fullness of their personal, social and economic contexts.
“For us the authenticity of someone’s real life is most important, because we want to tackle contextual issues that manifest in the healthcare encounter around power, privilege, gender”, explains Weiss. Even though some simulation-related skills may be needed, patient partners will be trained mostly on listening skills and providing constructive feedback from a patient perspective.
This means that if a patient partner is a 35-year-old mother of three children, living in Khayelitsha and dependent financially on a social grant, she will bring this reality into the teaching cases they develop, even though she may ‘present’ with a cough one day, or dizziness the next time.
Patient partners are “experts by experience”, says Weiss. This project emphasises the value that both the patient and the healthcare practitioner bring into the dynamic.
“Asymmetry in interpersonal relations are a reality; we would be completely naive if we thought we can somehow ‘equalise’ the power between a patient (who may have limited education) and the medical specialist (who is most likely from a different socio-economic, cultural or even language background), especially since the patient is dependent on receiving help.”
“However, we can train both parties to have respect for the experience the other person brings. Specialist medical knowledge and skills are essential, but only have value if the patient participates consistently in the diagnostic and treatment process,” Weiss explains. This may not be the case when patients experience ongoing side effects from treatment, or risk losing their jobs because of frequent clinic visits. In pursuing a favourable clinical outcome, the patient’s lived perspective is therefore as valuable as the doctor’s professional perspective.
Eliciting and understanding a patient’s perspective in the context of diversity requires skill; it requires training medical students to listen, to recognise culture-specific cues and to recognise when patients challenge a ‘medical’ view or management that they would not follow, were it to be implemented anyway.
Within the Patient Partner Programme, patient partners will help students to practice their skills, provide constructive feedback and participate in the design of communication curricula and learning resources.
The project opens opportunities for significant student participation.
“We view this small group of participating second year students, as well as two fifth year medical students, as ‘student partners’, to see how we can involve students in curriculum development and dissemination,” says Weiss.
Weiss and Muna are also co-supervising a master’s student who will be looking at understanding the experience of the patient partners.
“It must be a beneficial, uplifting experience for all the partners that work with us. It has to be sustainable from their perspective as well as ours,” says Muna.
As a result of the international consortium partnership, student partners will also participate in short internationalisation visits and work together with a multidisciplinary team of students from Europe.
“I think it would be really interesting to see our students contributing to the conversation on decoloniality, having been exposed to local challenges as well as other curricula, other contexts and other students,” says Weiss.
A new career
Weiss and Muna will be recruiting and training ten patient partners with the help of their colleagues at UCT and NGO partner, Zakheni Arts Therapy Foundation.
“It’s a great boost to know that we actually have someone on board who is already involved in healing and the arts, because there are no clear footprints for us to walk on,” says Weiss.
Ideally, the patient partners will be representative of the population students engage with in the hospitals. For this reason, programmes such as this present new opportunities for employment. Many sufferers of chronic illness are unemployed, but would be ideal candidates for a project like this, and would be paid for their time and contribution.
The patient partners will work from a simulation ward in Groote Schuur hospital. Rooms will be equipped with recording equipment, so students can learn from reviewing their interactions with these patients.
This opens possibilities for new types of learning activities, for example, tasking small groups with identifying examples of non-verbal cultural communication, or with understanding why certain behaviour may be perceived as rude or insensitive.
Through the project, and by setting up the necessary training processes to equip the patient and student partners, Weiss and Muna hope to produce at least the building blocks of future communication curricula for health sciences students, both in the MBChB and Health and Rehabilitation programmes.
“All of us are actually learners in this project. All of us are designers and all of us are developers. It is actually an amazing way to think about curriculum development,” says Weiss.
Story Kate-Lyn Moore. Photos Robyn Walker.