27 July 2020
People dressed for carnival and karate, cooking and gardening – just some of the people that kept Rina Dave alive. Each portrait shows a person involved in Rina’s care, dressed for or posed with the thing they loved: the activities, the people, the objects that in turn made them feel alive. During 2014 Rina was being treated with stage 4 breast cancer at Charing Cross Hospital. She wanted to pay tribute to the healthcare staff, researchers and volunteers who kept her going. With the help of CRUK research nurse, Kelly Gleason, Rina set up a makeshift photographic studio in the hospital and the pictures were exhibited in late 2014. Rina passed away peacefully in 2015. The photographic project went into storage before being shown again at a science festival in 2019, alongside an invitation to visitors to share what makes them feel alive.
Credit: Dan Weill, Imperial College London. Image: The Feedback Wall in action
The question that served as the premise of Rina’s project – ‘what makes you feel alive?’ – prompted more than 600 different answers. I was struck by the variety of things that people said made life matter – people, pastimes, passions, answers that varied from the abstract to the specific and the flippant. There were moments of contemplation and concentration, lots of discussion, much laughter and some tears. The responses interested me because this feedback wall –constructed from a clothes rail, coloured string, and many handwritten postal tags – is public and anonymous, and visitors often took time to read and discuss the contributions of others before adding their own. The individual responses reflected many situated and distributed relations – with people and things – that give us a sense of who we are in relation to others.
Rina’s project, and the feedback wall that it inspired connects with some of the work we have been doing in this same breast cancer service. Her project reminded me of a patient I met during our fieldwork, who was also being treated for advanced breast cancer. Her treatment and pain management was adapted to allow her to visit an annual comic book convention with her son, the highlight of her year. Her medical team knew this was a priority and changed her appointments and medication to help her attend the convention. Small adaptations can make a world of difference to patients, and provoked questions about how, when, and why care was tailored, adapted, or adjusted according to people’s preferences, differences and similarities.
In our work on personalisation we look at how ‘liking’ and ‘likeness’ combine in the address to ‘people like you’ – expressions of preference can provide the grounds for judging people to be alike (similar to each other) or run in parallel. NHS England’s approach to personalisation has been to separate resources and policies for ‘medicine’ and ‘care’. The former matches people according to increasingly predictive and precise categories of molecular and other biological traits. The latter enables people’s preferences to shape their use of health services. While personalised medicine promises ‘the right treatment to the right person at the right time’, personalised care involves conversations between care providers and patients about ‘what matters to you?’ and not ‘what’s the matter with you?’ In NHS oncology services clinical matters tend to take priority and care pathways were largely shaped by similarities between patients based on disease categories and related treatment and response. Patients and staff also registered how preferences could be acknowledged, ranging from IT developments that improved information sharing between patients and staff to nurse-led chemotherapy that involved greater continuity of care.
An important tool used to gather information about patient priorities and preferences is the Holistic Needs Assessment (HNA), which nursing staff complete with patients to develop their care plans. Standardised assessments have been championed by campaign groups and charities as an important mechanism to make healthcare services more ‘personalised.’ They provide opportunities for asking patients about the things that matter to them. In this breast cancer service HNAs are completed at the beginning and at the end of treatment, and nurse specialists review issues and concerns with patients. HNAs can help to highlight practical concerns that are hard to discuss in time-pressured appointments with surgeons or oncologists, including specific spiritual, financial, psychological and mental health needs, as well as worries about the effect of cancer treatment on personal relationships. They are used as a communication device by nursing staff, much like the feedback wall we developed, to spark conversations about what care could look like for this individual. But HNAs are also tools for broader service developments and delivery – they are used to produce metrics of care quality which can be used to audit and rate hospital trusts.
HNA data is being gradually integrated into wider data management systems that the hospital uses to track patients and patient groups. Such metrics may, in the future, be used to sort patients in terms of the characteristics they share, combining the biological categorisation of cancers with measures of emotional wellbeing, financial security, or social network features. In the long run, patients will continue to be asked about the things that matter most to them. But over time who they are taken to be will be shaped by the ways in which the service quantifies, aggregates and re-assembles them in fluid groups or categories.
How large oncology services incorporate, code, operationalise and standardise ‘holistic needs’ of patients in the future will depend on how they interpret patient-centered care delivered by healthcare staff through evolving computational tools for analysing patient data. For now, who asks what makes you feel alive and how the answer is implemented depends on the prior emphasis given to different orders of ‘like’, that is, preference and similarity. Care pathways prioritise likeness based on sub-typing of disease categories, treatment and treatment response, while tools that address preferences about care operate in parallel, according to various social, emotional, psychological, financial categories. Platforms for ‘personalised medicine’ may promise to deliver the right treatment to the right person at the right time but remain agnostic about whether or not that person enjoys a good standard of living, or whether they still enjoy the things that made them feel alive.
Acknowledgements: thank you to Kelly Gleason for introducing me to Rina’s project and allowing me to be involved in the CRUK stand at the Great Exhibition Road Festival 2019. Read about her work with Rina here. I also want to acknowledge our collaborative work in breast cancer medicine and healthcare, led by Sophie Day, who made many useful comments and suggestions towards the writing of this piece. We are very grateful to the staff and patients who spoke to us during our research.