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Cancer and Society in the 21st Century

Emily Ross

23rd June 2017

Cancer and Society team photo

In May my research team members and I were pleased to meet with Steph Wright from The Data Lab, who told us about the Cancer Innovation Challenge. My colleagues and I work on a Wellcome Trust funded project ‘Cancer and Society in the 21st Century’ –  a collaboration between the University of Edinburgh and University of Leeds. Our research uses social science theory and methods to explore how developments in cancer science are being experienced in healthcare settings, and how this might impact more widely on experiences of being a cancer patient. We will consider how understandings of cancer as a disease might be changing, and the impact of this. To explore these issues, we are conducting qualitative research with those personally affected by cancer, carers and family members, scientists, clinicians and members of the public.

To help us consider what it means to be a cancer patient today, we will work according to four themes. These have been chosen to reflect important aspects of experiences of being a cancer patient, an experience we call ‘cancer patienthood’.

The first theme will look at ‘stratified patienthood’. Stratification means assigning people into different groups according to particular characteristics. In this theme we will consider the potential for novel scientific techniques to offer more tailored treatments, which better fit individuals’ tumour types. We will look at how this might change people’s understandings of their cancer, and the formation of different patient groups around new categories of cancer. We will also look at whether and how people in different social groups (according to social class, age and gender) are able to access different trials and treatments.

The second theme, ‘pre- and post- patienthood’ will consider how the experience of being a cancer patient is being extended– both before diagnosis and following successful treatment. Here we will look at experiences of being monitored for cancer risk. We will also consider individuals’ experiences following cancer treatment, and at the ways in which feelings of being a patient may remain. The third theme, ‘experimental patienthood’ will look at people’s experiences of being part of clinical research, as patients become increasingly involved in clinical trials and other types of research. We will consider how this shapes the experience of cancer, with patients required to participate in new kinds of emotional and physical tasks (Kerr and Cunningham-Burley, 2015). We will look at the reasons why people do or do not want to participate in trials, and who is not able to participate in trials for various reasons.

The last theme, ‘public patienthood’ will look at how cancer and cancer research are discussed more widely.  For example, much information is now visible online, but may also be told through stories and events. We will look at the new groups of patients forming around public accounts of living with cancer or accessing cancer treatment. We will also consider public and patient involvement in research, and the hopes and expectations that are held by researchers and patients themselves. This theme will again also look at who is excluded from these activities.

To address all four themes, we must be aware of developments happening in cancer research and treatment.  Alongside developments in genomic and molecular research in laboratories, which it is hoped will positively impact on cancer diagnosis and patient care, advances in understandings of the patterning of cancer and access to treatments are occurring through the use of data science. This might be patient or health services data. The Data Lab works to enhance the way data is used to enable better outcomes for society. The Cancer Innovation Challenge in particular is developing innovative ways to record and use patient recorded outcome measures (PROMs) data, and will be working with cancer data sets to develop new ways to make sense of and manage these large stores of information. In the future, information concerning cancer is are set to expand and increase in complexity, as projects such as the Scottish Genomes Partnership and 100,000 genomes project in England begin to perform genome sequencing with an large numbers of individuals and their tumours. It is important that patients and the public are involved in discussions about how and why large sets of data like this are used. Whilst there might be support for the use of health data in research, studies have shown that the public see it as important that data be used for the benefit of the wider population, and that privacy and confidentiality are upheld (Aitken et al., 2016)

We were delighted to meet with Steph, and pleased to hear about the work being done as part of the Cancer Innovation Challenge, particularly to ensure that patient and public voices are represented in research funding and design. We will be sharing experiences of working with our own patient panel, and look forward to further discussions about the Cancer Innovation Challenge in the future.

 

 

Aitken, M., de St. Jorre, J., Pagliari, C., Jepson, R. & Cunningham-Burley, S. (2016) 'Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies', BMC Medical Ethics 17 (1): 73.

Kerr, A. & Cunningham-Burley, S. (2015) 'Embodied innovation and regulation of medical technoscience: transformations in cancer patienthood', Law, Innovation and Technology 7 (2): 187-205.

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