Transforming Care after (cancer) Treatment in Scotland

Emily Ross

On the 24th February 2016, I attended the Transforming Care After Treatment (TCAT) conference in Glasgow. TCAT is a programme of work in Scotland supported by the Scottish Government, NHS Scotland and Macmillan Cancer Support, comprised of local projects across the country. TCAT’s work aims to improve current systems of cancer service provision, through recognition that care should not stop after diagnosis and treatment. Many patients require ongoing support, for example in terms of emotional needs, practical help, and advice on coping with long-term after effects of cancer treatment.

The conference opened with a discussion of the enthusiasm that has been shown for TCAT by practitioners thus far, and the need to sustain this momentum to turn the ambitions and hopes of those involved with TCAT into practice. It is hoped this will improve patient experience, which in the current system of a ‘one-size-fits-all’ approach, has the potential to leave patients feeling isolated and abandoned. It was also noted that current practice is not sustainable due to the changing landscape of cancer experience, in terms of a growing number of people living with cancer, and increasing constraints on the National Health Service. The audience also heard from Bill Martin, a representative from TCAT’s cancer experience panel (CEP). Bill described how the CEP contribute to TCAT by monitoring patient, carer and service user involvement in the programme, and sharing their expertise in care after cancer treatment.

Following introductory presentations, I attended a session focusing on the role of the third sector (comprising not-for-profit and non-governmental organisations such as charities) in supporting people following the completion of their cancer treatment. We heard from Lucy Whiteman, from CLAN cancer support  and also from Angela Harris, from Breast Cancer Care. Both described the services offered by their organisations to individuals following cancer treatment – for example, breast cancer care offer a ‘Moving Forward’ four week course to those who have experienced breast cancer. This provides women with space to discuss coping strategies, healthy living, and body image. Angela presented an image to represent how women may feel during their ‘recovery’ from breast cancer, and based on my reading, I thought suitably reflected some women’s experiences of uncertainty and fear of reoccurrence following treatment for breast cancer:

arrow

Both speakers emphasised that the emotional impacts of cancer do not stop following treatment, and care should therefore be ongoing.

I was interested that despite focussing on post-treatment wellbeing, neither of the speakers used the terms ‘survivor’ or ‘survivorship’. Though used in Macmillan’s materials and particularly associated with the ‘breast cancerisation’ of post-treatment experience, this language was notably absent from the conference. This may be to do with resistance from those affected by cancer to using this term. For example, one sociological study from the US found that “the survivor discourse alienated women who struggled with the threat of recurrence, who felt their cancer experience was not severe enough to merit this title, or who desired a private disease experience”. One delegate at the conference told me that this language had the potential to ‘aggravate’ those affected by cancer. I reflected on the work of Kirsten Bell, who has written about how ‘survivorship’ is tied in with conceptualisations of cancer as a ‘war’ or ‘battle’, and the implications of this language of those who cannot, or do not want to, fight the disease. Though many do identify as being as ‘survivor’ of cancer, the rejection of the label by some exemplifies the need for TCAT’s vision to personalise post-treatment care in Scotland, and ensure service provision flexibly meets individual needs.

Following a presentation to the audience from Dr Aileen Keel, who described moves towards stratified approaches to cancer follow-up, in terms of the level of contact individuals would like with health services post-treatment, I attended another session which considered the use of online services to support self-management. This session featured a talk from Kevin Hutchison, who is helping to develop a service to allow people to select and save online information, creating a set of resources tailored to the individual, and store this in their own personal online profile. They will also be able to more easily access information about local services and support using the tool, called ‘info for me’. This is part of the TCAT initiative to empower patients, and contribute to a more personalised care after treatment. We also heard from Alliance Scotland, an organisation that supports those who are disabled or living with long term conditions. They presented the results from a survey they had conducted regarding the role of social media in self-management of long term conditions. The survey found that engagement with social media and online resources allowed easy access to peer support, reduced feelings of isolation and increased confidence in accessing health services. These findings echo some sociological literature regarding online ‘illness communities’, which have found that creating relationships with others, and feeling supported, are some of the benefits voiced by those using the internet in this way. This is particularly relevant to the strand of our project which considers ‘public patienthood’. Here we will explore online accounts of cancer, cancer care and cancer research including individuals’ experiences of research participation, and the role of online communities.

The conference galvanised those present, and gave me a renewed appreciation of the hurdles faced by those affected by cancer throughout the cancer trajectory. The illness has impacts beyond the physical, and an appreciation that these will vary between individuals and over time is beginning to shape cancer service provision in Scotland. The concept of ‘stratified’ post-treatment care, which is also being discussed in the realm of biomarker surveillance, and of course personalised screening pre-disease, is of interest to our Wellcome Trust project. It seems the notion of being a patient, and the extension of patienthood into pre- and post- disease, is becoming constantly reconfigured in the post-genomic era, not only in terms of clinical treatments, but also in terms of holistic care and support.

The Scottish Cancer Conference 2015

Emily Ross

Originally posted on February 15, 2016 on the University of Leeds Centre for Health, Technologies and Social Practice blog.

In November 2015, my colleague Emma Doyle and I attended the Scottish Cancer Conference, hosted by Cancer Research UK. This one day event featured speakers from across the cancer community, and included presentations on cancer prevention, research participation and treatment.

Three issues of relevance to our Wellcome Trust project stood out for us following our attendance at this event:

Continued emphasis on ‘lifestyle factors’ as causes of cancer

Several of the presenters at this conference drew on the concept of ‘lifestyle factors’ (often referring to smoking, alcohol consumption, diet and exercise). In relation to this, a statistic often cited during the day was that ‘4 in 10 cancers can be prevented’. These discussions focused on successes in the realm of smoking cessation, and the need to translate this to alcohol consumption in Scotland (in a talk from Shona Robison MSP), and the role of primary care in this regard (discussed by Professor David Weller). These behaviours were framed during the day in terms of individual behaviour, and the status of this as amenable to prevention. Focus was given to ‘hard to reach groups’, and the successes achieved through targeted prevention activities.

However, though socioeconomic status was invoked as connected to patterns of these ‘preventable’ causes of cancer, such discussions often focused on the responsibility of the individual to change these behaviours, with support and guidance from health services. As we have discussed in a previous blog post, these discourses have the potential to imply blame for not avoiding particular cancer risks, or for not seeking support to do this, although that was not the tone of the presentations or discussions.

Much sociological work has pointed to wider structural factors shaping health and illness in the UK, which were not expanded upon during the conference. Since the 1980s sociologists have described environmental and psychosocial barriers to the adoption of ‘healthy behaviours’ (Graham, 1987). More recent work has shown that embodied dispositions may shape the extent to which individuals are able to access and engage with health promotion messages (Dumas et al., 2014). From the perspective of our Wellcome Trust project, Emma and I were interested in the emphasis on ‘lifestyle’ causes at the conference, though cancer research increasingly shows the complex factors contributing to the disease, including interactions between multiple genes, environmental risk factors and gene expression (Knox, 2010). Further, we were surprised that reference to wider (health) inequality in Scotland was rarely made.

The impact of genomics

Related to the emphasis on lifestyle factors as causes of cancer, we noted that the conference did not feature more discussion of the potential for genomic techniques and technologies to re-shape current conceptualisations of cancer, and to change the landscape of cancer screening, diagnosis and treatment. In two presentations, speakers drew on genomics – Professor David Weller discussed the possibilities for genomics to transform screening programmes (and importantly, the need to develop appropriate patient information and counselling alongside this), and Professor David Cameron’s talk pointed to personalised medicine as providing new opportunities for patients to participate in research.

The relative absence of these discussions from the conference may reflect how the impact of genomics is experienced in day-to-day clinical practice. Though some clinical trials such as the Matrix trial (lung cancer) draw on genomics and personalised medicine, by using the genetic make-up of a patient’s tumour to guide their treatment, the dissemination of techniques drawn from genomics into daily practice is not yet widespread. Recent news articles have pointed to the complexity of cancer, the ‘potholes’ genomic techniques have faced (including the difficulties in storing the huge amounts of data produced through genome sequencing), and described cancer genomics research in terms of a ‘slow revolution’. It seems that as genomic techniques generate increased knowledge of cancer and its progression, they also unlock more complexity for scientists working to understand and develop treatments for cancer.

Patient involvement in research

Professor David Cameron’s talk presented clinical research as essential to NHS practice, in terms of improving service provision (including cost effectiveness), and to provide the best treatments for patients. He refuted common objections to clinical research within the NHS, which include the potential exploitation of patients, and the time and financial pressures research adds to already constrained services. Professor Cameron also described that research is becoming more difficult within the NHS, due to increasing levels of regulation.

One of the most striking aspects of Professor Cameron’s talk, which framed clinical research as a duty of both academics and clinicians, was the feedback from patients and the public in the Q&A session. Two women who had experienced breast cancer commented on their positive experiences of participation in research trials, with one describing that data protection could hinder the progression of trials, in the eyes of both clinicians and participants. She described her stance on this, and past participation in research, in altruistic terms – wanting to prevent others from having to go through as much treatment as she did. Another audience member explained that amongst patients he had talked to, there was a consensus that they wanted their data to be used for worthwhile research.

Social science research has documented that patients consent to take part in genetic (cancer) research for a myriad of reasons. The notion of providing a ‘gift’ to society has been used by research institutions to establish and maintain public trust, and encourage participation in biological research (Tutton, 2004), and like those described above, explanations concerning altruism have been given by participants themselves (Pellegrini et al., 2014). However, other work has documented that patients may participate in clinical research for some personal benefit, including access to potentially curative treatments and receiving additional care from research nurses or study coordinators (Holmberg et al., 2015). This is relevant to recent ethical debates which advance the notion of a ‘right’ to participate in clinical research (Chan et al., 2011) notwithstanding the possibility of the ‘therapeutic misconception’. This positioning of patients as active participants in research, and blurring of boundaries between ‘patient’ and ‘research participant’, as research becomes increasingly embedded into care and treatment, is of interest to our Wellcome Trust project. We will explore motivations for participation in contemporary cancer research, patient views on providing samples of tissue for genomics research, and the potential for patient groups to shape research agendas.

Prioritising patients

Overall, the cancer conference provided much to think about for our work, and ended with a rousing talk given by Alan Clayton. He described his own, and his family’s, experiences of living with cancer. This was a great way to end the conference, and reminded the audience that the experiences of patients must be placed at the heart of cancer care, and that we should do the same as part of our research.

CHAN, S., ZEE, Y.-K., JAYSON, G. & HARRIS, J. 2011. ‘Risky’ research and participants’ interests: the ethics of phase 2C clinical trials. Clinical Ethics, 6, 91-96.

DUMAS, A., ROBITAILLE, J. & JETTE, S. L. 2014. Lifestyle as a choice of necessity: Young women, health and obesity. Social Theory and Health, 12, 138-158.

GRAHAM, H. 1987. Women’s smoking and family health. Social Science & Medicine, 25, 47-56.

HOLMBERG, C., WHITEHOUSE, K., DALY, M. & MCCASKILL‐STEVENS, W. 2015. Gaining control over breast cancer risk: Transforming vulnerability, uncertainty, and the future through clinical trial participation–a qualitative study. Sociology of health & illness.

KNOX, S. S. 2010. From ‘omics’ to complex disease: a systems biology approach to gene-environment interactions in cancer. Cancer Cell International, 10, 11-11.

PELLEGRINI, I., CHABANNON, C., MANCINI, J., VIRET, F., VEY, N. & JULIAN-REYNIER, C. 2014. Contributing to research via biobanks: what it means to cancer patients. Health Expectations, 17, 523-533.

Cancer and Metaphors: reflecting on how we talk about cancer

Choon Key Chekar

Originally posted on February 15, 2016 on the University of Leeds Centre for Health, Technologies and Social Practice blog.

road

In a recent public lecture in Lancaster, Professor Elena Semino (Head of Linguistics & English Language at Lancaster University) shared some fascinating findings from her work on cancer and metaphors. Drawing on corpus analysis of data from interviews and from a public online forum on cancer patients, Professor Semino explored how people with cancer use metaphors. In order to critically reflect on the culture where war metaphors dominate, Professor Semino has worked with health professionals and cancer charities to examine the impact of metaphors in health communication. This research is from a larger ESRC funded Metaphors in end-of-life care project.

In her talk, Professor Semino discussed two distinctive ways in which cancer was ‘talked about’ by patients and health professionals. One was the comparison/contrast between metaphors related to journey and warfares and the other topic was uses of humour in talking about cancer experiences. Although some patients and NHS prefer journey metaphors (cancer as a ’hard road’ and the process of diagnosis and treatment as a journey that one goes through) to warfare metaphors (such as fighting/beating cancer, a battle with cancer), Professor Semino argues that each metaphor might have different benefits for patients. Even though there has been strong criticism that ‘war’ metaphors can be harmful, metaphors are useful for patients and family members as a way of framing their experiences. For some patients in particular, depending on the stage of their cancer, war metaphors can be empowering and give them a sense of identity and purpose (e.g. ‘not giving up’, ‘being a fighter’). And from cancer charities’ point of view, war metaphors undeniably work better than, for example, journey metaphors in terms of fundraising.

As a way of disseminating her research findings, Professor Semino has been working on a ‘metaphor menu’ that could give people with cancer more sensitive and appropriate languages to describe their experiences. Examples include cancer as ‘a fairground ride’ that is scary but will end eventually or cancer as an ‘unwelcome lodger’ who turns up at your house to live with you (without your permission) but will leave eventually and might come back later. She found that the online patient forum was also a platform for a number of patients to find and use humour (in spite of their hardship) to frame their experiences and to then be able to share these experiences with fellow patients.

Since this public event was well attended by health professionals and patients, carers, friends and family members of cancer patients, questions that arose following the talk were equally fascinating and moving. One audience member pointed out that not a single week passes without seeing the expression of ‘losing a battle with cancer’ in national papers. He asked “How can we change this culture?”. In response, Professor Semino suggested the following phrase – ‘S/he lived as well as and as long as s/he could’!

Professor Semino’s talk gives us the opportunity to think about the impact of portrayals of cancer in the media and everyday conversations as well as in the medical setting. We have come a long way from being unable to talk about the ‘C’ word to having a successful TV series devoted to a cancer patient. Yet we have still got a fair way to go in helping cancer patients go through their treatment without the burden of being stigmatised or being criticised for not winning the ‘battle’ with cancer.

Cancer and its prevention – exploring blame and responsibility

Emily Ross

Originally posted on August 7, 2015 on the University of Leeds Centre for Health, Technologies and Social Practice blog.

Whilst working on this project, it is important that the team keep up-to-date with developments in cancer research. A very helpful, and accessible, source of information is the Cancer Research UK (CRUK) science blog. Looking through the archives, I found a post addressing public reaction to a recent article on the relationship between ‘lifestyle’ factors and cancer (Childs, 2012). The post described that CRUK

“…sometimes hear[s] from some people with cancer…they feel the finger of blame is being pointed at them when they read or hear about the preventable causes of cancer in the media…Several people wrote about the media being “judgemental” and having a “moralistic streak” when talking about the preventable causes of disease. But most concerning, some cancer patients said that the coverage made them “feel guilty” about their disease…how should we go about telling people about the results of this work, without playing the “blame game”?”

The article goes on to highlight its efforts to “equip individuals with information” and “empower” to prevent cancer, whilst being careful not to imply blame. It also outlines the “moral duty” of CRUK to report research findings to the public, including those linking lifestyle factors and cancer.

This discussion resonates with existing research in the sociology of health and illness. It has been noted that health promotion strategies in European and American regions generally encourage individuals to keep themselves well, for example by engaging in regular exercise regimes, and following healthy diets. As Petersen and Lupton (1996: ix) describe, “individuals are expected to take responsibility for the care of their bodies and to limit their potential to harm others”. Petersen and Lupton attribute this in part to contemporary forms of governance over populations, which favour free-markets and individual autonomy (1996: xiii). However, as those responding to the CRUK article (above) point out, these messages carry with them a sense of expectation that individuals will avoid ‘risks’ to their health, and disapproval when they do not. This is particularly marked in the areas of obesity and smoking-related illnesses (Bell et al, 2011).

These judgements, however, often do not account for the circumstances in which these behaviours take place, or the fact that complex factors, both biological and environmental, interact to make some individuals more susceptible to poor health than others. As in the article quoted above, when researchers and authors describe certain behaviours as lifestyle choices, and write about preventable causes of cancer, they downplay the constraints imposed on individual choices by their wider social contexts.

A recent article by Bell and Ristovski-Slijepcevic (2015), describes how these notions nevertheless continue to be disseminated amongst medical professionals. They noted at the cancer prevention conferences they attended that talks often focused on lifestyle factors, with cancer presented as a matter of choice: for patients and medical professionals alike. Bell and Ristovski-Slijepcevic observed that these presentations were often not based on conclusive evidence, but rife with moral and ideological claims.

Although cancer is often described as preventable, today it is also increasingly understood in terms of the complexities of genetic mutation and hereditary risk. It is important to consider during this project how discourses of guilt, blame and responsibility might be experienced by those with a cancer attributed to their genetic make-up, and thus seemingly ‘unpreventable’. Existing work already explores these issues. Hallowell’s (1999; 2004) research has described women’s accounts of genetic counselling, testing or surgery for hereditary breast and ovarian cancer (HBOC). She notes that though genetic risk is constructed as ‘involuntary’ by biomedical discourses, this does not seem to absolve those with ‘risky’ genes of responsibility for their health (1999: 599). In the case of HBOC, this includes the expectation that women will endeavor to prevent an ‘at-risk’ status from manifesting into a cancer diagnosis. One participant in Hallowell’s research described that undergoing testing was a way of “doing everything I can to give myself the best chance” (Hallowell, 2004: 558).

Similarly, Hesse-Biber (2014) argues that her participants, following identification of a BRCA mutation, were expected by medical professionals to accord with one of the courses of action they recommended. This course of action usually entailed surveillance or surgery to “eliminate” their chance of developing cancer. Blame and judgement, then, also have the potential to figure in patients’ experiences of hereditary cancer. This could be the case if a patient’s decision-making does not accord with medical advice. Here, the patient does not conform to the vision of the ‘responsible-genetic subject’ (Novas and Rose, 2000: 505), who gains as much knowledge about their condition as possible and applies this to oneself, aiming to optimise health.

Such feelings may be intensified when responsibilities to others are also introduced. The majority of women in Hallowell’s (2004) work, who had experienced cancer in the past, described that their main reason for undergoing mutation testing was to “generate information that could be used by other family members” (2004: 558). This was also the main motivator for men being tested for their BRCA mutation status (Hallowell et al., 2006). With only a small risk (6%) of developing breast cancer themselves, the men Hallowell et al interviewed all claimed that they had undergone testing to determine their carrier status for their children’s sake, with one describing this as a “duty” (2006: 975). Some men in her study explicitly raised feelings of blame and guilt in their accounts, should they be identified as a carrier, thus putting their child at risk.

Hesse-Biber’s (2014) work also describes a notion of participants ‘owing it’ to relatives to get tested. This could refer to those who had died, whereby her participants wanted to take advantage of modern tests and preventative surgeries, unavailable to previous generations. Some women in Hesse-Biber’s research purposefully memorialised their female relatives through the genetic testing process, for example by scheduling a test on their mother’s birthday.

Though a diagnosis of cancer attributable to an inherited genetic mutation has the potential to be perceived as inevitable, and thus out of an individual’s control, it is clear that responsibility, guilt and blame may nevertheless figure in patients’ experiences, in multiple ways. According to Hallowell (1999), this can shape and even constrain decisions about whether or not to undergo testing and/or treatment.

To date, much genetic cancer research and clinical application focuses on testing individuals and their relatives for specific mutations, which entail a risk of developing cancer. Today, findings from biomarker research have extended testing to other signs of risk. Some biomarkers may be indicative of cancer, and can be easily collected and tested (for example in blood or urine).

In thinking about the best way to present and provide these emerging forms of testing, we need to consider forms of responsibility and feelings of guilt and blame, but also hope and optimism, that they might elicit in people offered the tests and their families. We also need to consider how other members of the public view the tests, and the people who take them.

It is also essential to explore people’s understandings of the interplay between genetic and so-called ‘lifestyle’ factors as influencing cancer, and how guilt, blame and responsibility may be attenuated or reinforced through cancer prevention strategies. We will be tackling these concerns in our Wellcome Trust funded research on ‘Transformations and Translations in Cancer Patienthood’.

References

Bell, K. & Ristovski-Slijepcevic, S. (2015) Communicating “Evidence”: Lifestyle, Cancer, and the Promise of a Disease-free Future. Medical Anthropology Quarterly, n/a–n/a.

Childs, O. 2012. Lifestyle and cancer: against the blame game. Cancer Research UK Science Blog [Online]. Available from: http://scienceblog.cancerresearchuk.org/2012/04/11/lifestyle-and-cancer-against-the-blame-game/ [Accessed 29th June 2015].

Hallowell, N. (1999) Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5), pp. 597-621.

Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C. & Watson, M. (2006) Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28(7), pp. 969–988.

Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A. & Watson, M. (2004) Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59(3), pp. 553 – 565.

Hesse-Biber, S. N. (2014) Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer, Ann Arbor, University of Michigan Press.

Novas, C. & Rose, N. (2000) Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), pp. 485-513.

Humanities and the social sciences – ‘bridging the gap’ between medical research and its application

Emily Ross

Originally posted on July 13, 2015 on the University of Leeds Centre for Health, Technologies and Social Practice blog.

DNA-coin

DNA Coin by Anders Sandberg

On the 7th July 2015, a colleague and I attended the Wellcome Trust Humanities and Social Science Early Career Day. This event brought together those working on Wellcome Trust funded projects, with the aim of developing the support and opportunities offered to its early career scholars. Those in attendance included PhD students, Research Assistants and Research Fellows involved with a diverse range of projects. Representatives from the Wellcome Trust outlined the many schemes and sources of funding available to its scholars in Humanities and Social Sciences. These encourage involvement in public engagement work, or in policy formation. The event gave us some inspiring ideas for our work on cancer patienthood in the post-genomic era. It also underscored the importance of the humanities and social sciences to the charity’s mission.

The day started with a presentation from Dan O’Connor, Head of Humanities and Social Sciences at the Wellcome Trust. He shared an anecdote from a recent visit to the World Health Organisation in Geneva. Witnessing a discussion of the Ebola epidemic in West Africa, and the search for a treatment, Dan O’Connor related an incident whereby two eminent clinicians described ‘gold standard’ randomised controlled trials (RCTs) as the only means by which an effective treatment could be developed. RCTs are often considered to be the most rigorous method of determining the effects of a treatment. They involve the random allocation of individuals to a new treatment, or the ‘standard package of care’, with both patients and researchers unaware of which group has received which intervention.

A representative from Médecins Sans Frontières, however, working with communities affected by the virus, exasperatedly described how removed the concept of the ‘gold standard’ RCT was from the reality of what was happening to people “on the ground”. Indeed, the conditions within which the epidemic was situated have been widely reported by the media – a ‘standard package of care’ entailed healthcare professionals who were overworked and had received insufficient training, as well as poor medical equipment and facilities. As well as poverty, some culturally specific practices within these regions would also challenge attempts to conduct the RCTs heralded by some clinical researchers, as well as other efforts to tackle the virus. Anthropologists in the region have made these explicit, thanks to their understanding of traditional beliefs and practices. For example, longstanding rituals enacted by these communities following a death, including close contact with and preparation of the body, have been linked to the fast spread of the disease in these areas (Fassassi, 2014). A distrust of healthcare workers, either due to an understanding of hospitalisation as causing sickness, or due to anxieties that overseas volunteers would cause them harm (which some scholars associate with the history of colonialism in Africa), has also shaped the treatment provided to communities (see also Yahya, 2007). These potential barriers to Ebola prevention and treatment can only be recognised through attention to the socio-cultural milieus in which the virus occurs. Understanding these, and thus working with traditional beliefs and practices, for example by encouraging the adaptation of burial rituals to reduce physical contact with the deceased (Fassassi, 2014), demonstrates the powerful role that a perspective from the humanities and social sciences can play in disease prevention.

Dan O’Connor thus emphasised the importance of the humanities and social sciences in ‘bridging the gap’ between clinical research, with its focus on the physiology of the body and the molecular effects of illness and treatments, and the social and historical contexts in which these operate. As we can see from the example of Ebola, whilst ground-breaking biomedical research is constantly increasing our understanding of illness, and moving towards better prevention, more effective treatments and cures, it is important to acknowledge not only the biological mechanisms of diseases, but the people and relationships in which they are located.

This forms a foundation for our research on the Wellcome Trust project ‘Translations and Transformations in Patienthood: Cancer in the Post-genomic Era’. The project will explicitly consider how the experience of illness, availability of treatments and engagement with healthcare, must all be examined within their wider context. For example, it is only through exploring experiences of stigma and blame associated with lung cancer in the UK, that can we understand why some individuals may attempt to hide this disease from others, or delay seeking medical help (Chapple et al., 2004). In terms of hereditary cancer risk, family histories and individuals’ concerns regarding the potential disruption to family dynamics must be taken into account when considering decisions to accept or decline genetic tests for BRCA mutations (Hesse-Biber, 2014). In addition, our research will consider whether and how cancer is experienced differently among those from varying socioeconomic backgrounds, and the role of patient groups in defining and supporting cancer research.

Recognising how cancer is socially shaped, both in terms of patient experience and clinical efforts to tackle the disease, is an important aspect of this project. It is anticipated that through our work, assumptions regarding what it means to be a patient, and indeed the very notion of ‘patienthood’ will be challenged, inequalities exposed, and that barriers to seeking testing and treatment will be better understood. It is hoped this will contribute to improved care for patients and their families, including those designated as ‘at-risk’ through the diverse interventions propelled by genomics.

Chapple, A., Ziebland, S. & McPherson, A. (2004) Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. British Medical Journal, 328(7454), pp. 83-85.

Fassassi, A. 2014. How anthropologists help medics fight Ebola in Guinea. Sci Dev Net [Online]. Available from: http://www.scidev.net/global/cooperation/feature/anthropologists-medics-ebola-guinea.html [Accessed 8th July 2015].

Hesse-Biber, S. N. (2014) Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer, Ann Arbor, University of Michigan Press.

Yahya, M. (2007) Polio vaccines—“no thank you!” barriers to polio eradication in Northern Nigeria. African Affairs, 106(423), pp. 185-204.

Further reading

The Lancet: ethics of randomised controlled trials in context of Ebola

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61734-7/fulltext?rss%3Dyes10

Guardian: poverty as fuelling the Ebola epidemic

http://www.theguardian.com/global-development/poverty-matters/2014/aug/13/ebola-epidemic-poor-facilities-distrust-healthcare11