Life with cancer 2017

poster of the eventThe Leeds project team Julia and Choon Key attended the Life with Cancer 2017 event on 16 November 2017 in sunny Harrogate. Hosted by Yorkshire Cancer Research, this one day event included presentations on lifestyle and cancer, managing side effects, coping with cancer, and getting involved in clinical trials, featuring speakers from across the cancer community. This event also included practical sessions such as Pilates and mindfulness and one information session providing financial and legal advice. It was great to see that one session was especially designed for carers. Over 32 exhibitors attended this event to provide cancer patients and their family members with information and support.

image of Coping with cancer session
Coping with cancer session

Being able to speak about the Wellcome project to a number of patients and family members, as well as people from various cancer charities, throughout the day was particularly rewarding. Julia and Choon Key also managed to identify several people with direct experience of genomic medicine so it was a very productive day in recruiting research participants.

image of Our research fellow Julia in action: networking with Flat Fiends UK
Our research fellow Julia in action: networking with Flat Friends UK

One session that both Julia and Choon Key were particularly keen to attend themselves was on getting involved in clinical trials. This session consisted of four presentations from four different perspectives. Julia Brown’s informative presentation about what a clinical trial is was followed by Debbie Beirne who highlighted the pros and cons of research participation from a patient perspective. Debbie, who is leading Yorkshire and Humber Genomic Medicine Centre’s patient involvement panel hinted at how genomic medicine might transform patient’s research participation, for instance in non-research NHS transformation project such as the 100,000 Genomes Project. A urological cancer specialist Jim Catto then explained how clinical trials help patients and participating hospitals. The last presentation by Deirdre Walton was the highlight of that session as the team is keen to hear from patients’ point of view.

Deirdre shared her positive experience of participating in the Optima prelim trial at York Hospital. The OPTIMA prelim trial was a randomised feasibility study of personalised care in the treatment of women with early breast cancer and this is testing validity of Oncotype DX test. Given that Oncotype DX test is now routinely offered in England for some oestrogen receptor (ER)-positive, human epidermal growth factor receptor 2 (HER2)-negative breast cancers, this trial has indeed made a real life impact to a large number of breast cancer patients.

Image of Deirdre Walton sharing her experience of participating in the Optima prelim trial
Deirdre Walton sharing her experience of participating in the Optima prelim trial

The discussion after four brilliant presentations was also interesting for our Wellcome Trust project as it showed research participation could still be challenging for many patients. The issues raised during the discussion included health care professionals’ failure to speak ‘language of people’ but Debbie emphasised that inputs from public and patients in patient information sheets have made noticeable changes. There was also discussion about the disappointment when patients are being allocated in control arms – this shows that patients might have an assumption that intervention is better than non-intervention, which requires clarification when research participants are recruited.

image of Leeds team’s PPI panel members Karen and Jeff were there for moral support
Leeds team’s PPI panel members Karen and Jeff were there for moral support

Kathryn Scott, the Chief Executive at Yorkshire Cancer Research, closed the event by encouraging attendees to support each other and hinted that Yorkshire Cancer Research might be up for hosting another similar event next year.

Genomic medicine: Patients’, practitioners’ and family members’ hopes for the future

INITIAL FINDINGS FROM THE “CANCER AND SOCIETY IN THE 21ST CENTURY” PROJECT

The “Cancer and Society in the 21st Century” research team presented four papers in three different national and international conferences over the summer. These conference papers drew on our initial findings from our interviews and observations conducted in Leeds and Edinburgh since last year. So far we have conducted over 140 interviews with former and current cancer patients, cancer scientists, health care professionals. We also have conducted over 40 observations of patient-oncologist consultations, consenting processes, and laboratory works.

We have been researching how patients, family members and health professionals engage with genomic medicine and its implications for cancer patients. One of the main questions we have been exploring is how finding out more about a type of cancer is related to patients’, relatives’ and practitioners’ hopes for the future.  To investigate this we have been looking at the kinds of thinking and caring work that is required to make sense of genomic information about cancer and its implications.

Tineke (University of Edinburgh) presented a paper at the British Sociological Association Medical Sociology Annual Conference (abstract can be found on page 84) on how ovarian cancer patients and their carers weigh up their situation in relation to the amount of research that is taking place into their and other kinds of cancers. Drawing on 14 interviews with patients and health professionals, Tineke explored how some of the patients who have been diagnosed with a rarer sub-type of ovarian cancer where there are currently less treatment options deal with this in part by being hopeful about the future of cancer research more generally, which can include taking part in promoting and advancing research for their type of cancer and cancer more generally.

Julia (University of Leeds) and Emily (University of Edinburgh) presented a paper at the European Sociological conference in Athens about patients’ experiences of a genomic test called Oncotype DX, which was approved for use within the UK NHS in 2013. The Oncotype DX test predicts risk of breast cancer coming back after initial treatment for some kinds of early-stage breast cancer, by analysing genomic changes within the tumour. Researching on-line discussions, Julia and Emily have found that that these test results provide reassurance but they also involve a lot of thinking work for women as they weigh up this new information, adjust their hopes for life beyond cancer and make choices around further monitoring and treatments. Julia and Emily received interesting questions from the audience, including how the experiences of their interviewees might compare to those who had other types of health tests, such as for high-cholesterol, or PSA testing for prostate cancer, and we will be exploring this over the coming months.

Athens

pills

Looking more broadly, Anne (University of Leeds) also presented a paper at the Annual Meeting of the Society for Social Studies of Science (4S) in Boston, Massachusetts on how a range of cancer patients, their families and practitioners work with hope when they decide on participation in genomic medicine trials, what genomic tests to perform and how to interpret and share genomic results. Drawing on 23 interviews with patients in active trials/studies and patients living with and beyond cancer and family members who act as carers, Anne looked at how participants made choices and developed their understanding of these complicated situations by weighing up and optimising hope for positive outcomes for particular patients in the present and for the patients of the future.

We have also been researching the experiences and perspectives of a growing number of patients who act as a mediator between genomic researchers and cancer patients. Choon Key (University of Leeds) presented a paper at the BSA Medical Sociology Annual Conference (abstract can be found on page 89) on how patient representatives, or patient advocates, act as knowledge broker but also a kind of ‘hope broker’ through their advocacy work. This involves mediating and moderating some of the ‘hype’ of genomic medicine based on their experience as patients and through advocacy work. Choon Key looked at how these 13 advocates craft a balance between advocating for individual patients’ rights to access new tests and treatments, advocating for all patients to have equal access to new advances and prioritising quality of life with and beyond cancer.

As we move forward with our research we will be looking more closely at how patients, advocates, families and practitioners across our entire dataset work with hope to achieve their various goals, and thinking about what this means for how to improve the support offered to participants in genomic medicine research, diagnosis and treatment.

Patient and Public Involvement – A reflection from Alasdair

Alasdair Ferguson is a member of the PPI panel for the project

I am lucky enough to be part of the Patient and Public Involvement (PPI) Panel for the Cancer and Society in the 21st century project, the joint initiative between the University of Edinburgh and the University of Leeds, and supported by the Wellcome Trust. I am particularly interested in how developments in cancer research and care are changing the care cancer patients receive at every stage, having had a recent cancer diagnosis myself.

Members of the PPI panel had a stimulating and fascinating meeting on Monday 8th May when we heard about the progress of the research project to date, and we even had a shot at interpreting the results of some of the qualitative research – we did not find this easy so ‘respect’ to the research team!

In my own situation, having received a diagnosis of prostate cancer I was asked to choose between three different types of treatment (each with its own range of positive and negative outcomes). My response was to voraciously gather information – I made use of the excellent materials produced by Prostate Scotland, I spoke with three ‘buddies’ provided by the Edinburgh and Lothian Prostate Cancer Support Group, I questioned the consultants on what I had researched (particularly on side effects) and – dare I say it – I used the internet extensively, not always with helpful results.

All this helped me to decide which treatment to go for, and I have no regrets about my decision. But I am very conscious of the fact that I had the resources and the knowledge to carry out the research, the time to do it, and the confidence to make the decision with the support of friends and family. But I am also very aware that there are a lot of people out there who may not be in a position to make decisions in this way.

The future will bring great changes to cancer diagnosis and treatment, with stratified cancer medicine (new tests to detect and test for cancer, advances in tailored treatment and more information being gathered through clinical trials). How are we to make sense of the information, and in what form will it be provided? How can we make sure that no-one is excluded from this revolution? The project deals with issues around cancer research and care and the changes that are happening, and asks some of these questions.

Whatever the future brings, it is vital that the patient is at the centre of the whole diagnosis and treatment process.

One of the most enjoyable parts of being a part of the panel has been the opportunity to meet other patients in the same boat, every one with a different story to tell. Nothing can prepare you for a cancer diagnosis but talking and sharing can help you get through it.

 

 

The Kadcyla debate and the future of targeted cancer drugs

Julia Swallow, University of Leeds

Recently in the UK news, there has been extensive discussion about the cost-effectiveness and funding of new treatments for cancer and particular sub-types of cancer. Drugs, which are developed to effectively target particular sub-types of cancer such as human epidermal growth factor 2 (HER2) positive breast cancer, have the potential to improve survival rates and extend quality of life, bringing renewed hope for patients and their families. However, these drugs are expensive to manufacture and for the NHS to fund and it is not always the case that they extend life or quality of life for a significant length of time. This is because certain sub-types of cancer have a complex biology and they may become resistant to treatments. It is therefore a complex process measuring the cost-effectiveness of these new treatments in terms of improved survival and quality of life: the current framework for justifying cost is based on whether the drugs have clear and measurable benefit for patients. In this post, we will discuss the complexities of measuring cost-effectiveness for these types of treatments by looking at the recent debate around NHS funding for Kadcyla (trastuzumab emtansine), a targeted breast cancer drug.

Changing practices around funding cancer drugs

The National Institute of Clinical Excellence (NICE) approve cancer drugs for funding by the NHS through their Technology Appraisal system. Recommendations for funding by the NHS are based on the availability of adequate clinical and economic evidence: ‘clinical evidence shows how well the medicine or treatment works and economic evidence shows how well the medicine or treatment works in relation to how much it costs the NHS’. In other words, NICE evaluate whether the drug represents value for money. The NHS has a legal obligation to fund all medicines and treatments recommended for use by NICE but there may be instances where NICE do not recommend a drug to be funded by the NHS based on cost-effectiveness and this is where the Cancer Drugs Fund (CDF) becomes important. The CDF was set up by the UK government in 2011 however, it is not UK wide and serves only England. As yet there is no equivalent of the CDF in Northern Ireland, Wales or Scotland. The CDF was set up to fund medicines and treatments not routinely available on the NHS, including those not recommended by NICE due to questionable cost-effectiveness or uncertain clinical effectiveness However, as argued by NICE, this model of the CDF created ‘unsustainable financial pressure’ as it was unclear how and when drugs should be transferred out of the fund and into routine NHS commissioning. Thus, in July 2016, following a 12-week public enquiry initiated by NICE, NICE and NHS England relaunched the CDF to include amongst other things, a set time for new drugs to be definitively approved or rejected by NICE. Following the relaunch of the CDF however, over the past year, NICE has rejected funding for several targeted cancer drugs and called for the manufacturers to offer them at a lower price. For example, Kadcyla has been provisionally rejected by NICE, and NHS England have decided to remove it from the Cancer Drugs Fund on the grounds that it is not cost-effective.

The Recent Kadcyla debate

Kadcyla is used for advanced or metastatic breast cancer in people with human epidermal growth factor receptor 2 (patients who are HER2 positive) who may no longer be responding to Herceptin. In 2012, Genentech conducted an international, randomised clinical trial, EMILIA, which revealed that Kadcyla extended life by approximately six months in comparison to other treatments. Kadcyla was first rejected by NICE in November 2015 as it was deemed too expensive and NHS England decided to remove it from the list of treatments made available through the Cancer Drugs Fund. The threshold for approving a drug by NICE is £50,000 per patient per year for an end of life drug and the estimated cost of Kadcyla is £90,000 per patient, per year according to manufacturing company Roche. In response to its rejection, Breast Cancer Now, which is the largest breast cancer charity in the UK, lobbied the UK government and organised a petition requesting Roche to lower the price of their product. Their efforts were successful and in November 2015 the drug was reinstated by the Cancer Drugs Fund.

However, on 29th December 2016, the decision was once again overturned and NICE issued its draft guidance recommending that Kadcyla should be provisionally rejected on the grounds that is not cost-effective. Breast Cancer Now started a petition, which received over 80,000 signatures and with the aid of the All-Party Parliamentary Group on Breast Cancer, the case of Kadcyla was debated in parliament on 26th January 2017. The case drew a number of individuals and their families to testify for the benefits of the drug in the advanced stages of the disease, arguing primarily that it not only extends life and gives patients ‘more time’ but also provides patients with hope for the future when Herceptin may no longer be effective. This was echoed by the Chief Executive of Breast Cancer Now, Baroness Delyth Morgan, who stated when interviewed for BBC News, ‘Kadcyla offers significant and precious extra time for women with incurable cancer in great need of hope, and we mustn’t let it slip away.’

Whilst the experiences of patients constitute one aspect of the discussion, scientific evidence also demonstrates that Kadcyla significantly improves the lives of women living with breast cancer. This makes the case of Kadcyla particularly contentious as evidence from trials suggest that those prescribed the drug have ‘longer overall survival, extending life by an average of 9 months, as well as longer progression-free survival than do patients on other cancer drugs’ (The Lancet 2017). The Lancet commentary also argues that the decision to provisionally reject Kadcyla is based purely on cost and fails to acknowledge the effectiveness of the treatment ‘for a patient group with so few options’. The commentary concludes by stating that ‘NICE must move beyond price as a decision-making basis for treatment’. Balancing cost alongside quality and extension of life is therefore at the centre of concerns over the provisional rejection of Kadcyla.

The relevance of the Kadcyla case to our research

Measuring cost-effectiveness and understanding the complexity of patients’ treatment decisions based on their hopes and expectations is complicated as targeted treatments move from bench to beside. But this case suggests that cost-effectiveness is not a purely scientific matter: patients and their families as well as charities and drugs companies can influence what is understood as ‘cost-effectiveness’ when decisions are made about funding treatments. These debates also shift patients’ and practitioners’ hopes and expectations for the availability of targeted and expensive therapies in the future, bringing new kinds of responsibilities in terms of accessing and sourcing novel treatments and therapies. In particular, some kinds of patients are playing a new role here in lobbying for drugs and participating in research studies particularly as there is an increasing emphasis on public and patient involvement in scientific research and healthcare policy. This has the potential to create a set of highly knowledgeable patients with the resources to contribute to, and engage with, key debates concerning cost-effectiveness. To understand the future for targeted medicine based on genomics we need to appreciate how notions of cost-effectiveness are evolving in this context, as well as thinking carefully about the new kinds of responsibilities that patients involved in lobbying are taking on in this new era of targeted or personalised medicine. We will be following the case of Kadcyla over the coming weeks as NICE issues its final guidance and continuing to reflect on the implications of these developments.

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