Cakes for cure: the role of charities in the embedding of innovative cancer treatment technologies
Lisa Ashmore BSc (Hons), MA
Department of Sociology
Bowland College North
Background and Aims Investment in innovative health technologies has been a focus of increasing critical interest in the social sciences. With proponents of such systems expounding new techniques, a strong normative context emerges for their adoption. Informed by the field of Science and Technology Studies (STS), this study focuses on the discourse used by charitable organizations involved in such investments and how their involvement contributes to the enrolment of vulnerable groups, such as cancer sufferers. A central concern of STS is the strategies scientists use when talking about their work. Methods of communication may often suggest there is only one possible solution to a perceived problem. Such determinism may be reflected in material used by fundraisers where technologies are discussed in a normative, deterministic and definitely desirable way. Charitable organizations in charge of fundraising may thus become deeply enrolled within programmes of development in which the legitimacy of knowledge claims and evidence production are difficult to examine.
Methods Drawing on interviews with health-care practitioners and anonymised examples from public fundraising campaigns linked to two UK hospitals, this study explores a theoretical proposition that fundraising materials can be regarded as tools for the enrolment of vulnerable groups in the processes of technological change.
Results and Conclusions Where patients are called upon to donate money for the newest, and hence perceived best, equipment, practitioners were of the opinion that unnecessary pressure may be placed on the public to support campaigns, the value of which may be unclear.
Radiotherapy, the treatment of cancer with ionizing radiation, has seen exponential technological advancements over the past 20 years. In the mid 2000s, two charities linked to NHS* organizations in the UK launched appeals to raise money to purchase the latest radiotherapy technology, which would enable departments to perform Image Guided Radiotherapy (IGRT). IGRT is a technique used in radiotherapy treatments to improve the accuracy of radiotherapy treatment beam positioning. In improving the accuracy of radiotherapy treatments, it is thought that the margins of healthy tissue around the tumour volume can be reduced and, as such, reduce the side-effects experienced by the patients. In the context of the study described in the present paper, IGRT refers to the adaption of a radiotherapy treatment machine in order for CT scans [more precisely Cone Beam CT scans (CBCT)] to be taken prior to radiotherapy treatment.
When CBCT imaging is discussed in practice, there is a strong rhetoric of inevitability, with proponents espousing a belief in technological progress against all odds. This is also reflected in national advisory groups and evaluation projects1–4. It is widely acknowledged, however, that there is sparse evidence to support the implementation of CBCT scanning into practice, with a recent report from the Centre of Evidence Based Purchasing stating there was little evidence to date on the direct patient benefit of IGRT3.
The launch of the charity fundraising appeals provided a unique opportunity to find out the views of the local radiotherapy staff about technology in current practice, how technologies are introduced and the expectations of the IGRT system in the pre-implementation stages. In informal discussions with practitioners from several departments, they frequently criticized fundraising campaigns. Frequently, alternative uses for funds to be raised (approximately £600 000) were purported, sometimes, but not always flippant. Anecdotally, these criticisms reflected the lack of evidence for the adaption’s introduction and the perception that it was not needed.
A qualitative research design was employed consisting of in-depth interviews with a purposive sample of 13 therapy radiographers and radiotherapy assistants (from this point collectively referred to as ‘practitioners’) from one UK cancer centre. In addition, document analysis of charitable material collected from the published material of two charities based in NHS trusts was performed. ‘Cakes for Cure’ is the name I have given to the phenomenon of charitable fund raising and used here as shorthand for the collective activities of these groups to aid in the anonymisation of the practitioners involved in the interviews.
The socialization of technology, as informed by Science and Technology Studies (STS), is concerned with learning the culture of technologies and the context of their use, meaning and utility. The socialization of medical innovation therefore involves the lay people who become caught up in the process of innovation, usually through experimentation, but in the case of this study, through fundraising.
Using the principles of Actor Network Theory (ANT), it is possible to explore these relations between material and social actors: the charity, the disease, staff groups, public groups, IGRT adaptations and computer systems, to name but a few. ANT methods assemble and link entities in material and social worlds without prioritising one actor over another5, assuming everything is a consequence of its relations with other actors in that world. Approaching the actor network world of technologies examines how relations are made and how discursive orderings within networks can be seen to shape technologies within those worlds. In the actor world of the IGRT, the NHS-based charities are actors in shaping the wider public’s perception of the technology. Within the actor network approach, it is argued that actors may seek to ‘translate’ another by giving them an identity, interests, a role to play, a course of action and projects to carry out. The actor network approach also provides an additional dimension to the study of technology adoption by accepting that the meanings of technologies constantly change through the relations they inhabit. Rhetorical devices, therefore, are vital to ANT worlds, where material and social actors are formed in recursive relationships. ANT accepts that the success of one technology is often at the expense of others and that science and technology possess a force which is created and deployed by many parties. This force is often obscured by the myth-making surrounding scientific advance.
Rhetoric in evaluating technologies
Evaluations of technologies in practice are frequently performed in terms of scientific descriptions of the technical system6,7, patient survival8, ease of use or more technical quality assurance issues7. Evaluating technologies using these methods, however, tends to ignore the changing scene, professional changes and the social context for technology introduction. As May et al.9 posit, these ‘evaluation methods’ may enable the ‘normalization’ of technology while ignoring the social context and day-to-day practice of the implementation.
In an analysis of technologies in radiotherapy in 2004, Soren Bentzen, then Honorary Professor at the Department of Oncology, University College London, suggested.
It seems that anyone predicting a ceiling on high-tech in radiation oncology simply lacks imagination and visions.
(10 : 320)
This comment strongly supports the view that technological change is inevitable but, arguably, also marginalizes the views of others who may not wish to unequivocally to accept new technological systems, for example in the context of a lack of evidence. Bentzen’s view is ‘deterministic’ in its approach to technological change, whereas Webster11, when discussing the socialization of health technologies, suggests a market is created by clinicians, patients, regulatory agencies and health authorities, which define technologies as being of value.
In thinking about confidence with technological systems, it has been suggested that those who express low uncertainty about a technical system are commonly the users of, rather than the producers of, knowledge about that system12. These individuals, or ‘programme loyalists’, include those who simply believe what they are told about the methods of knowledge production and the evidence provided, rather than those who create knowledge about a system. In the context of this study, the programme loyalists could be considered to be charitable groups; and the producers of knowledge could be those working in the practices the IGRT is said to enhance, the practitioners. Kaplan, in her history of medical computing, found that proponents of the US electronic patient records promoted benefits of the systems as irrefutable13. In an historical analysis, she found that once sceptical doctors were, 10 years later, professing medical computing as the way forward. A further 10 years later, the failure of the systems was attributed to the machines’ inadequate practical utility. These changes in discourse provide an informative example of the enrolment of professional groups during proposed technological changes. Kaplan develops Malinowski’s concept of the ‘mythical charter’ to show how the researchers and developers told the history of their work. Computers were a ‘policy panacea’– a solution to all the public policy concerns. The way in which this was achieved was by constructing computer systems as being able to provide progress and visions for a better future. This ‘mythical charter’ can be found in the discourse surrounding many health-care technologies.
In his examination of the Great Embryo Debate in the 1980s, Mulkay explored rhetorical resources used during the parliamentary debate14. He examined the rhetorical devices used and identified two distinct rhetorics, one of hope and one of fear, formed from interrelated background assumptions. In his argument, the rhetoric of hope presents the case for the continuation of embryo research in a strong positive fashion; the contrasting rhetoric of fear uses negative imagery of ‘a potentially dangerous interaction in the natural order of things’ (14: 729). The interpretive link between research, control and human benefit is the central component of the rhetoric of hope. Yet, as Mulkay states.
One important feature of the rhetoric of hope is that it tends to avoid consideration of the social changes that may be needed to put new technologies into successful operation. Participants operating within this discursive form speak as if production of a technical solution to a practical problem is equivalent to elimination of that problem. Thus at the heart of the rhetoric of hope is an idealized vision of the relationship between science and society which enables its users to project an indefinite range of science-based technologies into a radically simplified future where scientific knowledge necessarily extends our control over disease, disability and death, and progressively generates, despite pockets of resistance, substantial improvements in the way of life of society at large.
(14 : 728)
The rhetoric of hope therefore provides a way of understanding methods of translation, as discussed in Actor Network Theory. Using an ANT approach, this study aimed to analyse the rhetoric used by charities in discussing IGRT in relation to the discourse of practitioners.
The chosen research method was a qualitative, semi-structured interview as this was considered the most suitable to collect an authentic understanding of the staff expectations. Ethical approval for the interviews was received from an NHS Research Ethics Committee. Local Research and Development approval and permission from the department manager was also sought and granted before the study commenced.
A letter, information sheet and opt-in slip were sent to all radiographers and assistant practitioners in one UK Radiotherapy department. In total, 52 letters were distributed. Willing participants were asked to place the opt-in slip in a box in the department staff room if they were willing to take part in the interview. From the returned slips, 14 participants were selected in order to achieve a cross-sectional sample i.e. in order to ensure all grades and levels of experience of participant were represented. The sampling method is, therefore, considered to be purposive. The grade of the respondent was the first criteria used to select potential participants from those returning the opt-in slip. Should there have been more than the required number of willing participants, it was anticipated that these would be selected by a) the number of years the potential participant had been qualified and then b) a name being chosen at random. Purposive sampling retains some of the characteristics of theoretical sampling in that it represents a deliberate sampling strategy as opposed to opportunistic or convenience sampling15.
The location of the interview was given careful consideration before the interviews took place. A location with no distractions was vital, and it was acknowledged that interviewing the staff members at work may have compromised the participant. However, I was reluctant to ask staff to participate outside of work time and all participants were, in all eventualities, relaxed enough in the interview to discuss their perceptions openly.
The interviews were semi-structured in order to allow participants’ perceptions of current practice and the role of new technology in that practice to emerge. Prompt questions were used to guide the conversations, but no hypotheses were made in line with the iterative approach that was to be utilized16. The flexible nature of the interviews allowed topics to be discussed in an order determined, in the most, by the participant. This generative approach allowed for the unprompted introduction of the issues surrounding charitable involvement in technology adoption. It was, therefore, after the interviews had been completed that the decision to analyse the charitable documents took place. Samples of documents were obtained from two UK hospital charities. These included leaflets, posters and PowerPoint presentations.
Written consent was obtained from each interviewee to record the interviews and no participants refused to be recorded. Full transcripts, verbatim, were made from these recordings. As a method of data validation, member, or respondent validation was performed17. All participants were invited to attend a de-briefing, or feedback session, in which the main findings from the study were discussed. Six participants chose to attend this session and, as a group, we discussed the interpretations made of their responses and any changes were incorporated.
The text from the charity documents were examined and analysed iteratively in order to identify affirmations which defined the desirability of technology. These key points and phrases were subsequently contrasted to the issues raised by the practitioners. Documents from a second hospital trust, of similar size, were obtained in order to corroborate the rhetoric used by charities when discussing IGRT technologies.
The following section presents statements made by the practitioners and selected statements from the charitable documents. Those from the charitable documents are displayed in Table 1 (any text in italics is my own emphasis).
Table 1. Examples of the rhetoric of hope found in charitable material
|Quotation One||This technology is the future of Radiotherapy treatment|
|Quotation Two||Obtaining high-quality images using the IGRT adaption will make treatment more effective, reducing the chance of the cancer returning|
|Quotation Three||Current imaging cannot ensure we are hitting the tumour and sparing the healthy tissue. There is always a compromise, and therefore, we need these large margins. Image guided radiotherapy can change all that|
|Quotation Four||The greater accuracy of treatment it can deliver will reduce side-effects and give patients a far better quality of life during treatment|
Of those willing to participate, 13 of the 14 were interviewed (one staff member was absent from work for most of the data collection phase of the research and therefore an interview could not be arranged). The grade of participants interviewed ranged from Band Four to Band Seven† and the number of years experience ranged from one to 28. Over half of the participants spoke, unprompted, about the charitable appeal for the IGRT technology. These practitioners were of the opinion that pressure was being placed on patients and the public to support the campaign.
One practitioner referred to an event held in the radiotherapy department where the manufacturers were presenting information about the equipment during the fundraising process. Major funders of the charity, mainly local business leaders and potential donors, were invited and staff were encouraged to attend in order to show clinical support. Staff members were instructed not to ask any questions during the meeting so as not to distract the potential donors from the benefits of the technology. The silent presence of the staff at this meeting placed them in the role of clinical supporters. Yet the desire to operate the equipment in the following extract suggests staff were less willing to adopt this role.
They were asking for people to be more pro-active with raising the money for IGRT, to try and get involved with [the campaign] or try and make some contribution if you could in any way possible to raise this money. The threat came out from [management] saying ‘And if you don’t you won’t be rota’d [allowed to use it] on there’ and everyone went (shrugs) ‘Not bothered’ so she went ‘Okay then, you will be rota’d on there’ and everyone went ‘Not bothered’ and I thought that was quite telling.
Issues of staff personally raising funds for the charity were discussed frequently during the course of the interviews. One staff member discussed how she did not know whether IGRT was beneficial but had helped to raise some money for it.
So I don’t know if it’s a good thing or a bad thing but I have helped out to raise a bit of money for it.
Two practitioners believed that the material being used to advertise the campaign was ‘misleading propaganda’ in order to encourage current, and past, patients to donate to the fund. They felt patients were encouraged to perceive ‘newest as best’ without providing sound factual evidence. In fact, during the interviews, there was an overall acknowledgement of the technological advantages of the IGRT adaption but, based on their longstanding experience working with both patients and machines, the practitioners articulated objections to the political and social ethos of the proposed change. One practitioner pointed out how funding for the equipment was turned down by the government and went on to question the subsequent use of public funds to fill this financial gap.
I am opposed to publically raising money for something that has been turned down by the government…I think it is important to move forward, probably. The only thing is, you know, IGRT still isn’t proven as such, you know, and that’s going to come with…well you’ve got to wait for the time really.
Yet, in the charities’ promotional material, they suggest that the technology represents great hope for the future of radiotherapy treatment (Table 1, quotation one). The question of evidence must be weighed against further statements found in the documentation from the charity, such as that in quotation two.
In the interviews, practitioners were disturbed by this local promotion of the benefits of IGRT. They suggested this campaign made it difficult to decide who benefits from the treatment, once it is installed.
…I think patients will expect and, I think in a way they should expect, if a place’s got new technology they [the patients] should expect to have to use it and be part of it…
Like IGRT, for example. You know, a new thing in, the way it’s sold, like, say if you look around the coffee shop area and you’ve got things out, you know, for patients to read, it comes across very patient-focussed, you know, ‘This is the best thing ever because now we can, you know, treat with the most accuracy ever and this,’ but I think what the patient’s not always told is that the treatment doesn’t apply to everybody, erm, and yeah it’s not just, not always across the board. I don’t think it’s always sold like that.
Practitioners use their contextual knowledge to question this ‘selling’ of the technology ‘across the board’.
…if they [the patients] knew enough about it [the new technique]; well there’s nothing wrong with what we give them now, basically… I think the word cancer frightens everybody to death, doesn’t it? Once they know they’ve got cancer and they think somebody’s getting more [advanced treatment] than they’re having, they don’t understand that they can’t have it because of whatever protocols or whatever, they just think, ‘Well why’s he having it and I’m not?’
The practitioners offer an evaluation of the IGRT from their context, that of practical utility. Frequently the practitioners felt that the IGRT system was being marketed as providing a better treatment than was currently available to patients, despite their worries of a lack of evidence to support the claims made. In the charity discourse, however, the machine is portrayed as saving lives, ‘tomorrow’s treatments today’ and policy, or even life aspirations are projected onto the technology. It appears though that these aspirations, and the narrative of the charities as shown in quotations three and four of Table 1, do not necessarily correspond to what the practitioners believe the implications of bringing in new technology will be.
I think, because they want to move forward with the times, they don’t always think about the implications [for] the patients when things are put in place…they are bringing in technology that isn’t always, like, suitable for the patient.
These concerns over the implications and the decision-making process were voiced elsewhere too.
And yet it’s made out to be that we wanted it: ‘You wanted this so you raise the money’. And it’s like, well, nobody specifically went and asked for it, and had [management] approached everyone and said ‘What do you think about this idea?’ it may have encouraged people to - feel involved in making the decision.
One practitioner felt, however, that because the public had been involved in the fundraising campaign, the machine would have to be used, against all odds.
If we’ve had the fundraising [campaign] and there’s been such a big fuss made about it then it might push things along…because people are going to have a problem with donating all this money if it’s then going to sit there and not be used.
The rhetoric used by the charity succeeds in locating the new technology within normalized practice by showing it as complementary with current techniques and a vital ‘add-on’ to current practice. The IGRT is placed within an existing and widely accepted framework of ideas, values and practices (most of the potential donors will have had some experience of radiotherapy either directly or indirectly through a family member) and the mythical charter, like that discussed by Kaplan, can be found in the rhetoric used by the charities where policy and life aspirations are projected onto the technology13. However, Kaplan warns that systems based on a ‘mythical charter’ embody the goals and values of the groups which create that charter and not necessarily those shared by the practitioners (or users of the systems). Therefore, the mythical charter of the IGRT promised to the publics‡ by the charity does not necessarily correspond to what the practitioners believe the implications of bringing in the IGRT will be. Kaplan warns against the inevitable failure of attempting to adopt innovations which conflict with the culture and values of those supposed to adopt them. On some level, therefore, there is an obvious naivety held by those raising money for the IGRT as opposed to those expected to work with it. However, the role of the charity is to promote the advantages of the IGRT, to create the mythical charter for the innovation, mobilizing support and placing it into normalized practice, not to consider the wider, longitudinal aspects of the technological change.
The charity uses the mythical charter as a solid component around which it is possible to build an actor-network. It takes the benefits of the system for granted in order to translate, or get the publics to subscribe to the premise of IGRT. In that sense, the charity facilitates the normalization of the IGRT system. In the simplest form of Actor Network Theory, the act of translation of one actor by another, solidifies the actor-world by removing any resistance to the project and removes traces of the history. Therefore, if we consider the role of the charity, the charity translates the various publics by providing information about the system in the form of presentations and leaflets. However, as Callon et al.5 state, translation does not occur without resistance and, in order to persuade an actor to translate, the charity has to displace them from their current standpoint. The practitioner who was quoted as helping out to raise some money for the charity did so despite not making a judgement of effectiveness on the system because she is enrolled, however reluctantly, into the actor world of the system by the charity and department management.
In the discourse of the charities, reflecting the scientific discourse of the equipment manufacturers, the use of the rhetoric of hope is evident: a rhetoric of hope, vision and persuasion, encouraging potential donors to consider ‘life after cancer’ and increased effectiveness of treatments. Embedded within this discourse of hope, vision and persuasion are the unproblematic assumptions that scientists are always to be trusted and that their knowledge of the problems in radiotherapy treatment and the possible solutions to these problems are always reliable and altruistic. The charities use this idealized version of the situation, whereas, conversely, the practitioners at the centre of the technological change may more often refer to a lack of evidence, absence of proof, a lack of compatibility with other technologies, the politics of the decision-making process and perturbing doubts.
Controlling the nature of the discussion between practitioners and manufacturers, in front of potential donors, serves to fuel the normalization of the IGRT innovation by preventing the questioning of its use. Silenced practitioners are not able to add to the discussion because of the regulated agenda of the public meeting. Their questions (and knowledge) are therefore subject to controls and constraints exercised by the charity, in a sense creating a situation akin to a ‘regime of truth’ about the machine: a truth which may be seen to marginalise local knowledge18. As a result, only selected types of discourse are accepted and disseminated as factual. The incident of the public meeting displays the way in which practitioners’ behaviour (by encouraging them to attend the meeting) and discourse (by asking them not to ask questions) is managed by the charity. The ‘truth’ about the machine, as discussed by the manufacturers in this meeting, becomes constructed out of discursive moves made in this context.
In the case of IGRT introduction, the charity, in the presence of the silenced practitioners, therefore acts as the mediating entity, adapting and adopting the discourse of the manufacturers but with the acceptance, or image, of being neutrally scientific and on the side of the patient. Technological change is not, therefore, simply the application of science. It is also what constitutes science and what constitutes knowledge, along with how knowledge is presented and judged within that constitution. The patient and non-patient publics are given ‘enough’ information by the charity to enable them to decide whether to donate money (a sign of adopting the technology) or not to donate money (a sign of rejecting the technology).
By targeting the information delivered, using terms such as ‘greater accuracy’ and ‘life after cancer’, the charities succeed in placing the IGRT in the way of this vulnerable audience. The IGRT is constituted as the key to all problems with radiotherapy. The individuals are left thinking that if there is no access to IGRT, their potential future treatment or that of their families will not be accurate and there will be no ‘life after cancer’. Any uncertainty is removed for the public groups by the normative framing of the innovation, yet at the same time, uncertainty is fuelled for the practitioners who have no voice in the decision to introduce something they are not sure of.
The normative framing of technology by programme loyalists, such as the charity, creates a discourse about the system which casts it as an almost inevitable and definitely desirable system, putting into action the rhetoric of hope. The practitioners who work with patients and machines talk about the resulting quality of care, their confidence with the system and resultant changes to their professional image. They also discuss potential ethical dilemmas they may face, framing the technology with a higher degree of uncertainty.
What I suggest is that the way in which charities position technology in the eyes of the potential donor is an important factor in how technologies become normalized, an area which has received little attention. The charities enable any discussion regarding IGRT to be located in a discourse that is meaningful to lay publics. Where this discourse takes place and the rhetoric used in the discussions contributes to the progression of the technology into practice13.
Therefore, the charity acts as a funnel for the flow of information between the scientists (manufacturers) and the various publics in order to empower them to demand treatment using the newest technologies. The successful implementation of the IGRT, in the face of concerns held by the practitioners, can then be considered a success of the discourse rather than an achievement of the product, although it is noted that success will be perceived differently for all the groups and individual actors involved. Success for the charity is to reach the target set for the purchase of the equipment. Success for the manufacturer is to sell the IGRT adaption and create a market for it, not only in the purchasing department but in others too. Success for the practitioners could be little disruption to their workload or a seamless service for their patients. Success for the public could be life after cancer or treatment appropriate for risk or, if they wished, the newest treatment available. What is evident, however, is that charities’ discourse acts as a legitimising force when discussing the change with very vulnerable social groups such as those affected by cancer.
In line with theoretical generalization, this study did not aim, and does not claim, to provide data which can be inferred to other settings or contexts beyond that being studied17. The aim was to examine the use of rhetoric in new technology implementation processes and to develop the theoretical proposition that the discourse of charitable organizations can be seen to influence the normalization of new medical technologies.
This study has demonstrated that through charitable fundraising campaigns, public groups, including vulnerable groups such as cancer sufferers, are enrolled in technological change processes, fuelling the normative power of technologies. The ‘Cakes for Cure’ charity provides a metaphor for the role charities take in mediating the normalization of technologies into health-care practice. The charity, through its discourse of inevitability and desirability, presents a meaningful argument for lay publics, from which potential donors can formulate their reactions The charities’ efforts in translating public groups enrol the individuals in the idea of those technologies at the centre of fundraising campaigns. As such the embedding of technology into practice appears straightforward once the charity has raised the publics’ consciousness of the adaption and made new, and hence perceived ‘best’, treatments something which patients can demand.
The National Health Service is the publicly funded healthcare system in the UK. The large majority of British citizens rely on this system for formal medical care.
These ‘bands’ refer to the nine pay bands under the NHS grading and pay system.
The use of ‘publics’ here is to represent multiple groups: patient public, non-patient public, Primary Care funders, local businesses etc.
I am especially grateful to all of the practitioners who generously gave their time to take part in the interviews and share their thoughts with me. I also thank my supervisors, Dr. Maggie Mort and Prof. Brian Bloomfield, for their inspiration and Dr. Dawn Goodwin and Prof. Theo Vurdubakis for their comments on earlier drafts of the paper.
Sources of funding and conflicts of interest
My PhD studies are funded by an ESRC Interdisciplinary Studentship. One of the charities in this study is also a minor funder of the research.