Recruiter-patients as ambiguous symbols of health: bionetworking and stem cell therapy in India

Abstract

Healthcare service providing centers in India offer contentious stem cell-based therapies to patients for an array of medical conditions. Among strategies these centers adopt to recruit new patients from local, regional and global spheres, the most prominent is the use of “recruiter-patients.” Recruiter-patients are a group of patients who either have already received or are in the process of receiving the therapy and, importantly, are used by service providers as mediums or tools to attract desperate yet novice therapy seeking patients to the ambit of the stem cell therapy enterprise. This article is based on a multi-sited ethnographic study at stem cell-based therapy providing centers in different parts of India between July 2008 and June 2009. Using the concepts of “bionetworking” and “ambiguous symbols,” this article explores how recruiter-patients are used by service providers as tools for the recruitment of new patients and why they are effective.

Keywords:

• recruiter-patients
• bionetworking
• ambiguous symbols

Introduction

Stem cell therapy (SCT) is emerging globally, including in India, as a novel and promising treatment for several medical conditions such as spinal cord injury, diabetic ulcer and myocardial infarction for which conventional medicine is considered to be ineffective (Wainwright et al. 2006, Williams et al. 2008). Wealthy and “desperate” patients from across local and global spheres constitute the main target groups for this therapy (Lindvall and Hyun 2009, Patra and Sleeboom-Faulkner 2010). Competition among therapy providers has become increasingly fierce, even though the efficacies of the therapies are now questioned internationally among scientists (Duncan et al. 2008, Hyun et al. 2008, Lander et al. 2008). One issue of sociological relevance is what mechanisms exist for the recruitment of clients. This article researches one of the strategies used by some service providers to draw clients into the ambit of the treatment. They adopt a strategy whereby patients who either have received treatment or are undergoing treatment at several service providing centers play an important role as “recruiter-patients” to influence potential patients who are desperately looking for treatment avenues. These recruiter-patients are used as mediums or tools to influence potential clients/patients in various ways, including personal meetings with new patients or relatives in clinics, telephonic advice, and web-based advertisements in the form of testimonials.

This article aims to show how recruiter-patients are used to attract desperate patients. First, it provides empirical evidence on the workings of recruiter-patients as lucrative tools; second, it shows how recruiter-patients are used to enrich the bionetworks of private therapy providers in hospitals; and, third, the analysis in this article shows how the multiple social functionality of the image of patients is exploited by strategically turning them into ambiguous symbols, thereby violating the trust of potential patients in stem cell therapies.

Methodology

Data for this study was collected using qualitative anthropological fieldwork methods, including participant observations and semi-structured interviews. The study was conducted at various stem cell therapy providing centers and research institutions located in different parts of India. These locations were selected on the basis of their reputation as leading stem cell research and/or therapeutic service providing centers by using patient narratives, media reports and web searches.

Based on their mode of service provision, there are three kinds of SCT providers in India, namely, public sector, private sector and independent practitioners. Semi-structured interviews were conducted with medical care givers, stem cell researchers, treatment-seeking patients and their accompanying family members or relatives at three public sector hospitals, three private sector hospital-cum-stem cell research institutes and three locations where independent practitioners make experimental stem cell therapy (ESCT) provision available. The first author has interviewed, among others, seven patients and their relatives, five stem cell scientists, six medical doctors, eight middle-level stem cell researchers, three project heads and five ethics committee members of Institutional Review Boards (IRBs) at the various institutes.

Participant observations were conducted at two stem cell-based service providing centers in Delhi and Chennai. The first author spent at least six hours a day for a period of one week at each place observing the day-to-day activities of the research staff, medical care givers, visits of patients and relatives to the clinic, negotiations between the service provider and service seeker about the care and the interaction that they have in the hospital situation. Both the service provider and seeker had prior knowledge of the presence of a social science researcher interested in the treatment. It must be made clear here that the first author did not always have access to all interactions between service providers and seekers.

Fieldwork-based primary data gathering for this study was carried out for a period of three months, within a period of one year stretching between July 2008 and June 2009. Several follow-up telephonic interviews and email communications with key informants and interviewees are also part of this study. The research upon which this study is based has been through ethical review at the universities of Sussex and Cambridge. We have used pseudonyms to maintain confidentiality and to protect the identity of research participants, but the names of individuals and institutions well known in the public sphere we have not altered. Interviews in the field were conducted in English and in the local language, such as Hindi, Oriya and Bengali. Interview materials quoted in this text are presented verbatim for interviews conducted in English. Translated interviews from local languages are indicated in the text.

Stem cell therapy and patient recruitment in India

Over the last decade India has emerged as one of the preferred locations for stem cell-related research and as a site for experimental stem cell-based intervention activities. It has become possible due to, on the one hand, proportionally greater investment by the state in medical biotechnology research and development (Salter et al. 2007), a state of stem cell “governance vacuum” (Sleeboom-Faulkner and Patra 2008) and a lack of authority for regulators to enforce policies (Pandya 2008). On the other hand, India has benefited from the policy decisions and ethical dilemmas over embryonic stem cell research in the USA (e.g. NIH's moratorium on public funding for stem cell research in 2001) and stringent regulation on the clinical application of adult stem cell therapies in the West (Kulkarni 2008, Salter 2008). Government policies on stem cell science in India have been very supportive of programs that aim at promoting both basic and translational research in view of its potential application (Sharma 2006). Among policy issues, public–private partnership in basic and translational research in stem cell science is given importance, which signifies an atmosphere of renewed vigor, flow of capital and strengthening of capabilities. There are many such initiatives in India among academic institutes, hospitals and industries in the field of stem cell research and therapy. In India, stem cell application or therapy services are on the way to becoming a common practice – with many tertiary level hospitals and healthcare centers entering into stem cell research and/or clinical application as part of their service provision.

Service providers have varied motivations and interests in making stem cell therapy available to their patients/clients depending on their institutional alliances, locations and patient recruitment strategies. For instance, the main motivation behind service providers in publicly funded tertiary level hospitals is to make the therapy available to a maximum number of patients at an affordable price, whereas privately funded healthcare centers view it as a commercial enterprise and target a client patient population that is needy, desperate and wealthy. In this article our main focus is on therapy providing centers that have alliances with private sector healthcare centers. These centers offer service providers a maximum dynamism in terms of infrastructural growth and patient recruitment, while providing potential links across local and global spheres to exploit the variations in local conditions and national regulatory mechanisms. The main focus of this article centers on service providers based in private sector institutions.

Bionetworking

In this article, by using the concept of “bionetworking,” we have attempted to describe the strategies that stem cell therapy service providers, especially those based in the private sector, employ in order to recruit patients from local and global spheres. Bionetworking, in the context of our study, denotes a form of connecting up with key individuals involved in research and healthcare organizations who take advantage of the unequal socio-economic and regulatory contexts in which stem cell research takes place and therapy is provided.

The concept of “bionetworking,” on the one hand, refers to the ways in which stem cell therapy providers make use of local, national and global differences in regulatory, political, and economic circumstances and healthcare provision, and is used to capture informal forms of social and entrepreneurial liaisons within them. It recognizes that the “business of biomedicine” (involving patients and biomaterials) is negotiated by life scientists, science managers, medical professionals and patients. Thus, bionetworking concerns their strategic decision-making based on knowledge and perceptions of regional and global inequities, and differences in regulatory regimes and research cultures (Sleeboom-Faulkner 2010). On the other hand, the concept links together institutional complexities covering both private and public means, semi-underground activities in small hospitals and healthcare hubs, and comprises the initiatives of individual physicians in hospitals and university researchers by revealing the functional connectivity between medical institutions and the kinds of therapies they provide: the activity of bionetworking makes use of the ambiguity of formulations and the gaps in the regulation of stem cell research, its poor implementation, and the unmet needs of patients both at home in India and abroad.

Recruiter-patients

In the field of business, sellers are known to use agents who pretend to be enthusiastic clients with the aim of promoting a particular product. As will be shown, this kind of strategy is also used in the field of biomedical technology. For, in stem cell therapy, service providing centers use patients as agents to influence and attract new patients. We term these patients “recruiter-patients.” In the context of stem cell therapy in India, recruiter-patients either have received or are in the process of receiving stem cell therapy. This phenomenon is associated with “non-standard” medical practice, mostly conducted covertly or in the guise of officially authorized clinical trials.

Recruiter-patients are used as tools by the service providers in various ways – in web-based advertisements with video clips showing patients' testimonials of the improvement in their medical conditions, by allowing desperate and new patients and their relatives to meet a “cured” patient in person and in arranging telephonic talks between recruiter-patients and clients. Three conditions characterize the development and the use of recruiter-patients. First, stem cell therapy enterprise is largely provided covertly, so that patient recruitment is generally conducted behind closed doors. Second, a situation of fierce competition among service providers in private sector hospitals/clinics in India has led to unscrupulous methods to attract a maximal number of patients; and third, the regulatory apparatus of the state is unable to monitor these stem cell therapy enterprises.

Recruiter-patients as ambiguous symbols

In this article we use the concept of “ambiguous symbols” to shed light on the social relationship between recruiter-patients, therapy providers and potential patients. Ambiguous symbols can be meaningful in different ways to different stakeholders and they can be employed to disguise actual practices. In this case, the concept of “recruiter-patient” is used to symbolize successful treatment. In the case of recruiter-patients, the “regained” health of the recruiter-patient as a symbol of health signifies positive medical experience. Providers use the so-called newly found health of the cured patient as a symbol for successful therapy. Potentially, this performance forms a lucrative source of income for the service provider, while potential patients are unaware of the unevidenced nature of the experimental therapies the recruiter-patients disguise. Although recruiter-patients embody the symbolism of “cured patients,” to service providers they symbolize the promise of potential patients. The ambiguous symbolism of the recruiter-patient, then, serves the continuity of an exchange characterized by inequality, dependence, and manipulated potentialities of health and profit.

In practice, this ambiguity is revealed only rarely. One instance is when the Public Relation Officer of a stem cell service providing hospital in Chennai commented on the use of “old-patients” – those who have already received the therapy – as tools for the recruitment of new clients:

To view some patients as mere “recruitment tools” or “instruments” is something that undermines their self-esteem and the fact that they are autonomous, intelligent and people with human values. It is undignified to categorize them as such. Rather I will call their services as something very humane, something with higher virtue. I believe some of them, not all, do it as part of their gratitude towards the hospital and more towards the therapy as a source of hope and solution to their problem. (Translation by PKP)

In this perspective the service provider views a patient's gratitude towards the hospital as a form of obligation. Some patients may truly feel indebted to the hospital as the treatment they receive they believe to be unavailable elsewhere. They feel it as their duty to return their debt and also to help other patients. For instance, one spinal cord injury patient from Rajasthan, who received adult and embryonic stem cell therapy at different places in India, explained:

I feel particularly obliged to inform other patients in need of help about the availability of stem cell therapy at such and such places. I feel this as part of my duty in belonging to a particular kind of disease group. I do not like others to face the same kind of anxiety and desperation that I faced when I was looking for a therapy. Moreover, I feel obliged to the hospital for whatever improvement I find after three years of life with a wheelchair. I too have a duty towards other patients. (Translation by PKP)

From the perspective of a patient who has received therapy for an ailment that has no success with conventional modes of treatment, developing a sense of gratitude is not uncommon. Service providers exploit the gratitude of patients and attempt to institutionalize it as part of their client-recruitment strategy.

Other cases concern not the performance of ex-patients, but the charade of healthy individuals. A relative of a spinal cord injury patient, who has closely observed and interacted with several stem cell therapy service providing centers in India, made the following observation:

Several clinics and hospitals that are providing stem cell therapy do use some patients as agents in order to influence desperate patients looking for treatment avenues. Sometimes, they are even fakes. Members of their office staff pretend to be cured patients. They do nautanki [pretend] as if they are real patients who have benefited from a therapeutic service and do influence others to take the therapy. Of course this happens only when there is a telephonic interaction. The whole exercise of seeking prior information from old-patients or interacting with them through telephonic interaction is almost always forged and is stage-managed by service providers. (Translation by PKP)

The reach of impersonal interactions, such as telephonic conversations between recruiter-patients and clients, is limited. But other kinds of impersonal interactions, such as web-based patient testimonials have a wider reach, as more and more desperate and terminally ill patients from resource-rich countries and wealthy patients from resource-constrained countries have Internet access. Recent studies (Lau et al. 2008, Regenberg et al. 2009) show how direct-to-consumer advertising via the Internet is likely to play an important role in an “early market” where patients are seeking and accessing putative stem cell therapies. A web-based patient testimony by Amanda Boxtel, an American patient who has received contentious embryonic stem cell therapy in a private clinic in New Delhi comes across as very persuasive. She writes:

I am compelled to share my experiences with the world. After fifteen and a half years of being in a wheelchair as a T11-12 complete spinal cord injury and two months of HESC treatment, my toes are moving; my bladder and bowels are beginning to function again; I have increased muscle power in my legs; and hope is now a part of my vocabulary! (Boxtel 12 September 2009)

Elsewhere she writes:

Any new bodily improvements that I have experienced since the first day of treatment in India on June 25, 2007 I attribute to the Human Embryonic Stem Cells. There is no other explanation. A positive attitude, prayer, diet, or alternative therapies never brought life and restored function into my legs. My body's awakening is proof in itself. For this reason, I know I haven't been injected with a placebo or apple juice. (Boxtel 12 September 2009)

It is difficult to determine whether such testimonials genuinely portray patients' experiences of improvement in their medical condition and gratitude towards service providers. But there is no doubt that such testimonials are compelling in nature and content. Stem cell providers, then, exploit the symbolism of “cured patients” to attract new patients. Although it is not clear if “the cured patient” is a grateful patient, or a person paid to act as one, the symbolism of “the cured patient” is crucial to the connection between all involved.

Stem cell tourism and the role of recruiter-patients

The phenomenon of “stem cell tourism” and the emerging role of recruiter-patients are closely related. Stem cell tourism is a new form of medical travel (Lindvall and Hyun 2009) across local, regional and global locations driven by hope and hype. As the flow of patients across countries in search of stem cell-based treatment is growing, so are the concerns over baseless claims, adverse medical effects and unethical means in patient recruitment (Kiatpongsan and Sipp 2009, Lindvall and Hyun 2009, Patra and Sleeboom-Faulkner 2009).

In the Indian context we categorize three types of service providers according to their drive for service provision and their institutional embedding within Indian healthcare: the public sector, the private sector and individual practitioners. These various service providers employ diverging networks for the promotion of research into stem cell science and for patient recruitment. The kind of infrastructure that private centers develop around stem cell services, the kind of advertisement they circulate and the kind of patients they recruit for SCT services were indicative of their bioethical stance. Personnel in the public hospitals, financed by the state and representing official government policy, view the emergence and scope of stem cell research and therapy as a social enterprise that has potential to transform the economic and healthcare needs of the nation and do not tend to use recruiter-patients. For the private sector healthcare providers, stem cell research and therapy constitute a commercial enterprise in a time of healthcare privatization and the state's encouragement of public–private partnership in techno-scientific research. Individual practitioners consider stem cell research and therapy as an opportunity for earning money, and gaining professional experience and fame, while targeting growing numbers of middle class patients searching for healthcare outside the public sector.

The role of recruiter-patients is more prominent in the private sector and among individual practitioners in comparison to the public sector. Patient recruitment requires a well-defined strategy that varies across service providing centers and hospitals depending on their size, infrastructure and networking tactics. The use of patients to attract new clients is an integral part of the private service provider's scheme. A public relations officer of a multi-specialty private hospital in Chennai, which claims to have provided stem cell-based therapy to over 400 patients in the last two years for various medical conditions, explains the rationale of using recruiter-patients:

People will come to you only when they see the results for themselves and they are convinced about it. They want to see it before they believe it. Or at least they want to listen first hand. You know, they have to spend so much money, therefore they should have a chance to see for themselves and listen to the experiences of patients who have benefited from the treatment. For that reason we arrange meetings with patients or provide their contact details so that they can directly interact. For us the patients who have received good results from the treatment are our best advocates. You can say they are our ambassadors.

The views of patients and their relatives about the role of recruiter-patients varies, usually depending on the therapy provider they are associated with. Some patients and relatives believe that recruiter-patients have played an important role in their decision to go for stem cell therapy. They feel that the first hand narrative of the recruiter-patient helped them to take an informed decision about the risks and benefits involved, about the quality of service and about what to expect from the treatment. One patient, who had recently received several doses of embryonic stem cell therapy at a private clinic based in New Delhi, narrated the following:

We came to know about this clinic in Delhi from a patient who had received stem cell-based therapy here for spinal cord injury. Upon our request, the clinic provided his contact address to us. The clinic even arranged a meeting between the cured patient and us (family members). After seeing the patient's improvements, his self-confidence and after listening to his narratives we decided to receive the therapy. His narratives and experiences were very convincing. (Translation by PKP)

Another patient had a different experience. Mr V believed that the contact addresses and names of patients provided by the clinic/hospital for pre-service interactions were fake, and that they constituted manipulative acts by the clinics concerned. He claimed that recruiter-patients work as agents for private providers and that their main job is to attract as many patients as possible into the ambit of therapeutics:

I urge people not to fall prey to the trap that these hospitals are adopting. To my utter shock, the doctor and the whole LL hospital system are into fraudulent activities. They use “old patients” and their false testimonials to influence clients. When I asked for contact numbers of some patients, I was given two contact numbers by the public relations officer of the stem cell department at the hospital. The two patients I contacted over the phone had a very high opinion about the treatment results and hospital facilities. But they showed one or the other pretext to avoid a personal meeting with me. Later on I found out that the numbers provided belong to the staff of the same hospital and the patients were not real but fake. I felt cheated. (Translation by PKP)

Private hospitals involved in stem cell therapy services try to maximize patient intake by the strategic use of recruiter-patients: their symbolic value as cured patients is used to entice patients to undergo unverified therapies. But when the health symbolism of recruiter-patients is questioned, the meaning of healthcare provision in general becomes problematic.

Recruiter-patients as ambiguous symbols of health

This section is based on two cases related to a particular hospital called LL Hospital in Chennai. The first case is based on a web-based narrative by a patient who had received adult stem cell therapy for his spinal cord injury and the second case is based on the first author's meeting with the same hospital personnel. The cases illustrate how stem cell therapy service providing centers in the private sector use the symbolism of cured patients and forge the role of recruiter-patients strategically as part of their bionetwork.

LL Hospital is a group of hospitals based in Chennai, a city in southern India, which claims to have provided stem cell-based therapies successfully to nearly 400 patients over the last two years for an array of medical conditions, including spinal cord injury, myocardial infarction and diabetic ulcer. LL Hospital claims that nearly 30% of its clients constitute patients from abroad, especially from the USA, Canada, Australia, Spain, Pakistan and Sri Lanka. The multi-specialty center of the hospital has branches all over the city of Chennai and within the state of Tamilnadu. It draws patients from these branch hospitals through referral and on a recommendation basis using a “hub-and-spoke” model.

Case 1

Mr Patel, a spinal cord injury patient from Gujarat, contacted LL Hospital for possible stem cell therapy after he had been unsuccessfully treated for the ailment elsewhere. He came to know about the hospital from a newspaper article and subsequently from the hospital's website. Desperately, he wrote an email to the head of the stem cell section at LL Hospital, Dr R, for guidance. Dr R advised him to speak to two patients who had been successfully treated for similar injury at LL Hospital. Upon his contact with both the patients, Mr Patel was given positive feedback about the treatment and the hospital. Mr Patel was then influenced by the feedback and decided to take the therapy at LL Hospital. But after a while, he became suspicious of their communication, including that with the coordinator of the hospitals who managed the treatments and one of the patients with whom he had interacted earlier. Eventually, he became convinced that the voices of the coordinator and the patients were one and the same and that he had been scammed. In his blog on the Internet the patient made the following statement about the incident:

A while back I spoke to Mr. SR who is a coordinator of the stem cell department in Lifeline hospital. Something was very fishy; the voices of Mr. SV and Mr. SR seemed very similar. So I went to the website http://www.stemcell-india.com/ and checked the Contact us section http://www.stemcell-india.com/contact.htm. I was so hurt to see the Mr. SR's number on this page and Mr. SV's number on the above email were one and the same. (Taken from the web-blog of Mr Birju Patel, dated 8 February 2007)

Not surprisingly, the magic attraction of the recruiter-patient disappeared in the mind of the disillusioned patient.

Case 2

The first author independently visited LL Hospital in Chennai and met with the coordinator and physician-in-charge of the stem cell therapy department. Upon request to meet patients who have had successful stem cell transplantation, the author was provided with two contact numbers, one of which gave no response. The other was found to be a recruiter-patient who gave very positive views about the treatment and the hospital's medical services. But the patient did not want to meet personally, as he lived far away from Chennai city. After cross-checking the contact number, it was found to be identical to the number of a member of the stem cell department of LL Hospital. The identity of the patient had been forged and the whole episode appeared to be stage-managed.

The cases show a similar storyline in which the authenticity of recruiter-patients is disputed by service seekers when they discover that some service providers are pretending and acting as cured patients. When the pretence of the service provider is revealed, stem cell therapy in itself becomes disputable, with has consequences for the acknowledgement of the integrity of stem cell research in general.

Conclusion

With the growing public expectations of stem cell therapy and the widening access to global information flows, recruiter-patients based at the local and global spheres of stem cell therapy providing centers have come to play a crucial role in clinical stem cell applications. The proliferation of unverified stem cell-based medical treatments has complicated the decision-making of patients and their relatives with the increased use of recruiter-patients.

Recruiter-patients have become a means through which bionetworking activities are executed by service providers: they exploit relations of dependency and financial and health uncertainties around the globe. Recruiter-patients link together service providers, patient groups and their families, and stem cell therapy technologies across local and global spheres of practice. In bionetworking, private providers strategically mobilize recruiter-patients as human symbolic baits to attract patients to controversial experimental stem cell therapies.

The symbolism of “cured patients” is crucial to the decision-making of potential patients that have little means to verify either the scientific value of the therapy or the veracity of the recruiter-patient, but much to gain from effective treatment. When recruiter-patients are found to be fake, the symbolism of “cured patients” loses its meaning, but also the value of stem cell therapy is doubted. It is not just the faith in healthcare providers that is at stake here, but the future of regenerative medicine could well suffer from the disillusionment of these patients. For patients it was the recruiter-patient that embodied the “proof of the pudding” that could not be provided by scientific evidence.

Acknowledgements

The research for this article was mode possible through the Netherlands Organisation of Science (NWO-050-32-530) and ESRC (RES-350-27-0002; RES-062-23-0215).