'Ignorance is bliss sometimes': constraints on the emergence of the 'informed patient' ... - 0 views
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Recent work in medical sociology suggests that there continues to be a gap between the partnership and ‘negotiation’ models of practitioner-patient relations and the empirical reality of everyday practice.
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Lupton (1997) has drawn attention to the fact that patients have agency here, too.
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in their interactions with doctors and other health care workers, lay people may pursue both the ideal type ‘consumerist’ and the ‘passive patient’ subject position simultaneously or variously, depending on the context (1997: 373).
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For Lupton, ‘late modernist notions of reflexivity … fail to recognise the complexity and changeable nature of the desires, emotions and needs that characterise the patient-doctor relationship’ (1997: 373).
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He argues that the health care practitioners who participate in these online self-help networks are also experiencing an identity shift, moving from authority figure to facilitator.
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nformation technology and consumerism are synergistic forces that promote an ‘information age healthcare system’ in which consumers can, ideally, use information technology to gain access to information and control their own health care, thereby utilising health care resources more efficiently (2000: 1714, our emphasis).
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Is there a direct link between information access and empowerment?
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Such detailed empirical studies of Internet use can tell us much about the significance of this medium in the everyday lives of specific user groups and about the emergent relations and communities that may accompany such use. Thus, studies of online health communities tell us much about how the Internet can support community building which is valuable and interesting in its own right. They also demonstrate well the point made by science and technology studies (STS) that users of technologies ‘shape’ those technologies to fit their needs and that the context of use, in particular, is central to understanding the significance of such technologies
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(Bijker and Law 1992, MacKenzie and Wajcman 1999, Lie and Sørensen 1996, Silverstone and Hirsch 1992). There is, however, a danger that such work will be interpreted and/or used to imply that the Internet is, in itself, empowering of patients, and it is this type of technological determinism that we wanted to avoid in our own study. In the next section, we explain how we designed our study to do this.
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In order the better to understand how these women located themselves within the landscape of health information, the very first question we asked them was:What, if anything, do you do when you first feel something isn’t quite right with your health?
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Thirty-two women were recruited through a GP practice (family doctor) or gynaecological clinic in a city in the south east of England. Women who were taking, had considered taking, or had recently stopped taking HRT were all considered for inclusion in the study.
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The interview schedule included questions about health information practices in general before going on to ask about HRT-related health information practices.
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Thus, results suggest that our participants access a range of different information sources and media, but the interesting questions remain. How keen are they to become more informed about their health? Does access to information necessarily lead to feelings of empowerment? Does access to the Internet enhance information-related empowerment? Below, we explore the constraints on the emergence of the ‘informed patient’ under three headings: taking responsibility; information literacy; and the medical encounter
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Have you ever looked something up for yourself before going to see a doctor, nurse or other health care practitioner?
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Eighteen of the 32 participants had never looked anything up for themselves before a visit to a doctor or other healthcare practitioner. Eleven of these offered no explanation for this and many seemed surprised by the question.
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Two kinds of explanation were offered by the seven other participants. The first suggested a reluctance to take the kind of responsibility for self-care suggested by the ‘informed patient’ discourse. The feeling here was that it was the doctor's job to know about such matters.
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Thus, we cannot assume that everyone sees the importance of taking on more responsibility for their health, especially where that involves ‘becoming informed’ outside of the traditional medical encounter. This particular group of mid-life women felt either that it was a doctor's job to inform patients about their health or that there would be problems in trying to work in partnership with doctors in the way suggested by the informed patient discourse.
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Becoming informed involves skills and competencies that relate both to the information itself and to the medium used to access that information. Amongst our participants we found women who had very few information literacy skills and others who lacked general computer literacy skills and/or web searching skills. Below, we discuss how lack of competency in these areas can inhibit the emergence of the informed patient identity. To illustrate this point, we compare more and less ‘literate’ participants, some of whom have access only to the more traditional media, others who have access to the Internet as well.
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Information literacy
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Taking responsibility
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Information landscapes
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Recruitment and interview focus
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The Internet and patient empowerment
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Information literacy skills are crucial when searching on the web. Awareness of sources (individual or organisation publishing the information) is one means by which one can begin to assess the validity of the information found on the web. While Marge is our least information-literate Internet user, many others were similarly uninterested in information source and validity issues, displaying low levels of information literacy.
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Clearly, Jane is unwilling to trust the information about dairy products from producers of dairy products but is, at the same time, more than happy to accept what producers of soya products say about the benefits of soya.
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Clearly, whilst medical sites are a signpost to trustworthiness for some, this is not a universal experience.
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In particular, those with an interest in alternative or complementary therapies may well find conventional medical sites restrict and circumscribe their ‘informed choice’, just as some healthcare practitioners were reported to have done in the context of the medical encounter, discussed next.
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The medical encounter
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When discussing the first constraint on the emergence of the informed patient –‘taking responsibility’– we found that 14 of the 32 women had, at some point, actively searched for information about their health prior to a visit to the doctor
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These women were asked whether they disclosed what they already knew. As with those who did not look up information for themselves, there was, amongst the more informed participants, still a great concern about appearing to over-step the boundary between ‘expert’ and ‘patient’ here
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The last example is particularly interesting for the way in which the patient, here, feels the need to protect the doctor from the ‘informed patient’ who she sees as exerting extra pressures on an already busy professional.
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You have to be very careful because they come back with – and I don’t blame them at all – they say, ‘don’t believe what you read in the paper, you’re here with me now and I’m telling you this’. I don’t blame them, because it must be very hard, when you go and say, ‘Oh, I read this in the paper’. It's not easy for them … (Pat).
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Annie shows us that it is perfectly possible to be very engaged with one's own health and informed about treatment options through traditional information media and sources but, at the same time constrained in the full development of an informed patient identity because of a reluctance to challenge the doctor.
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Despite nearly half the women in our sample being willing and able to look things up for themselves prior to visits to healthcare professionals, in no instance did it seem to be the case that disclosing what was already known about their particular health problems and their treatments was a completely straightforward process for these women.
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Exceptions might be the one woman who stated that she would feel confident disclosing to a complementary therapist (though not to her GP), and another who felt that ‘a lot of doctors now know that some people know their bodies better than what [the doctors] do’ and that things were, therefore, getting better over time. In general, however, for this particular group of mid-life women, it seems that the boundary between the expert healthcare professional and the patient is still fairly robust.
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A second constraint on the emergence and enactment of the informed patient identity has to do with skills and competencies in what we might call ‘information literacy’. These skills involve general awareness of where to find information, information retrieval, understanding the context of the information being provided, and interpretation and communication of that information in the context of health-care decision-making. This point becomes all the more pertinent when we come to look at Internet use. Although almost half of our participants had used the Internet for accessing health information, we found that the search strategies used were very unsystematic. In addition, we found, as did Eysenbach and Köhler (2002) in their qualitative study of health information searching on the Web, there was almost no awareness of who or what organisation was publishing the information being accessed. Indeed, for some, the information ‘media’ and ‘source’ were collapsed and the Internet was itself considered a source of health information and, for many, a good one at that.
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Conclusions
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First, many patients do not want to take responsibility or seek out information for themselves – they are more than happy to trust their GPs and leave decisions to them. There may be many different reasons for this as Lupton (1997) has suggested but it is important that the patient perspective is acknowledged nevertheless.
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The third constraint in the emergence of informed patients and partnership relations comes from the apparent reluctance of practitioners to take on this new role
