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?
Not one woman, in reply to this question, stated that she sought information via the Internet as a first move. Results suggest that most women still rely heavily on their doctors as a first port of call for health advice and information. This was confirmed in responses to a subsequent question on other information sources used regularly, where GPs were confirmed as being the most important source of health information and advice for 31 of the 32 participants. Family members, usually women, were the second most often cited source, by 23 of the women. Friends, pharmacists and alternative healthcare practitioners were mentioned by 22 participants.
Again, as a result of prompting, the following information ‘media’ (in order of importance) were cited as having been used by participants to access health information at some point in the past: the Internet; women's and health magazines; television; self-help books; newspapers; radio; NHS Direct; and ‘other’ such as leaflets from pharmacists or those that come with drugs.
Of the 32 women interviewed, 19 had access to the Internet. Of these, 16 had actually used the Internet at some point, some more regularly than others. Nearly all users (15 out of 16) had used the Internet to access health information at some time, which appeared to be one of the most popular uses of the Internet outside work, with leisure/hobbies, holiday and travel information and finances also being important. Twelve Internet users accessed the Net at home and three accessed it elsewhere (one only had work access, one preferred work access as her son dominated the home PC, and one had regular access through her daughter's friend at her daughter's friend's home). Of these 15 users, three had sought information about the health of others, but not about themselves.
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.
The informed patient discourse and its sociological equivalent – the ‘reflexive consumer’– assumes that individuals want to take more and more responsibility for their own health and that this involves active information searching, above and beyond the traditional visit to the doctor. In order to assess how far our participants engaged in such active information searching, we therefore asked:
Have you ever looked something up for yourself before going to see a doctor, nurse or other health care practitioner?
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. 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. This view was evidenced by comments such as: ‘that's what they’re trained for’ (Helen); ‘I would just trust a doctor’ (Betty); and ‘I wouldn’t look in anything, I’d just go by what the doctors tell me. For myself I wouldn’t look anything up. Ignorance is bliss sometimes!’ (Christine). The second kind of explanation suggested a different kind of constraint on the emergence of the ‘informed patient’ identity. Here, there appeared to be a fear of being seen to challenge the doctor: ‘it might be like telling your granny how to suck eggs really, he might not want to know’ (Annie); and ‘They don’t like to be told you’ve got X. They like to tell you that you’ve got X’ (Caroline).
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. We return to this discussion later when we discuss womens’ accounts of information exchange in the medical encounter.
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.
Annie is interesting to us because, whilst she claimed never to have looked something up before a visit to her doctor, she is clearly an avid information seeker and literate in relation to the health information she accesses through traditional media and sources. At the time of the interview, Annie did not own a computer and had never accessed the Internet herself.
Annie told us how she clipped and saved articles from both tabloid and quality newspapers and magazines, sent off for additional information and collected leaflets from her doctor's practice, from hospital waiting rooms, from the pharmacist, from health food shops and from prescriptions. She regularly bought health books, and used bookshops as a sort of reference library (looking things up in books in shops rather than going to a library). She watched things on television if they caught her eye. She bought popular health magazines every couple of months. Annie talked with friends, colleagues and family, especially her sister, about health matters. She was discerning in her use of information, explaining that when she received unsolicited ‘junk mail’ on health matters, she tended to ignore it, thinking they were trying to sell her something.
Annie had accessed a range of traditional information media to inform herself about the pros and cons of HRT and the use of alternative herbal remedies to treat menopausal symptoms. In addition, when very concerned about a specific treatment she had been prescribed, she had enlisted a friend with access to the web to help her find the precise information she needed. She represents our more information-literate participants.
In contrast to Annie, Marge appeared to be far less information literate and really rather uninterested and disengaged from debates about HRT and related health matters. Marge was in her early 50s at the time of the interview. She lived alone in state-subsidised housing, had four children and two grandchildren. She had trained and worked as a nurse but was retired on health grounds. She was registered disabled. She had been taking HRT for about four years since being diagnosed with osteoporosis. She had had a hysterectomy in 1981 but was not offered HRT at the time and was uninterested in why that might have been. She was unaware of any alternative treatments for osteoporosis and had not looked for any.
All Marge's information and knowledge about HRT came either from specialists or her GP. Her first port of call when concerned about her health was always her GP, whom she trusted absolutely. She did not look up health issues in self-help books which she thought can be ‘frightening’. She did not actively look for health information in traditional media but might read/watch something if she noticed it. She has had home Internet access, via Sky, for three to four years but rarely used it for health-related matters. Her main use was for accessing digital photos of her granddaughter who lived in another part of the country. She reported using the Internet for health information when she was first diagnosed with osteoporosis but could remember little about this search other than that her son-in-law, who worked ‘in computers’, had given her a specific web site to go to. Marge showed little awareness of the sources of information (publisher, organisation, etc.) she found on the web and expressed no interest in issues of information validity or quality, tending to trust whatever she found there, regardless of source. She identified no particular advantage to finding information online and complained about getting ‘too much information’ with no possibility of asking anyone any questions.
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.
When asked about source, some clearly felt that the Internet was itself the source, and a trustworthy one at that. Others, whilst recognising that the web, in particular, offered access to many different sources of information, still seemed relatively unaware of the importance of checking the source. For one woman, repetition was a sufficient indicator of information validity:
. . . there are so many different sources that you can go to, so many different sites and you are able to compare them with and you find, ‘oh yes it said that on the last site so that must be right’ (Sharon).
Perhaps surprisingly, there was little awareness of commercial interests on the Internet with only two participants being overtly critical of commercial sites. Jane was one of them. However, Jane demonstrated a rather low level of information literacy being apparently unaware that she was, herself, making use of what others would consider commercially-biased information. As a vegetarian, she was interested in using the web to find alternatives to dairy products as a source of calcium. She explained her search strategy:
I mean you could put in there ‘dairy products’ or something, or you could go the opposite way like I do … I could look up ‘soya’.
Jane explained how this search strategy took her to the site of a well-known soya products company and that here she found out about ‘the benefits of soya in your diet’. She continued:
. . . so you go backwards actually, you find out the benefits, or not the benefits of dairy produce, by looking up something that's actually opposite. . . . I mean you could put in ‘dairy products’ but it might not tell you what you want to know, so you think there might be another way, so I go round the back door and go to ‘soya milk’ and then it tells you about that.
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. As she says herself at one point, a particular site ‘might not tell you what you want to know’. For her, this was confirmation that many humans are not able to tolerate cow's milk and that soya is a good substitute.
Perhaps surprisingly, only four participants thought medical sites more trustworthy than other sites. Two women who worked in the health sector specifically mentioned using medical sites as their preferred sources of health information but both seemed relatively lacking in confidence about their use of the web. Carol had access to the Internet both at home and at work. She spoke about looking for something on abortion with a colleague at work and looking for information about a specific health problem of her own. When asked about specific sources she accessed, she described herself as ‘quite discerning’ in her use but was unable to name any sites she particularly trusted. Barbara, who worked in health administration, mentioned using Medline, the medical database, but disliked computers and had few computer or web-related skills and always worked through an intermediary – a health librarian.
Another woman who claimed that she trusted medical sites above others also failed to name any specific sites she used, and seemed unaware of the existence of NHS online information services:
If there was, probably, an NHS site or something like that on there, that's probably the one I’d go to first, because you trust the NHS. I don’t know why, but you do! Because that's what they’re there for (Phoebe).
These Internet users contrast well with our most information-literate user – Janet, who worked in the information profession. Janet had been prescribed HRT following a hysterectomy but had reacted badly to it and had ceased taking it. She used the Internet to find out about alternatives to HRT, among other things. She described her web search strategy:
I go straight to a search engine and put in some terms and in that way then you get the mix of sources that you might want to go for. You’re not just targeting medical journals for example and that's not what I want to do. I want to find more of a serendipity kind of approach really and see what comes up and then skim through it because there's usually thousands and thousands but just do it that way.
Janet understood that most people would probably be more trusting of medical sites but explained that she was more sceptical, as she was aware of medical links with the pharmaceutical industry:
I know what the conventional thinking is which is that something in the British Medical Journal or something is meant to be reliable – its backed up by conventional research. Then the other me says ‘that's funded by pharmaceutical companies, they’ve got an axe to grind, they know what they want and there are other natural things that you can do’ and so I don’t consider either more reliable. I consider all of it.
Clearly, whilst medical sites are a signpost to trustworthiness for some, this is not a universal experience. The same sign will be ‘read’ or interpreted quite differently by different people. 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.
The medical encounter
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. 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. The following examples illustrate this point well:
I wait … I’m old-fashioned. I go in for them to tell me what's wrong with me … I wouldn’t teach them how to do their job, I would defer to their greater knowledge on whatever subject (Peggy).
No, because I think he's got to make his own diagnosis. It's not very helpful if I go in there and say, ‘Look, I feel that I have –’ I think that's very inappropriate (Carol).
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).
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. Clearly, there is a distinction to be made between informing oneself about one's specific health conditions and treatments and being prepared, or feeling able, to disclose what one has found out to one's doctor. This point is supported by our analysis of participants’ accounts of medical encounters during their HRT decision-making.
First, we return to Annie whom we have described as information literate and highly engaged and motivated to take responsibility for her health. However, when it came to her relationship with doctors she appeared not to perform the informed patient identity at all. In the interview, she mentioned, many times, her concern about the weight gain which, according to women's ‘lay knowledge’, is widely thought to be caused by HRT. She claimed, however, to have been ‘reassured’ by her doctor when told that menopausal women on HRT gain less weight, on average, than those not on HRT. Despite being very active in relation to information, Annie was very reluctant to engage with her doctor about this. She is clearly slightly intimidated by doctors and claims she would be more likely to disclose what she knows to an alternative/complementary practitioner because ‘they are not on such a high level’ as medical professionals. 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.
Barbara is a good example of participants who seem to have been denied their right to make an ‘informed choice’ about HRT. She describes being given an implant following a hysterectomy. She told us that she understood that she had no choice – if she did not take it, her doctor told her, she would develop osteoporosis. She suffered many ill effects, including migraines, from the HRT and yet claims she was told nothing about the possible negative side effects, only later discovering that oestrogen is linked to migraines. After trying many different HRT preparations, Barbara eventually came off it altogether, citing migraines and weight gain as the main reasons. Barbara described her experiences of trying to share information with doctors:
I kind of researched it a little bit myself, looked it up, came up with suggestions and they don’t like it or they’ll say ‘well, you might have heard that, you might have looked that up but that's not the case. The case is this’. And you can see them getting uptight, shoulders going up, arms crossing … I mean they might be right sometimes, I’m not saying they’re wrong, they might well be right but they’re not open. It's a closed door all the time, It's closed. It's black and white and you have got to be out of that [place] as quick as possible . . . there is no negotiation.
Other women described feeling similarly dismissed when seeking to become more actively engaged in decision-making. Liza was concerned about being prescribed HRT after only a 10-minute consultation, particularly as her sister had died of breast cancer. She took the prescription and had it filled but never took the pills. She subsequently consulted a colleague at work (a nurse) about alternative ways of taking HRT. She had been offered only pills or patches but wanted to explore nasal spray and cream options so suggested this to the doctor:
I asked if I could have the creams and he just said, ‘no’ because nobody else had asked for them, so they’d never prescribed them, so they weren’t sure of their efficacy.
I decided not to use anything … In the end [I] came away with a prescription which I didn’t use.
In Liza's story, it appears no-one was empowered. Liza felt that she was denied her right to an ‘informed choice’ and her doctors failed to get the compliance they sought when prescribing HRT.
Another woman, Sharon, described how she was concerned that taking HRT might well be making her fibroid grow. She had found this information in a book she had obtained from her local library and took this knowledge to her GP, who dismissed her concerns. She never did find out if there was any relationship between HRT and fibroid growth but believes that prevarication and uncertainty on the part of her doctor resulted in an eventual hysterectomy to remove the fibroid growth. Sharon was frustrated about her attempts to engage more fully with her GP.
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. 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.