Finally, to return to an issue we touched on at the start of this section of the report, our research has shown that patients’ uses of information are built in and around the medical professional-patient relationship. As we discussed earlier, the bulk of the information upon which a person’s status as a patient is based is generated within medical settings, the GP’s surgery, the diagnostic clinic, the operating theatre, the radiography unit, etc. This sort of information is massively consequential. However, as we have also tried to point out, a great
deal of the rest of the information that a patient accesses, has to pass through the medical setting for it to be of use. It has to, in other words, have a bearing on what happens in the medical setting, providing the resources needed to do such things as formulate questions, evaluate treatment options, make informed choices, seek explanations, raise worries, clarify medical instructions received in other medical settings, etc. The medical setting is also a point at which patients will be directed to information resources that are located ‘outside’ the medical professional-patient relationship, and provided by non-medical people in a range non- medical settings. As a result, as well as being information-rich, the medical setting is also something of an ‘information hub’, with the medical professional-patient relationship providing a point around which other forms of information are arrayed. Given the importance of the development and implementation of resources that support patients in exercising informed choices about how they manage their condition, cooperation between information providers and medical personnel is crucial if new resources are to be integrated with normal working practices in the settings within which the resources will be used. If patients know that a particular system is supported by those responsible for their care, and that the system facilitates communication about their condition, it is much more likely to succeed.
However, patients require a number of things from resources if they are to facilitate communication about their condition and not all of these are compatible with one another. Despite attempts in recent times to put the medical professional-patient relationship on a more mutual footing, that relationship remains in important respects an asymmetrical one (see Latour, 1983). As mentioned earlier, the asymmetry arises because the relationship is based upon the technical expertise of the professional and the lack of expertise of the patient. Thus, even if they are ‘partners’, they are certainly not equal partners. Moreover, as we also discussed earlier, the interests of the medical professional and patient are also asymmetrical. The medical professional’s interest in information around a patient’s illness, for example, is primarily technical and work-oriented, whereas the patient’s interest in information is defined by the non-technical demands placed upon them by life with a serious condition. While these interests converge for the most part, they can also diverge and information providers must provide patients with the resources both to work with medical professionals but also to evaluate their treatment within medical settings. Extract eight provides an example:
Extract eight:
M: And from your … I mean, for somebody who does put emphasis on being an informed patient, did you use ehm … how did you find the websites in comparison to the leaflets you were getting?
C: Oh … Some of the leaflets … well the leaflets were more wordy anyway. M: Yeah.
C: And they’d have diagrams … but I mean, yes, you’d learn a bit more … I mean there’s nothing about the chemotherapy treatments or, you know, specific chemotherapy treatments on there … which eh I think they’re about to update some of the leaflets on it … but I suppose they might not want people to know beforehand what all the side-effects are …
M: Right.
C: I mean the trouble is it’s a bit of a drip feed system they operate on … and if you knew everything immediately … ‘Oh this one, you know, can cause heart problems, and this one causes fluid retention, and this one, you know, you can have an allergic reaction to so we need to have a doctor on duty but you’ll have to have it so …” [mimics nervous laughter] ‘Ha, ha, I don’t really want to have it at all’.
M: Yeah, heh.
C: And I think they sort of break it up, ‘Slowly-slowly. Well you only need to know this much so far.’
M: Yeah? And is that the sense that you got when you were eh … actually ehm in face-to-face interaction with consultants and nurses?
C: Oh yeah. I suppose because they can only tell you so much at the time that you can take in. But you definitely get the impression, well I got the impression, that [mimics doctors] ‘That’ll do for now. We’ll tell you the next bit the next bit along.’ M: Yeah.
C: But in the end although they don’t say … they must know what’s the best thing. But I mean I’ve always got my list of questions to ask. And if you’ve got your questions then you can find out what you want to know. And they’re always pleasant if you ask them.
M: And that was something that eh … you did quite a lot wasn’t it, make sure you had questions every time you went into see them?
C: Yeah. And that’s what helped … that you could go and look at things and say ‘Yeah I’m dealing with this and I wanted to know about that’ … if you’ve got the discipline and you ask.
In other words, because what patients want to know and what doctors think patients need to know do not always align, the relationship between medical professionals and information providers has to be close but not too close if the resources they provide are to work effectively for patients.
D. Summary
In this section of the report, we have tried to concentrate on the fact that patient information use is a more complex phenomenon than existing research allows. Beginning with the idea that patient information is a tool, a resource used in further courses of action we then looked at the ways in which information use is defined in the context of an individual’s own condition
and how they choose to manage it. Rejecting the distinction between informed and uninformed patients as a foundational principle for examining patient information, we highlighted the fact that all patients are skilled and competent users of information. This research showed that patients choose to be informed on different matters, the matters most relevant to them. It also showed that within the context of those decisions, patients use a number of strategies to make information work for them. Needless to say, these strategies are not mutually exclusive, but overlapping, brought to bear as situations demand. From our perspective, any information resource, if the resource is to be successful, must support these forms of patient activity and the patterns of information use they produce. In the following section, we examine how well mihealth performed in this regard.