The four themes that emerged were: (i) the perceived benefits of the Internet in the context of the therapeutic relationship (ii) the limitations of the Internet (iii) views on sharing information obtained from the Internet with doctors and (iv) the potential of the Internet for the future.
In the findings that follow a code is used prior to the extracts to indicate the person who is speaking and the group they were part of. The letter 'R' is used to indicate speech by the researcher.
Perceived benefits of the Internet
Information from the Internet was generally presented as supplementing that received in consultations and therefore supporting the therapeutic relationship. Given time limited consultations, the Internet was perceived to be particularly useful for confirming and expanding on information received without 'bothering' the doctor. This is explored in the following extract.
NADHD01 Well yes as this gentleman says sometimes you go to the doctor and when you come out you really don't know what it's all about. If you have access [to the Internet] and you can ask the questions what is it, how is this caused, how is it managed – basic questions and then little sites that you can click off on there to obtain a little bit more information if you wish.
(Diabetes group 4)
Accessing information via the Internet means that it is possible to confirm information that is already 'known' and revisit information.
LHDO6 ... it is back-up information from what we already know. And it's there permanently, whether it's on the screen or downloaded.
(Heart disease group 1)
Websites that provided lists of possible questions to ask the doctor were said to help to make the most of long awaited and time limited consultations, increasing the potential for patient involvement:
LHD07 There was one page on it which was questions to ask your doctor which was one of the things I went looking for and I found somewhere else had represented it much better but as an idea it was really good. Especially when you go to see a consultant and you wait months and months for that sort of thing to happen and your mind is full of all sorts of stuff. It's nice to go in with a written list or prepared list of things to ask.
(Heart disease group 2)
The Internet provides easy access to medical information outside of the consultation. One informant explained how he had used the Internet to search for information about a particular drug so as to engage with the doctor about a previous prescribing decision. This did not appear to be indicative of a lack of faith in, or attempt to undermine, the doctor, but rather a desire to have an informed discussion.
EHD02 Something I've discovered recently for instance is – my mother is on a drug called Seroxat which has been in the papers a lot recently because of the bad side effects and she does have side effects and I'm, I personally am convinced that it's because of this particular drug. Well I was able to look up all the details about that you know, the whys and the wherefores and where it's banned and where it's not banned and then you know we can see the doctor about it and say well, should she, are you quite sure?
(Heart disease group 3)
There was a general awareness on the part of respondents that there were limits to their GP's knowledge. For this reason respondents felt they had a responsibility to search for information.
NAD05 ... I've had to do a lot for meself to find out different things and you know the doctors are not even as much aware. I mean they can't all be experts in the one thing
(Diabetes group 4)
Respondents with Hepatitis C particularly expressed the view that GPs might not be well informed about their condition.
LHCO2 I asked my doctor, my GP a question about Hepatitis C and he quite openly said: 'I have no idea'.
(Hepatitis C group)
Practical advice and experiential knowledge relating to the day-to-day management of conditions and medical procedures was perceived by all groups to be very useful; beyond the doctor's expertise, but nevertheless easily accessible via the Internet.
LHD07 ... it's nice to know that whatever you've gone through or going through that people have been there beforehand and they've picked up information on the way. So that rather than reinventing the wheel it's sharing with other people and there are tips and tricks that you get from them that you just wouldn't get from a GP. Just little practical things.
(Heart disease group 2)
Finally, the ability to access a range of medical opinions, as well as options for medical treatment from other parts of the UK and/or countries was perceived to be useful, as it was suggested that the financial constraints of the NHS might restrict the options presented in consultations.
LHCO3 .... Most people believe that there is some kind of Government, you know, shut your mouth – you know what I mean – it's kind of like the government are keeping it [treatments not available on the NHS] secret because of the impact on the health service – I mean it would devastate the health service if -
LHCO4 Too expensive
LHCO2 Exactly
(Hepatitis C group)
Perceived limitations of the Internet
Even where there was the facility to consult a medical professional over the Internet, it was felt that any advice provided was limited by the fact that it was not based on the individual's medical records and knowledge of their past medical history.
LHD07 Any doctor or GP you ask over the Internet is going to be so, have such limited information they would be very reticent to give you opinions or advice. Their first thing would be to go to your GP or go to your doctor because they've got your full case notes. So if they could get over that barrier it would be useful but it's a big barrier to get over.
R The fact that they wouldn't have information about you?
LHD07 It's like these dial in things you hear on the radio, these sort of radio doctors and telephone doctors you hear, you know 99 times out of 100 what they say is go to your GP.
(Heart disease group 2)
A particular concern was that information obtained via the Internet may not be considered as trustworthy as advice obtained directly from their doctor.
LHD06 I wouldn't trust a computer that much ... any specific information like 'do this' or 'don't do that', because – even though it may be useful, I'd much rather deal with a human being, a doctor
(Heart disease group 1)
In addition, having to write queries as opposed to verbally express them was presented as a possible barrier in terms of the level of difficulty involved in doing so.
EHD04 Yeah and are people articulate enough to be able to put down their question properly in the first place as against speaking it they have got to write it haven't they?
(Heart disease group 3)
Sharing information from the Internet
There were reports that doctors positively encouraged people to search for information about their medical problems and potential treatment options.
LAD02 ... cos sometimes doctors just say to you that: 'Well, I'm going to put you on such-and-such', and recently some of the consultants I've been seeing have said to me: 'Are you Internet friendly – so do you want to go and look this up and then come back and talk to me about it?'
(Diabetes group 3)
Conversely, resistance from doctors to patients bringing information even about their day to day management into the consultation was not only anticipated but also experienced.
R ... say you were doing your blood pressure at home. Which a lot of people do do, then you could put that data into the computer, and the doctor would have that when you see them
LHD06 What your own doctor do you mean?
R Either your GP or your hospital doctor, you could choose
LHD10 I think doctors tend to get annoyed when you start telling them your own self-diagnosis.
(Heart disease group 1)
Respondents generally presented the Internet as a resource that supported and enhanced as opposed to challenged the therapeutic relationship and in keeping with this it was suggested that information found should be checked with the doctor.
LHDO5 As a sensible person ... you should go and check it out with your GP
(Heart group 1)
One of the respondents felt accessing the Internet for information was unnecessary as you could just ask your doctor. Other respondents in the group challenged this, but the fact it was raised demonstrates that not every patient believes the Internet is a useful resource in this context.
EHD04 ... I mean why should a person write a question of a medical nature, a medical enquiry when all they've got to do is go to their own surgery and ask the doctor.
EHD05 Well there are lots of reasons why they would do that, lots of reasons.
(Heart disease group 3)
Future uses of the Internet in health care
Respondents suggested that a possible future use of Internet technology, saving time for both patients and practitioners, was performing automated tasks such as checking if test results are available, or using test results as a basis for informing people of the necessity for an appointment. It was also suggested that ongoing monitoring could be provided over the Internet. There was particular exploration of this by the diabetes groups.
R How would the website then give you an idea of how things were going?
LAD02 Because if I'm diarising over a period of time, it would give you feedback it looks like from the programme, on basically that you would be able to look and to read about how you've done this week, how you've done next week when it's put it all together, 'cos as a process it will do it for you, which is really good and really helpful. As opposed to you taking paper and pen and doing it, and you forget and then you – 'cos I can't remember at the end of the day everything that I've eaten, or whatever it is, and what I've done completely, you know, 'cos my brain's tired and you know, I'm just absolutely just at the end of the tab, and it takes too much. But if I had the programme, and I could just put in, dot in these true things as I went along, at the end of the week it's doing the work for me, calculating and saying: 'You've taken so much exercise, you've had so much insulin, this is what your calorie intake was, or whatever it was, and this is how much', you know – it would help, it would help, I think also it would give you some kind of incentive as well, so as to progress en route. And you could look, and it says on it in printout, so that you could take it to your medical practitioner at the end -
LAD04 Yes, that would be a really good idea.
LAD02 And that would be really useful because then they're sitting there going to you: 'So, how have you got on, and what did you do in the first' – 'I can't remember, I haven't been here for the last three months, or whatever, and you're asking me what did I do for the last three months', you know, and really and truly, I mean half the time when I go to the dietician I know that I'm making up fairytales, right, because I can't remember what I've eaten – I know that I've eaten, yeah, and I've tried some of the things that you told me, but you know, what time I'm eating, and when I'm eating, I can't -
(Diabetes group 3)