Much of the general feedback to BackInfo was positive. People appreciated the fact that different types of information were available in one place. Participants saw the main topics of the website as relevant, although some of them complained that the information was mainly targeted towards the most common age groups and diagnoses. Many participants also complained that information about a number of complementary and alternative treatments were missing from the website.
Differing views of amount of information and language
Most people used the search engine to find information about the effect of treatments for their particular diagnosis. These searches often resulted in a list of ten to twenty links, each concerning a separate treatment. Participants reacted differently to the lists, some appreciating the amount of choice, others finding the list daunting:
Researcher: Do you have any thoughts about this list?
Karin: It's very long, isn't it?
Olav: Yes, but it has to be!
Ellen: It could have been even longer (as far as I'm concerned)!
Several participants emphasised that they were highly motivated to read large amounts of information:
Lisa: But if you're looking for information then you want to find some information! That's our problem, that we don't find it. Then it's better to have a proper description, that there's something there....
Astrid: You have the time to read it, after all!
Lisa: Otherwise you wouldn't be looking for information!
Astrid: When you search in the Internet you jump from room to room and time flies without you realizing it. When there's something you're searching for, you read the information that's of interest. So it's not too much to read twenty lines per theme!
Other participants pointed out that they were just too tired to take in large amounts of information:
Greta: If your back really hurts and you start looking and you see a whole site, then you think "Oh God, I'll be dead before I get through all this!"
For people in these situations, participants suggested a list of "Top Ten Tips" describing "how to move on when you've hit the wall". Participants also suggested presenting the information at different levels of detail based on the amount of experience with back pain and back treatments they had.
Some participants thought that the language was too difficult, one of them suggesting that "we should write as if we were talking to a child". Most participants, however, appeared to understand the information, and comments about the language were mainly tied to the same four or five medical or scientific terms. The term that led to the most comments was "placebo", even though this was linked to the glossary. However, participants did not agree with our suggestion that this term was replaced with the term "dummy medicine". Instead, they wanted us to use both terms, pointing to the need to familiarise themselves with the words used by their doctors and in their medical records:
Elsa: I read about TENS and then these words popped up again that should have been written in Norwegian. (Like "placebo".)
Researcher: I suppose we could drop that term and just write "dummy medicine".
Lisa: On the other hand, these are the sorts of words that get used when you go and get treatment.... It's nice that they get explained. Because when you go to hospital and go to get treatment and stuff then it's those foreign words that get used, and then it's good to know what they mean.
Attitudes to research-based information
Although participants did seem to understand the information, they varied in the extent to which they thought they would use it in decision-making. Participants described how they often made treatment decisions in a context of great pain and despair. Under such circumstances, they often had little energy to seek out written information and were sometimes too desperate to care what the research might have to say. Instead, they often gathered information about treatments through the personal anecdotes of friends and neighbours, and, in most cases, this experience-based information was considered to be more relevant than the evidence-based information:
Jon: This is a really nice site when you're healthy and have some energy. Then you can sort of say "Oh, this works! (..) I'll try that." But when you're very low down, what you have the energy to read is stories from real life, like you have here. How they feel, which treatments they had tried, what happened in practice.
Researcher: If you had heard that the neighbour had had a [successful] treatment and you went to BackInfo and it said that this treatment had no effect, what would you do then?
Karin: I would drop that website and listen to the neighbour.
Some participants did agree that access to the sort of information offered through BackInfo might help them decide which treatments to try first, particularly if it was combined with information about other factors:
Andreas: When the research says that a treatment doesn't work that well, you might not try it because it's also expensive or has too many side effects.
Other participants thought that they would be keener to use research-based information if they were facing a decision about a treatment that they perceived to be risky:
Lisa: I'm critical if they start cutting you. Then I really look into it. If they start cutting you or medication or something. But as far as other treatments are concerned, exercise and stuff (...), then I know that it's not dangerous, so then I think, "Let's give it a try."
Several participants also expressed a lack of trust towards research and researchers in general. This lack of trust appeared to be tied to the fact that research results changed over time and that researchers sometimes disagreed among themselves. Some participants also suspected that the research results could be constructed to serve particular interests:
Ellen: I think, personally that these studies..., well, maybe in two years' time they'll come along with studies that come to different... So I think that ...., I think it's important, but you shouldn't take it too (seriously).
Richard: So a group of researchers have come to the conclusion that (massage) doesn't have much effect. But you can go out on the street and get hold of some other researchers that can prove the exact opposite. (...) We wouldn't have masseuses and acupuncturists that work year in and year out if it didn't help! And it does help back pain patients, I know that from loads of people I've talked to. You can always find researchers who can give you what you want (....).
Some participants described the information in BackInfo as impersonal and cold. While some saw this as a negative trait, one participant found these same attributes to be reassuring:
Karin: I think it's a typical research site, lifeless, there's no warmth. That was my first impression anyway.
Harald: But that type of argument, it reminds me of people who want to go to friendly doctors because they think it's so tiresome to go to arrogant doctors. I'm not that worried about..., that is, what's important for me is that I get the right treatment, or in this case, the right information. Whether it's warm and friendly, well, that can be seductive; it can suddenly make you think that everything they write about is good when it's actually all nonsense.....
The degree to which people were willing to accept and use the research also seemed to depend somewhat on the degree to which this research tallied with their own personal experiences:
Elisabeth: Well, I didn't think there was much point in (that treatment), and if I can get confirmation that it doesn't really give that much effect and this confirms what I myself believe, that's fine. Getting my own opinion confirmed is always nice!
Research as part of the public health system
Most participants had not noticed who was responsible for the site, but assumed when asked that we were somehow connected to the government and the public health services. A number of quotes suggest that participants did not always make very clear distinctions between researchers, health professionals and the public health services:
Greta: I don't believe much in research..... (...) When I think of that discussion that there's been with that German doctor, he's done loads of operations, and he's very disputed, and in Norway they wouldn't approve it. And then..., lots of research comes along and says this and that, so I don't always believe the research, because there are so many doctors that are against things while others are for ..... There's this kind of ... professional disagreement, and I'm a bit afraid of that ...
Several participants also assumed that we had particular attitudes about complementary and alternative therapies. One participant was disappointed by the fact that our list of contributors only included "traditional" health professionals such as physiotherapists and doctors. A number of participants suspected that our lack of information about several alternative treatments reflected a bias towards such treatments and that the information that we did provide about these treatments was also biased:
Researcher: When you look at who is responsible for BackInfo, what do you think? Would you trust this information?
Richard: Well, a lot of doctors don't like alternative (medicine) and of course they have their equals in the public health services. I've gone to a doctor who told me that I would be risking my life going to acupuncture. He tells me that I'm wasting my money and that I risk harming myself. (...)
Researcher: So you think that the public health services are biased against alternative medicine?
Richard: Yes, of course they are. (...) There are loads of countries where they've come much further. In the USA they have (acupuncture) in hospitals. (...)
Researcher: Do the rest of you think that we're less likely to say something positive about alternative medicine?
Eva: I've thought about that! Because getting alternative treatment from the government, from the municipality, it sure wasn't easy.
Jon: We back pain patients, we start out having faith in government systems, it doesn't matter which system it is. And gradually, when the system doesn't manage to help you while you sit there and die, then you have to try something else. And when it turns out that the alternative therapy that the system tells you doesn't work actually does work, then it's completely uninteresting for the person in question to discuss whether it has an effect or a placebo effect, whether it's healing or some medicine that falls from the sky, or whether it's some sort of counter-reaction, as long as you get back to work.
The above statement also illustrates how a question about BackInfo is answered with reference to both the public health services and the government. This apparent lack of distinction may also explain the anger expressed by one participant at BackInfo's presentation of treatments offered through the public health services but that have little effect:
Eva: The thing is, I get quite depressed about the difference being so small. There were four here and five there.... I got quite preoccupied with all these types of treatment that didn't seem to be worth the bother. And I've tried loads of them! And then I started to think about how I've used all that money, I've paid all those doctors, I've bought all those gadgets, one after the other, and I've thought each time that "this time it'll be better!" And I've thought, sort of, "it must be me there's something wrong with". It's been a really tiresome process, I've just got worse! And now I'm thinking that it's no wonder when I see all this (information). It probably wasn't the right thing for me anyway.
Researcher: Are you saying that it was good to find out that it wasn't you there was something wrong with?
Eva: No, no, no! Actually, it makes me quite angry! "What can you believe in?" I think.
Researcher: So it annoys you that the website describes loads of treatments that don't have any effect?
Eva: Yes! I wonder what the point of it is. Why are all these treatments here if they don't work anyway?
The relevance of research results to individual cases
Almost all participants questioned the value of statistical results for themselves as individuals. Participants pointed out that it was not possible to tell whether they would end up in one or the other group. In addition, several participants seemed to feel that the research situation was somehow not quite transferable to "real life":
Astrid: But even if it says that 41 out of 100 get that result and 70 out of 100 get another result I still can't say that I will get that result. But I think it's been explained well.
Karin: But it should be emphasized (on the site) that we're individuals. If something doesn't seem to help when they do it for research it might still help someone. You can't let yourself get stuck.
In addition to our information about the effect of each treatment, we also offered information on what lies behind the research, including the number of trials and participants that the information was based on. Most participants did not look at this information at all. Some participants explained that they were not interested in this type of information, one participant adding that as he had already accepted the website as "solid", there was no reason to double-check what we had based our results on.
Participants who read this information either before or during the group meetings often reacted to what they considered to be low numbers of trial participants. Where numbers were lower than 100, focus group participants were often of the opinion that little weight could be placed on these results:
Jon: If you go to the information on massage, and see the amount of people, there were 51 participants. You're not even close to getting a relevant answer no matter how you look at it!
Richard: It's way too bombastic.
Eva: It's nothing; it's just not good enough.
Participants' response to the personal stories
Harald: I liked the personal stories a lot. I really like reading about real case histories.
The mixed responses to the research-based information stand in contrast to the enthusiasm almost all participants showed for the personal stories of back pain sufferers. Two participants said that they were not interested in the stories and one person actively did not want to read them because she had had "bad experiences with negativity among other back pain sufferers". All other participants praised the stories, finding it helpful and interesting to read how other people coped, and finding comfort in the fact that others had the same experiences. One participant saw the stories as making up for the "coldness" of the front page:
Ellen: I thought about what you were saying about it being a cold front page. I thought that this was very alive. I recognized some of it, and I thought it was a very important part of the information.