How the internet affects patients' experience of cancer: a qualitative study
http://www.100md.com
《英国医生杂志》
1 DIPEx Research Group, Department of Primary Health Care, University of Oxford, Institute of Health Sciences, Oxford OX3 7LF
Correspondence to: S Ziebland Sue.ziebland@dphpc.ox.ac.uk
Abstract
The internet is changing the way that people learn about health and illness. Health sites and discussion lists are among the most popular resources on the web.1 This increase in public access to health information has been welcomed but is often hedged with concerns.2 3 These include that the public may be prey to unscrupulous marketing, that public expectations may outstrip provision,4 the poor quality of much of the information, and the danger of an "inverse information law," whereby those who are in the greatest need of information about preventable or treatable conditions are least likely to have access to new technologies. However, others believe that wider access to medical information is inevitable and likely to encourage a balanced encounter between patient and health professional and to increase the appropriate use of medicine.5 6
Despite awareness of the potential impact of new information technologies on the roles and relationships of patients and doctors,7 little empirical research has been done on how people with a serious illness diagnosed use information from the internet. In one of the few qualitative interview studies of internet use among people with a serious illness, Reeves showed why people with HIV infection or AIDS use the net: to seek help, make treatment decisions, research information, make social connections, and seek alternative therapies, and for advocacy, escape, and prevention.8 There are no comparable published studies of people with cancer, and data about their information needs are contradictory.9 10
We know little about what it means to patients to have access to health information on the internet, and the subject is well suited to qualitative inquiry.11 We therefore explored how 175 men and women aged 18-83 with cancer diagnosed in the previous 10 years describe to what extent they used cancer information on the internet. We studied whether participants sought internet information about their cancer and how they perceived and used this information. We identify a broad range of uses and explore how the experience of cancer is being transformed for those with internet access.
Methods
Why the internet?
The need for health information is not novel, but respondents with access to the internet talked about it having distinctive and appealing characteristics. These included privacy and 24 hour availability:
"So many people have computers nowadays, you haven't actually got to leave your house, it doesn't matter how you're feeling. You don't even have to get dressed; you can just, you know, log on and you can get the information. Which I think is going to do absolutely nothing but help people." (Man with bowel cancer)
Others noted that using the internet removes the embarrassment of face to face or telephone interactions. This feature seemed to appeal particularly to young men who might be worried about their health but reluctant to visit a doctor:
"It's so personal because... it's your body, but you have to go somewhere. What better place to go than—well certainly in my circumstances, where I have a computer at home that I can switch on, in total privacy. I don't need to feel that I'm asking a dumb question. I don't need to feel that I have to ask all the right questions first time round." (Man with testicular cancer)
People may find it hard to predict when they will want to access different sorts of information about their health. With the internet, they can search for different types and levels of information as and when needed. The following excerpts show how the timing of people's need for information can differ greatly (see also quote by respondent TC07 in box 2):
"It's been helpful knowing where to look and being able to sort of follow the evidence and so on, but now I've reached the stage where I'm not looking any more. It kind of comes and goes; to begin with I wanted a whole lot of information, now I feel perhaps I don't want to know too much and I just want to try and keep going and not think too closely about what might happen." (56 year old woman with breast cancer, one year since diagnosis)
"I found I became very interested in it afterwards. Like, I'd say, after that first year. Like I started to want to ask different sort of questions and know what it looked like and that sort of thing; I was left thinking `What was that thing?'" (33 year old woman, five years since diagnosis)
Who uses the internet?
The table shows how many participants in each of the five samples used the internet, either directly or via a friend or family member. Internet use was reported most often by men with testicular cancer and least often among the generally older patients with prostate or bowel cancer. Women with breast cancer were among the highest personal users of the internet, probably because many information and support resources for this disease are available on the internet.
The interviews did not explore the reasons why participants did not use the internet, but among such comments that were made the lack of home access and not being familiar with computers were the commonest reasons. A few respondents said that they thought they might be overwhelmed with information, were unconvinced that there is anything useful on the web, or—like the woman quoted above—were concerned that they might find out things that they preferred not to know. Some (particularly the older people) were keen to point out that they trusted their doctors and nurses to give them all the information they needed.
Reasons why the internet is used
Box 1 summarises a thematic analysis of the many ways people described using the internet throughout diagnosis, treatment, and long term and short term follow up. Participants in all five cancer studies talked about using the internet to understand the diagnosis, find information about treatments, learn about living with cancer, and gain support from others. The extracts in box 2 show how the internet was used to help patients express treatment preferences and supplement their consultations. Box 3 shows examples of use of the internet for social support, living with cancer, and campaigning to raise awareness.
How the internet is changing patients' experience of cancer
We identified two distinct ways in which respondents used the internet to transform roles and change involvement in health care—to covertly question their doctors' advice and to display themselves (to researchers, friends, family, and health professionals) as competent social actors despite serious illness.
Covert questioning
Patients described using the web to check up on their doctor's responses and advice at all stages, from the recognition of symptoms through recommendations for treatment and follow up. Sometimes they looked for information after being given contradictory advice or realising that their doctors found it hard to keep up with a rapidly changing subject. The internet also enables people to investigate the expertise and reputation of a hospital and staff and any evidence of "postcode rationing." As the extract from respondent BC41 (box 2) shows, searches on the internet may be used after treatment for reassurance that optimal treatment was given. Other respondents identified treatments they preferred (PC42, CC19) and options that they suspected they would not have been offered (TC05). People differ in how they handle the information they have gained and how it affects their relationship with their doctors. However, the fact that this "checking up" can be achieved covertly without a doctor's knowledge may avoid threats to "face" that could endanger the doctor-patient relationship and risk unnecessary conflict.17 18
Box 1: When and why cancer patients use the internet
Before visiting their doctor—To discover the possible meaning of symptoms
During investigations—To seek reassurance that the doctor is doing the right tests, to prepare for results, to improve the value of the consultation, to avoid esprit d'escalier
After the diagnosis—To gather information about the cancer (including information that is "difficult" to ask about directly), to seek advice about how to tell children, to contact online support groups, to seek second opinions, to make sense of the stages of the disease, to interpret what health professionals have said, to tackle isolation
When choosing treatments—Information about treatment options and side effects, experimental treatments, research, and alternative and complementary treatments
Before treatment—To find out what to take to hospital, what will happen, what it will be like, what to expect of recovery, how to identify and to prepare questions to ask the doctors
Short term follow up—Information about side effects, reassurance about symptoms, advice about diet, complementary treatments, advice on benefits and finances, to check that the treatment was optimal, perceived therapeutic benefits
Long term follow up—To share experience and advice, contact support groups and chat rooms, to campaign about the condition, to make anonymous inquiries
Displaying competence
Another way that the internet is changing people's relationship with their illness is that they can gain, maintain, and display familiarity with a remarkable body of medical and experiential knowledge about their illness. Radley and Billig have pointed out that "being a good patient means having to fulfil a sociologically ambivalent position. The patient must appear to be more than a patient, a display of healthiness, or normality is also required for the individual to appear worthy of receiving the entitlements."19
The ability to access a wide range of disparate information on the internet, coupled with the opportunity to present themselves as technically proficient and discriminating users of such information, enabled respondents to display a modern form of competence and social fitness in the face of serious illness. Indeed, the following quote suggests that there may almost be an obligation to seek information:
"We have one very big advantage... and that is called the world wide web. Now I use Yahoo... you go to Yahoo, and you type in testicular cancer, and I guarantee you that for the next two weeks you'll be looking at every site that is different. You have people's experiences, you have drug information, you'll be able to read papers that are published on the web by some of the most eminent doctors around. There is no excuse these days—if you haven't got a computer go down to an internet cafe—there is no excuse whatsoever for not finding out about testicular cancer or all the other things... The information technology breakthrough of having the internet available is just unreal. You know, we're very lucky because we're at the dawn of something that is quite remarkable... so there is really no excuse for not becoming totally aware of testicular cancer." (50 year old man with testicular cancer diagnosed in 1992)
If competent patients seek information about their condition and question the treatment they have been offered does this imply that patients who do not do so are being negligent? Although this view was never stated in the interviews, the negative consequences of not doing one's own research were regularly mentioned in the accounts. Examples in box 2 include respondent CRC16, who sought a second opinion when told that a stoma was inevitable and warned that doctors have neither the time nor expertise to be able to provide all the necessary information, and PC42, whose own research identified brachytherapy as the best treatment for his prostate cancer and who explained that specialist advice is too compartmentalised and unbalanced to help decision making. A young woman with cervical cancer (CC19) found an experimental cryopreservation treatment via the internet. Though she was aware that there was no guarantee this would work, she was keen to preserve her fertility and chose to go to another hospital for the treatment. TC29 pointed out that finding one's own information can help one to plan for the consultation and identify appropriate questions, while lack of planning may result in suboptimum consultations and frustrating esprit d'escalier ("an apt retort or clever remark that comes to mind after the chance to make it has gone," Concise Oxford Dictionary).
Concerns about the internet
Not everyone we interviewed who had accessed the internet described it as an unalloyed bounty. Several stressed the need to be wary or to check information by comparing it from different sources. No patients reported having been misled by inaccurate material themselves, which was probably evidence of distancing: in their accounts participants distanced themselves from other, less discriminating users of the internet (see BC33, box 3). Other participants explained that they preferred to avoid certain types of information—for example, cancer survival data:
"Um, only about two weeks ago was it the Audit Commission produced a document on patients' cancers, so I had a look at that on the internet, and it gave the survival rates for different types of cancer—and for cervical cancer it is about 62%, something like 62%-64% which frankly came as a real shock to me... The problem with finding out about cancer is you're into medical statistics, statistics about death, and you don't have the means of being able to cope with that. At least I didn't." (43 year old woman one year since diagnosis of cervical cancer)
Sometimes websites' information was too all encompassing for British sensibilities, as suggested by this man with bowel cancer:
"The Americans, their websites, they give you everything. They tell you which prayer group to go to at the beginning and the end. They tell you which place to go on holiday, you know. They tell you which muffin to make life easier—you know, your constipation. And, uh, if you would like to dial and ring so-and-so they'll tell you all about their situation."
Discussion
Eaton L. Europeans and Americans turn to internet for health information. BMJ 2002;325: 989.
Eysenbach G, Powell J, Kuss O, Eunryoung S. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA 2002;287: 2691-700.
Eng TR, Maxfield A, Patrick K, Deering MJ, Ratzan SC, Gustafson DH. Access to health information and support: a public highway or a private road? JAMA 1998;280: 1371-5.
Coiera E. The internet's challenge to health care provision. BMJ 1996;312: 3-4.
Grol R. Foreword. In: Edwards A, Elwyn G, eds. Evidence based patient choice. Oxford: Oxford University Press, 2001.
Muir Gray JA. The resourceful patient. Oxford: eRosetta Press, 2002.
Hardey M. Doctor in the house: the internet as a source of lay health knowledge and the challenge to expertise. Sociol Health Illn 1999;6: 820-35.
Reeves P. How individuals coping with HIV/AIDS use the internet. Health Educ Res 2001;16: 709-19.
Leydon G, Boulton M, Moynihan C, McPherson K. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 2000;320: 909-13.
Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001;84: 48-51.
Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet 2001;358: 397-400.
Herxheimer A, McPherson A, Miller R, Shepperd S, Yaphe J, Ziebland S. A database of patients' experiences (DIPEx): new ways of sharing experiences and information using a multi-media approach. Lancet 2000;355: 1540-3.
Coyne IT. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs 1997;26: 623-30.
Pope C, Ziebland S, Mays N. Qualitative research in health care: analysing qualitative data. BMJ 2000;320: 114-6.
Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. London: Sage, 1990.
Marshall MN. Sampling for qualitative research. Fam Pract 1996;13: 522-5.
Goffman E. On face work: an analysis of ritual elements in social interaction. Psychiatry 1955;18: 213-31.
Jadad AR, Rizo CA, Enkin MW. I am a good patient, believe it or not. BMJ 2003;326: 1293-5.
Radley A, Billig M. Accounts of health and illness: dilemmas and representations. Soc Health Illn 1996;2: 220-40.
Cant S, Sharma U. A new medical pluralism. Alternative medicine, doctors, patients and the state. London: UCL Press, 1999.
Stephenson FA, Britten N, Barry CA, Bradley CP, Barber N. Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice? Soc Sci Med 2003;57: 513-27.
Mead N, Varnam R, Rogers A, Poland M. What predicts primary care patients' interest in the internet as a health resource? A questionnaire study. J Health Serv Res Policy 2003;8: 33-9.
Cline RJ, Haynes KM. Consumer health information seeking on the internet: the state of the art. Health Educ Res 2001;16: 671-92.
Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an internet site? A qualitative study of information needs. Patient Educ Couns (in press).(Sue Ziebland, senior rese)
Correspondence to: S Ziebland Sue.ziebland@dphpc.ox.ac.uk
Abstract
The internet is changing the way that people learn about health and illness. Health sites and discussion lists are among the most popular resources on the web.1 This increase in public access to health information has been welcomed but is often hedged with concerns.2 3 These include that the public may be prey to unscrupulous marketing, that public expectations may outstrip provision,4 the poor quality of much of the information, and the danger of an "inverse information law," whereby those who are in the greatest need of information about preventable or treatable conditions are least likely to have access to new technologies. However, others believe that wider access to medical information is inevitable and likely to encourage a balanced encounter between patient and health professional and to increase the appropriate use of medicine.5 6
Despite awareness of the potential impact of new information technologies on the roles and relationships of patients and doctors,7 little empirical research has been done on how people with a serious illness diagnosed use information from the internet. In one of the few qualitative interview studies of internet use among people with a serious illness, Reeves showed why people with HIV infection or AIDS use the net: to seek help, make treatment decisions, research information, make social connections, and seek alternative therapies, and for advocacy, escape, and prevention.8 There are no comparable published studies of people with cancer, and data about their information needs are contradictory.9 10
We know little about what it means to patients to have access to health information on the internet, and the subject is well suited to qualitative inquiry.11 We therefore explored how 175 men and women aged 18-83 with cancer diagnosed in the previous 10 years describe to what extent they used cancer information on the internet. We studied whether participants sought internet information about their cancer and how they perceived and used this information. We identify a broad range of uses and explore how the experience of cancer is being transformed for those with internet access.
Methods
Why the internet?
The need for health information is not novel, but respondents with access to the internet talked about it having distinctive and appealing characteristics. These included privacy and 24 hour availability:
"So many people have computers nowadays, you haven't actually got to leave your house, it doesn't matter how you're feeling. You don't even have to get dressed; you can just, you know, log on and you can get the information. Which I think is going to do absolutely nothing but help people." (Man with bowel cancer)
Others noted that using the internet removes the embarrassment of face to face or telephone interactions. This feature seemed to appeal particularly to young men who might be worried about their health but reluctant to visit a doctor:
"It's so personal because... it's your body, but you have to go somewhere. What better place to go than—well certainly in my circumstances, where I have a computer at home that I can switch on, in total privacy. I don't need to feel that I'm asking a dumb question. I don't need to feel that I have to ask all the right questions first time round." (Man with testicular cancer)
People may find it hard to predict when they will want to access different sorts of information about their health. With the internet, they can search for different types and levels of information as and when needed. The following excerpts show how the timing of people's need for information can differ greatly (see also quote by respondent TC07 in box 2):
"It's been helpful knowing where to look and being able to sort of follow the evidence and so on, but now I've reached the stage where I'm not looking any more. It kind of comes and goes; to begin with I wanted a whole lot of information, now I feel perhaps I don't want to know too much and I just want to try and keep going and not think too closely about what might happen." (56 year old woman with breast cancer, one year since diagnosis)
"I found I became very interested in it afterwards. Like, I'd say, after that first year. Like I started to want to ask different sort of questions and know what it looked like and that sort of thing; I was left thinking `What was that thing?'" (33 year old woman, five years since diagnosis)
Who uses the internet?
The table shows how many participants in each of the five samples used the internet, either directly or via a friend or family member. Internet use was reported most often by men with testicular cancer and least often among the generally older patients with prostate or bowel cancer. Women with breast cancer were among the highest personal users of the internet, probably because many information and support resources for this disease are available on the internet.
The interviews did not explore the reasons why participants did not use the internet, but among such comments that were made the lack of home access and not being familiar with computers were the commonest reasons. A few respondents said that they thought they might be overwhelmed with information, were unconvinced that there is anything useful on the web, or—like the woman quoted above—were concerned that they might find out things that they preferred not to know. Some (particularly the older people) were keen to point out that they trusted their doctors and nurses to give them all the information they needed.
Reasons why the internet is used
Box 1 summarises a thematic analysis of the many ways people described using the internet throughout diagnosis, treatment, and long term and short term follow up. Participants in all five cancer studies talked about using the internet to understand the diagnosis, find information about treatments, learn about living with cancer, and gain support from others. The extracts in box 2 show how the internet was used to help patients express treatment preferences and supplement their consultations. Box 3 shows examples of use of the internet for social support, living with cancer, and campaigning to raise awareness.
How the internet is changing patients' experience of cancer
We identified two distinct ways in which respondents used the internet to transform roles and change involvement in health care—to covertly question their doctors' advice and to display themselves (to researchers, friends, family, and health professionals) as competent social actors despite serious illness.
Covert questioning
Patients described using the web to check up on their doctor's responses and advice at all stages, from the recognition of symptoms through recommendations for treatment and follow up. Sometimes they looked for information after being given contradictory advice or realising that their doctors found it hard to keep up with a rapidly changing subject. The internet also enables people to investigate the expertise and reputation of a hospital and staff and any evidence of "postcode rationing." As the extract from respondent BC41 (box 2) shows, searches on the internet may be used after treatment for reassurance that optimal treatment was given. Other respondents identified treatments they preferred (PC42, CC19) and options that they suspected they would not have been offered (TC05). People differ in how they handle the information they have gained and how it affects their relationship with their doctors. However, the fact that this "checking up" can be achieved covertly without a doctor's knowledge may avoid threats to "face" that could endanger the doctor-patient relationship and risk unnecessary conflict.17 18
Box 1: When and why cancer patients use the internet
Before visiting their doctor—To discover the possible meaning of symptoms
During investigations—To seek reassurance that the doctor is doing the right tests, to prepare for results, to improve the value of the consultation, to avoid esprit d'escalier
After the diagnosis—To gather information about the cancer (including information that is "difficult" to ask about directly), to seek advice about how to tell children, to contact online support groups, to seek second opinions, to make sense of the stages of the disease, to interpret what health professionals have said, to tackle isolation
When choosing treatments—Information about treatment options and side effects, experimental treatments, research, and alternative and complementary treatments
Before treatment—To find out what to take to hospital, what will happen, what it will be like, what to expect of recovery, how to identify and to prepare questions to ask the doctors
Short term follow up—Information about side effects, reassurance about symptoms, advice about diet, complementary treatments, advice on benefits and finances, to check that the treatment was optimal, perceived therapeutic benefits
Long term follow up—To share experience and advice, contact support groups and chat rooms, to campaign about the condition, to make anonymous inquiries
Displaying competence
Another way that the internet is changing people's relationship with their illness is that they can gain, maintain, and display familiarity with a remarkable body of medical and experiential knowledge about their illness. Radley and Billig have pointed out that "being a good patient means having to fulfil a sociologically ambivalent position. The patient must appear to be more than a patient, a display of healthiness, or normality is also required for the individual to appear worthy of receiving the entitlements."19
The ability to access a wide range of disparate information on the internet, coupled with the opportunity to present themselves as technically proficient and discriminating users of such information, enabled respondents to display a modern form of competence and social fitness in the face of serious illness. Indeed, the following quote suggests that there may almost be an obligation to seek information:
"We have one very big advantage... and that is called the world wide web. Now I use Yahoo... you go to Yahoo, and you type in testicular cancer, and I guarantee you that for the next two weeks you'll be looking at every site that is different. You have people's experiences, you have drug information, you'll be able to read papers that are published on the web by some of the most eminent doctors around. There is no excuse these days—if you haven't got a computer go down to an internet cafe—there is no excuse whatsoever for not finding out about testicular cancer or all the other things... The information technology breakthrough of having the internet available is just unreal. You know, we're very lucky because we're at the dawn of something that is quite remarkable... so there is really no excuse for not becoming totally aware of testicular cancer." (50 year old man with testicular cancer diagnosed in 1992)
If competent patients seek information about their condition and question the treatment they have been offered does this imply that patients who do not do so are being negligent? Although this view was never stated in the interviews, the negative consequences of not doing one's own research were regularly mentioned in the accounts. Examples in box 2 include respondent CRC16, who sought a second opinion when told that a stoma was inevitable and warned that doctors have neither the time nor expertise to be able to provide all the necessary information, and PC42, whose own research identified brachytherapy as the best treatment for his prostate cancer and who explained that specialist advice is too compartmentalised and unbalanced to help decision making. A young woman with cervical cancer (CC19) found an experimental cryopreservation treatment via the internet. Though she was aware that there was no guarantee this would work, she was keen to preserve her fertility and chose to go to another hospital for the treatment. TC29 pointed out that finding one's own information can help one to plan for the consultation and identify appropriate questions, while lack of planning may result in suboptimum consultations and frustrating esprit d'escalier ("an apt retort or clever remark that comes to mind after the chance to make it has gone," Concise Oxford Dictionary).
Concerns about the internet
Not everyone we interviewed who had accessed the internet described it as an unalloyed bounty. Several stressed the need to be wary or to check information by comparing it from different sources. No patients reported having been misled by inaccurate material themselves, which was probably evidence of distancing: in their accounts participants distanced themselves from other, less discriminating users of the internet (see BC33, box 3). Other participants explained that they preferred to avoid certain types of information—for example, cancer survival data:
"Um, only about two weeks ago was it the Audit Commission produced a document on patients' cancers, so I had a look at that on the internet, and it gave the survival rates for different types of cancer—and for cervical cancer it is about 62%, something like 62%-64% which frankly came as a real shock to me... The problem with finding out about cancer is you're into medical statistics, statistics about death, and you don't have the means of being able to cope with that. At least I didn't." (43 year old woman one year since diagnosis of cervical cancer)
Sometimes websites' information was too all encompassing for British sensibilities, as suggested by this man with bowel cancer:
"The Americans, their websites, they give you everything. They tell you which prayer group to go to at the beginning and the end. They tell you which place to go on holiday, you know. They tell you which muffin to make life easier—you know, your constipation. And, uh, if you would like to dial and ring so-and-so they'll tell you all about their situation."
Discussion
Eaton L. Europeans and Americans turn to internet for health information. BMJ 2002;325: 989.
Eysenbach G, Powell J, Kuss O, Eunryoung S. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA 2002;287: 2691-700.
Eng TR, Maxfield A, Patrick K, Deering MJ, Ratzan SC, Gustafson DH. Access to health information and support: a public highway or a private road? JAMA 1998;280: 1371-5.
Coiera E. The internet's challenge to health care provision. BMJ 1996;312: 3-4.
Grol R. Foreword. In: Edwards A, Elwyn G, eds. Evidence based patient choice. Oxford: Oxford University Press, 2001.
Muir Gray JA. The resourceful patient. Oxford: eRosetta Press, 2002.
Hardey M. Doctor in the house: the internet as a source of lay health knowledge and the challenge to expertise. Sociol Health Illn 1999;6: 820-35.
Reeves P. How individuals coping with HIV/AIDS use the internet. Health Educ Res 2001;16: 709-19.
Leydon G, Boulton M, Moynihan C, McPherson K. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 2000;320: 909-13.
Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001;84: 48-51.
Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet 2001;358: 397-400.
Herxheimer A, McPherson A, Miller R, Shepperd S, Yaphe J, Ziebland S. A database of patients' experiences (DIPEx): new ways of sharing experiences and information using a multi-media approach. Lancet 2000;355: 1540-3.
Coyne IT. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs 1997;26: 623-30.
Pope C, Ziebland S, Mays N. Qualitative research in health care: analysing qualitative data. BMJ 2000;320: 114-6.
Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. London: Sage, 1990.
Marshall MN. Sampling for qualitative research. Fam Pract 1996;13: 522-5.
Goffman E. On face work: an analysis of ritual elements in social interaction. Psychiatry 1955;18: 213-31.
Jadad AR, Rizo CA, Enkin MW. I am a good patient, believe it or not. BMJ 2003;326: 1293-5.
Radley A, Billig M. Accounts of health and illness: dilemmas and representations. Soc Health Illn 1996;2: 220-40.
Cant S, Sharma U. A new medical pluralism. Alternative medicine, doctors, patients and the state. London: UCL Press, 1999.
Stephenson FA, Britten N, Barry CA, Bradley CP, Barber N. Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice? Soc Sci Med 2003;57: 513-27.
Mead N, Varnam R, Rogers A, Poland M. What predicts primary care patients' interest in the internet as a health resource? A questionnaire study. J Health Serv Res Policy 2003;8: 33-9.
Cline RJ, Haynes KM. Consumer health information seeking on the internet: the state of the art. Health Educ Res 2001;16: 671-92.
Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an internet site? A qualitative study of information needs. Patient Educ Couns (in press).(Sue Ziebland, senior rese)