Abstract
Summary
Objective
To investigate current use of the internet and eHealth amongst adults.
Design
Focus groups were conducted to explore participants' attitudes to and reasons for health internet use.
Main outcome measures
The focus group data were analysed and interpreted using thematic analysis.
Results
Three superordinate themes exploring eHealth behaviours were identified: decline in expert authority, pervasiveness of health information on the internet and empowerment. Results showed participants enjoyed the immediate benefits of eHealth information and felt empowered by increased knowledge, but they would be reluctant to lose face-to-face consultations with their GP.
Conclusions
Our findings illustrate changes in patient identity and a decline in expert authority with ramifications for the practitioner–patient relationship and subsequent implications for health management more generally.
Introduction
The nature of the internet and its plethora of sites mean that health information on a whole host of topics can be accessed at literally the touch of a button. The normalization of household internet has meant journal articles, medical information and medical libraries are increasingly accessible. In 2003, the World Health Organization (WHO) identified over 100,000 health-related websites in operation, 1 with other generic sites totalling 60 million. 2
The NHS Expert Patients programme 3 advocates patients' active involvement in their healthcare by educating them and helping them to understand specific conditions, their implications and possible treatments; its aim is to create fully informed and consenting individuals. However, there is a discrepancy between the proposed ‘expert patients’ and willingness of health professionals to work with them, highlighting the need to educate health services staff about the potential benefits of the programme. 4 Although information for patients is available from the NHS and associated charities, increasing political awareness among patients, current NHS finances and media publicity of health scares (e.g. MMR, SARS, BSE) are swaying public attitudes toward being cynical of government and more trusting of the mass media to educate them on health issues. 5
However, in these attitudes lie problems. Complex scientific research is often summarized for the purpose of news reporting or posting on the internet, which can lead to misinterpretation if findings are not presented in their entirety. Medical research obviously deals with participants who vary by age, ethnicity, gender and socio-economic status, 6 which can potentially cause individuals to misapply and over-generalize the evidence. Internet health information can also lack authority cues that enable people to assess the validity of the information source. 7, 8 Indeed, we agree with Rennie and colleagues 9 that more research is needed to understand how patients use the internet and to evaluate the quality of information retrieved.
Potentially, the internet is a medium that can address health inequalities. We know that young men are less likely to visit their GP than women of a similar age, 10 and men are higher frequency users of the internet; though women are beginning to use it more, particularly for communication purposes. 11 Internet health users are generally considered to be of higher socio-economic status, education, income and job status; 12 whereas GP attendees are ethnically diverse 12 and belong to lower social class and employment groups. 13
Expert authority
The theory of expert authority, as described by Paterson, 14 refers to the power afforded to an individual who has greater knowledge and experience than another – in this case, the doctor–patient dyad. Historically, the power awarded the medical profession has enabled it to define what constitutes medical knowledge 15 and the profession has controlled access to knowledge by favouring a didactic relationship in which patients are passive recipients of treatment. 16 With the push for partnership in health management, however, the strength of this authority is under threat. Increased availability of information via the internet may also contribute to this challenge of authority, and that is one of the questions we addressed in this study.
Our first aim was to establish whether individuals use the internet for health purposes, and if so, how. We were interested in exploring how the internet would function as a resource for health information alongside existing mechanisms (e.g. GPs, NHS Direct) and within the context of the Expert Patients Programme. Finally, we asked whether the internet would change the way people manage their health.
Method
Data collection
Ethical approval was granted by the University Ethics Committee. We conducted four focus groups with eight men and eight women aged between 19 and 62 years (mean age 37.5 years). Participants were healthy volunteers and were recruited through quota convenience sampling. All participants described themselves as white British with varying levels of educational qualifications and occupations (including three health professionals). One participant was diagnosed with diabetes and another with irritable bowel syndrome (Table 1).
Focus groups were considered appropriate in this novel area of investigation because
of their interactive nature which enables participants to bounce ideas off each
other, compare attitudes and explore their shared and unshared experiences.
19
An open-ended schedule was used to guide the discussions but the facilitator
was keen to prioritize participants' stories so that any unanticipated ideas were
heard.
19
The schedule included questions such as: What do you use the internet for? Is there anything specific you look for on a health website? Can you trust the information you read?
Focus groups were digitally recorded and transcribed verbatim. Each lasted between 60 and 90 minutes.
Analysis
Focus groups were analysed using thematic analysis. 20 The analysis aimed to examine the meanings of participants' experiences of eHealth and to extrapolate what those experiences mean in terms of their own health management and the function on the internet within that. Transcripts were read several times to identify patterns, including similarities and differences in participants' experiences and opinions. The primary analyst (LSD) independently identified and defined a number of emerging themes. She then met with co-researchers (RLS and OBAA) to review the themes and ensure they represented the broader story of the whole corpus.
Results
Three superordinate themes were identified: decline in expert authority, pervasiveness of health information on the internet and patient empowerment. These will be discussed in turn using data extracts from the focus groups.
Decline in expert authority
The superordinate theme, decline in expert authority, comprises two subthemes: demise of meritocracy, and concerns about the NHS and the breakdown of trust in Government bodies, politicians and civil servants.
The authority afforded to health professionals, and doctors in particular, has in the past led to the doctor being considered a deity amongst men. However, the Expert Patient programme is encouraging patients to take a more involved and proactive role in their healthcare. Consequently, we are seeing an effect on power dynamics between health professionals and patients, with patients becoming regarded as the expert with regards to illness experience. 21 With this new-found knowledge comes a new power: the power to negotiate treatment.
Demise of meritocracy
The availability of health and illness information through journals, books and in
particular the internet has lead participants to doubt the authority of health professionals. I think the doctors can feel like if you're trying to do Like override them Yeah, if you self-diagnose then they tend to think, when I've said things
about the things I've found on the internet to a doctor before they, you can
just tell that they frown upon it a little bit some doctors, and think
you're just clutching at straws or you're being er… It's 'cause they think that they know best and you doubting them in
someway Oh yeah, personal ego isn't it.
Participant information
FG1M: Focus group 1 included all male participants; FG1F: Focus group 2 included all female participants.
And it's horse oestrogen in the early HRT
So I went back to him and told him all about it and he says ‘don't worry, I understand. I'll put you on something else’. I got home, checked that one, it was exactly the same again [Horse urine]. So I went back and I absolutely flipped.
It was probably because it was cheap.
Pam clearly feels misled and potentially patronized by her GP's apparent assumption that she will not discover the truth about the hormone s/he has prescribed. Another possibility is that the GP was unaware that the second hormone also contained horse urine.
Concerns about the NHS and the breakdown of trust
Participants displayed deep concerns about the current state of the NHS and the
implications for their future healthcare. Comments tended to be linked to and
reflective of media coverage of incidents of malpractice, which influenced
participants' judgement of the health service and health workers. Clare indicates
that current health professionals are less passionate about their role compared to
the health professionals of several decades ago. No, they [health professionals] don't really want to be doing it. So it's
that plus the fact you can't underestimate the fact that the whole nation
has been shocked rigid by people like Beverly Allitt, Harold Shipman,
there's Alder Hay, Bristol, I mean all these scandals over the last 10 years
have done irreparable damage to these people who the nation has always held
with great trust and very high esteem.
Participants' view of these isolated incidents reflected negatively on their view
of the Government, which filtered through to an overall cynicism of the
individuals and groups who work in the NHS. You can go on the National Health Service, but I think there's a two year
waiting list. It shouldn't be, 'cause what did Tony Blair say the other day that waiting
lists have been cut to 26 weeks? But he's going now so he could say anything.
This scepticism toward the Government, NHS and health professionals appears to reinforce the lack of trust in the doctor–patient relationship, and fuels the drive for complementary and alternative health information.
Pervasiveness of health information on the internet
Participants talked openly about their use of eHealth information, describing seeking
health information online as a normalized, almost daily activity. Internet use for
these participants plays an active and multifaceted role in their daily lives. When
asked to give an example of what she used the internet for in the context of health,
Gertrude replies: I was doing lipotrim [a diet programme for weight loss] recently to lose weight
so I actually joined an internet forum where you could chat to other people who
were doing lipotrim and get advice about like you know, you can ask 'cos it's
like a very low calorie diet. Um so I was just using that as a form of support
and also for information.
The many roles of the internet as specified by the participants embody, create and develop a consumer identity, which has the potential to not only affect their purchase choices but also their choices when it comes to healthcare, especially when combined with a greater knowledge of health and medicine.
A crucial concern that has been highlighted in recent medical literature of this
extensive internet use for healthcare is the validation of eHealth information.
9
Participants explored this issue in depth, explaining exactly what they look
for as a marker of good quality health information. The participants demonstrated a
knowledge of criteria that constitutes grounded and ‘safe’ information. For example,
they discussed the trustworthiness of websites endorsed by a Government department
(i.e. the NHS), and the need to investigate the origins of other eHealth information. I think you can get internet sites, 'cause I've looked at one that I think is
particularly good which the mouth cancer foundation and it was set up by a
restorative dental consultant um and its like a registered charity and all the
rest of it they've actually got some internet award. There's plenty out there but a lot of these are just bullshit, you've gotta be
careful, you've gotta kind of half know what you're looking for to make sure
you don't get caught off in any pseudo-science or any sort of crap.
Despite their ‘web literacy’, the next theme shows us that participants did not view eHealth information as a replacement for standard health services, but rather as a complementary information source alongside information or treatment from their GP.
Empowerment
The participants advocated the internet as an empowering tool in their healthcare. It
can not only be used as a complementary information source but also afforded
individuals the power to learn how to conduct their own health checks – if not for
self-diagnosis and treatment then just to ease their minds whilst waiting for a
doctor's appointment. I was covered in a rash all over my body and I looked at pictures on the
internet and erm thought mainly to check that it wasn't completely
life-threatening, like it wasn't gonna be some horrible disease, see if it was
something like measles or something erm, just for piece of mind before going to
the doctors.
This tactic did not work, however, in more serious instances: So I got the consultant to write down what it was [breast cancer] and straight
away Googled it and it came up with a Google Scholar erm two main research
articles that were cited a lot. One of which said prognosis is really good, the
other said that prognosis is terrible. So at that point I just thought ‘you
should know better than to go straight to the internet for advice like that’ so
I sort of stopped it.
Bernadette's experience demonstrates the point made earlier that scientific research can be complex. Despite her experience as a health professional (cognitive behavioural therapist) and having the skills to systematically search for research evidence on the internet, in this instance Bernadette felt swamped by her emotional response, which prevented her from behaving in a rational way.
The immediacy of the internet was advantageous to these participants because they
felt unable to get an immediate, or convenient, appointment to see their GP. The
internet appeared to be a solution to this dissatisfaction. Yeah, I picked up on what you [Gertrude] said though the convenience of it.
Like sometimes you get in and it's turned 6 o'clock at night and you just want
to ‘oh I'll have a look at that on the internet’ the doctors aren't accessible
then and the NHS helpline is useless half the time anyway (laughs).
Despite this, participants still preferred to see a doctor as and when needed. I think as good as the internet is and the way we're moving on in the future
and you've got all these you know diagnose yourself, I still don't think you
can beat personal contact. However futuristic we've got and whatever means
we've got I still think the old fashioned way, you speak to somebody who's
professional, you can't beat that.
The internet features highly in these participants' lives and they clearly describe eHealth as a beneficial and potentially empowering resource, given the skills to appropriately interpret information retrieved. The accessibility of eHealth information was compared favourably to GPs, which again highlights the need for out of hours surgeries for professionals and those in full-time education. Nevertheless, participants did not view their GP as redundant but fundamental in the role of gatekeeper to further and more specialized treatment which the internet cannot replace.
Discussion
We have heard participants' accounts of their own eHealth behaviour and where this fits within their wider health management. Despite their different educational and professional backgrounds, the overall message from participants converged around several issues. First, participants enjoyed the immediacy of eHealth information, which compensated for the perceived lack of availability of GPs. Second, their web literacy enabled participants to retrieve and, more significantly, assess the validity of health information on the internet. Thirdly, the availability of eHealth information empowered participants to make sense of their own experiences of health and illness which could act as a comfort whilst awaiting advice from a health professional. However, when searching for eHealth information which has personal relevance, it is possible that an emotional response will compound an otherwise rational and competent individual's ability to interpret what is found.
Given our argument that scientific research needs to be understood in context, our own research also needs to be considered in terms of both its objectives and limitations. Participants were recruited as internet users because the nature of the study required some first-hand experience. It may be that changes in identity or potential breakdowns of trust do not resonate with patients who do not access eHealth information. We do feel our study was robust, involving systematic methods of data collection and analysis. Engaging multiple researchers in the analysis process, in particular, provided opportunity for reflection and to monitor our interpretative activities. 27 Like most qualitative researchers, we did not aim to generalize our findings vertically to the wider population but we feel the themes we have identified are horizontally transferable to other settings (i.e. they help further our knowledge about patient identity and the implications of a related decline in expert authority). 28, 29
More fundamental is the impact eHealth appears to be having on the identity of the patient. Participants' use of eHealth information clearly demonstrates that resources are available for patients to become more proactive in their health management, which fits the ethos of the Expert Patients programme yet also challenges the authority awarded historically to the medical profession. The benefits of eHealth cannot be considered universal, however, as individuals may be limited by eHealth literacy and access to the internet.
As summarized above, our findings highlight both risks and benefits associated with this. In short, the key issue is power. The traditional sick role dyad 22 of the all-knowing doctor and submissive patient renders patients powerless. By endorsing self-management programmes, for example in diabetes care, 23 NICE and the government are moving toward a model of concordance which empowers patients to make their own healthcare decisions. 24 While our findings confirm that this can happen, they also corroborate earlier research which emphasized that patient decision-making, particularly self-care acts, are influenced by context (e.g. the nature of information source) and the fact that patients do not always feel they have the power to make decisions. 25 Previous research has also indicated that self-management, particularly of chronic disease, can have social and emotional effects, which we found can impact on rational decision-making. 26
Further research with other groups – such as minority ethnic groups, young people, older people, and people with acute or chronic conditions – would clearly benefit the evidence base on this dynamic process. We also need to expand knowledge about the function of eHealth information, and its potential links to behaviour change.
In short, this research has identified that patient identity is changing and that this process is aided by the accessibility of eHealth information. Internet use continues to rise and around two-thirds of internet users have searched for a specific health problem. 30 Participants were attracted to the internet because of its immediacy and because of its convenience. This has clear implications for GP surgery opening hours (currently on the government's agenda), 31 questions the expert authority of the health practitioner, and impacts on the power dynamics within the practitioner–patient relationship.
Footnotes
DECLARATIONS
Footnotes
Acknowledgements
We would like to thank the participants who volunteered