How the internet affects patients' experience of cancer: a qualitative study
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.328.7439.564 (Published 04 March 2004) Cite this as: BMJ 2004;328:564
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We welcome the paper by Ziebland et al exploring how the internet
affects patients’ experience of cancer(1). The reported enthusiasm for
accessing information on line resonate with our experiences despite
working in a relatively deprived city practice. This should not have
surprised us as a recent nationwide survey from AOL reported that people
in Sheffield spend more time online than anywhere else in Britain(2).
We also note that the National Institute for Clinical Excellence
recommends that breast cancer patients are not ‘followed up’ in specialist
clinics indefinitely and are effectively ‘discharged’ to primary care
three years after diagnosis (3). It seems likely that such patients may
not perceive their GP as having reliable answers to their questions, not
being a ‘specialist’ and choose to become more self reliant. Cancer
related sites may become more popular with patients. Research from
Sheffield University presented at the House of Commons unveiled a model
for the aftercare of breast cancer patients in primary care developed in
association with stakeholders including patients. Among the favoured ideas
are an electronic link between specialists, general practitioners and
patients. Greater openness and the seamless transfer of information were
perceived as vital to enhancing the patient experience. Extrapolating from
the conclusions of the DIPEx study1 the internet can be usefully
integrated into the future plans for cancer patients.
On behalf of the Journal club, Shiregreen Surgery, Sheffield
References
(1)Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L.
How the internet affects patients' experience of cancer: a qualitative
study. BMJ. 2004 Mar 6;328(7439):564.
(2) http://www.web-user.co.uk/news/48150.html
(3) http://www.nice.org.uk/cat.asp?c=36017
(4)http://www.setforeurope.org/
Competing interests:
None declared
Competing interests: No competing interests
‘Knowledge is power and I needed to know what was happening to me was
the right thing’ 1.
With the escalating costs of healthcare, increasing rates of medical
litigation and the known variation in clinical practise consumers are now
becoming more informed and are demanding high quality care 2.
Ziebland et al comment that the need for health information is not
novel 1. Historically, patients have relied on their doctors to provide
them with the information about their health care. With easy access to an
ever expanding array of health information on the internet individuals are
becoming self informed. This encourages implementation and awareness of
current best practise, thus improving the quality of care provided to
patients.
In the last 25 years quality improvement has increasingly become a
focus of the healthcare system. One definition of healthcare quality is
the 'degree to which health services for individuals and populations
increase the likelihood of desired health outcomes and are consistent with
current professional knowledge’3. Key aspects of quality include
equitable and timely access to care, efficiency, safety, effectiveness and
appropriateness of the care. Care must also be acceptable to the patient.
Patient centered care has been identified as one of the factors
necessary for high quality health care. Understanding patient perceived
needs, priorities and expectations for health care has been the focus of
quality improvement efforts 4. The internet provides patients with access
to many resources so that their decision making is fully informed. This
has contributed to both increased and decreased patient satisfaction.
Whilst there are some questions of the quality of health information
published on the internet and limited research suggests high variation in
accuracy and relevance, one cannot look past the benefits of empowering
the consumer with knowledge 1. The ongoing challenge for all health
professionals is to meet their patient’s expectations and requests. The
health system requires this external pressure to continually evaluate and
improve the quality of care provided.
1. Ziebland s, Chapple A, Dumelow C, Evans J, Prinjha S and Rozmovits
L. How the internet affects patients’ experience of cancer: a qualitative
study. BMJ 2004;328:564 (6 March).
2. Blumenthal D. Part 4: the origins of the quality of care debate.
NEJM 1996; 335:1146-9.
3. Blumenthal D. Part 1: quality of care- what is it? NEJM 1996;
335:891-894.
4. Cline RJ and Haynes KM. Consumer health information seeking on
the Internet: the state of the art. Health Education Res 2001 Dec;
16(6):671-92.
Competing interests:
None declared
Competing interests: No competing interests
COMMUNICATION SKILLS OF THE INTERNET
Sir,
Cancer patients have often complained of unsatisfactory communication
skills among health professionals. The study by Ziebland et al.1 pertains
to compensate for this lacuna in the doctor patient relationship. Cancer
patients have suffered emotional problems due to lack of adequate and
appropriate communication from their doctors and nurses. Professionals, on
the other hand, have found it difficult to break bad news and handle
difficult questions of the cancer patients, due to fear of upsetting their
patients or due to lack of skills. Internet would help cancer patients
obtain the information they need, look for answers to difficult questions,
though in an unemotional way. It needs to be seen how helpful this method
proves to be. Perhaps it may raise more questions in the minds of cancer
patients, which would be even more difficult for the professionals to
answer!
References:
1.Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L.
How the internet affects patients’ experience of cancer – a qualitative
study. BMJ 2004 [March 6], 328, 564-6.
Professor SK Chaturvedi
Consultant Psychiatrist
North Staffordshire Combined Healthcare NHS Trust,
Greenfield Centre,
Stoke on Trent.
Competing interests:
None declared
Competing interests: No competing interests
Free Internet access of cancer information for lay persons is
changing their views about cancer and, in some cases, it is maintaining
hope for life! Though all research work can
not be immediately applied to
clinical practice and some newer drugs (especially monoclonal antibodies)
are out of reach of poor, continuous work in this field is inspiring.
Competing interests:
None declared
Competing interests: No competing interests
Sir,
Ziebland et al (1) suggest that the Internet can be used “to find
alternative and complementary treatments” for cancer. There is much
evidence to show that many patients use it for that purpose, and when you
enter the term “alternative cancer cure” into the search engine Google,
you currently get in excess of 0.5 million sites. We should, however,
caution patients: many of the sites are overtly promotional and biased
towards unproven or hazardous cancer treatments. Others are discouraging
patients from using conventional cancer therapies. (2) This puts highly
vulnerable people at risk and can lead to fatalities. (3)
1. Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L.
How the Internet affects patients’ experience of cancer: a qualitative
study. BMJ 2004;328:564-9.
2. Ernst E, Schmidt K. 'Alternative' cancer cures via the Internet?
British Journal of Cancer 2002,87(5):479-80.
3. Hainer MI, Tsai N, Komura ST, Chiu CL. Fatal hepatorenal failure
associated with hydrazine. Ann Intern Med 2000;133:877-880.
Competing interests:
None declared
Competing interests: No competing interests
I read with interest the findings of Ziebland et al regarding
internet use by cancer patients. The experiences reported by the patients
they interviewed are certainly consistent with those that patients and
families on the wards tell of Internet use, and are similar to findings of
two surveys of Australian cancer patients undertaken in Sydney (1,2).
These surveys documented high and rising rates of Internet use
amongst cancer patients (46% in 2001.) Importantly patient perceptions of
the impact of the Internet upon their relationships and discussions with
their doctor, treatment decisions and coping were overwhelmingly positive.
Amongst 83 non-users of the Internet, recruited from consecutive oncology
outpatient attenders, the most common reason for non-use reported was lack
of access (60%), as hypothesised by Ziebland et al. Other reasons for non-
use were lack of Internet skills (29%), concerns about information found
there (7%), time and resource costs (6%) and having sufficient information
from other sources (14%).
There is no doubt that the Internet is now a cultural norm for
information seeking and that this extends to all of us when we require
health information. Having accepted this, we need to use the information
seeking experience described in research such as Ziebland et al, to better
meet patient needs and contribute to the equal meeting of such needs for
all patients. Specifically oncology services, health departments, cancer
organisations and charities should consider means to facilitate access to
the Internet, especially for disadvantaged patients or those in remote
areas. Organisations and providers can assist patients and their families
by ensuring websites contain locally relevant, user friendly, accurate
information and links.
1) Brotherton JML, Clarke SJ, Quine S. Use of the Internet by
oncology patients: its effect on the doctor patient relationship [letter].
Med J Aust 2002;177:395.
2) Brotherton JML, Clarke SJ, Quine S. The Net Effect. Serial surveys
of oncology patients and their Internet use. Available on-line at
http://www.virtualcancercentre.com/default.asp?url=/asp/press/press_desk...
Competing interests:
None declared
Competing interests: No competing interests
Using the internet as a cancer patient and an interested party
I am impressed to see this article published. I am not a doctor or
researcher but a 26 year old man who had two brain tumours, one in 1995
and the other in 1997. I have recpvered from these but have the sequlae
of hypopitruitism, sleep apoenea amongst a number of conditions. I spoke
at the first Teenage Cancer Trust Conference on Cancer and the Adolescent
and have tried to turn around my own problems using the web and publishing
some sites. I am currently working a project alled 'CHIP' or Cancer Help
Information Project. One of the chief aims behind this is the increasing
IT fluency of people, especially in my own age group and below. When I
had my first tumour (a corrion carcinoma on the hypothalamus) I used the
internet after my diagnosis because my descent into illness was so rapid.
However my family via my brother used the web to find information on the
turmour type, treatments and specialists. However, it was in no way to
precipitate any form of self-diagnosis, but to use the information
provided to pass on to proffessionals and others as well as familial use
as the tumour type was unusual. Subsequent to successful treatment my use
of the internet changed. One of the most important things I did was to
establish 'email' releationships; I was immuno-suppressed and could not
easily socialise so via the web I was coping to an extent with psycho-
social issues that presented themselves post disease. I note with
interest the idea you pick up on of 'campaigning'. I did this with a site
callled, 'young adults and cancer'
(http://easyweb.easynet.co.uk/~tfrg/Young%20Adults%20and%20Cancer.htm).
Despite not using host the site is being used.. My aim was also to relate
the experiences of having cancer to other patients and to expound those
things that I had found useful in my own illness.
I was unable to continue with my degree at the university of Bristol
because of Brain stem seizures.I have started work on www.chip.org.uk
(cancer help information project) which I hope will enable people affected
by cancer to access information on the condition and its attached problems
at a local (ie county level). Well done for publishing this it is about
time that the medical comunity to really recognise the usefullness of the
interent. I addd a final note of caution, it is indeed useful and good
for patients and those around to access information but they must be
educated that the web should only be a tool, there it is important to
understand that the internet is complimentary to scientific medicine.
Competing interests:
None declared
Competing interests: No competing interests