Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Where to from here?
- Julia ML Brotherton (8 March 2004)
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Internet can put cancer patients at risk
- Edzard Ernst, Katja Schmidt (8 March 2004)
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Hope is maintained
- Rajesh R Garje (10 March 2004)
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COMMUNICATION SKILLS OF THE INTERNET
- S.K. Chaturvedi (11 March 2004)
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Internet use; informed patients- burden or benefit?
- Natasha J Toohey (13 March 2004)
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Enthusiasm for accessing information on line
- Moyez Jiwa, Dr Ibtahal Mansoor and Mr Tim Strong (29 March 2004)
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Using the internet as a cancer patient and an interested party
- THomas FR Green, SN10 5BA (22 May 2004)
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Julia ML Brotherton, Public Health Physician The Children's Hospital at Westmead, Sydney NSW 2145, Australia
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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.asp&qs=sAction%3Dshow_selected%26iPressDeskID%3D46 Competing interests: None declared |
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Edzard Ernst, Director of Complementary Medicine Peninsula Medical School, Katja Schmidt
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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 |
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Rajesh R Garje, P D Hinduja Hospital Mumbai-400016
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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 |
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S.K. Chaturvedi, Consultant Psychiatrist North Staffs Combined Healthcare NHS Trust, Greenfield Centre, ST6 5UD
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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
Competing interests: None declared |
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Natasha J Toohey, Manager of Physiotherapy Alfred Hospital, Commercial Rd, Prahran, Victoria, Australia, 3141
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‘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 |
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Moyez Jiwa, Lead Research Fellow University of Sheffield, Dr Ibtahal Mansoor and Mr Tim Strong
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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 |
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THomas FR Green, Disabled Devizes, Wiltshire, SN10 5BA
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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 |
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