Internet is key to patient power
The web is enabling cancer patients to uncover the latest medical facts and check that they have been offered the best treatments without having to challenge their doctors face to face, according to a study in the British Medical Journal1.
A Cancer Research UK scientist studied interviews with 175 men and women, aged 19 to 83, who had been diagnosed with cancer in the last 12 years to assess how they used the web. The interviews were conducted for the DIPEx database - a health information resource based on video and audio excerpts from interviews with people who have experienced cancer.
The study showed that the Internet helps people to exert some degree of control over their treatment and disease. Many used it to research the latest medical developments, find support and share experiences with other patients.
Serious illnesses can often undermine a person's self image as a competent member of society. However the researchers found that the Internet could empower them with knowledge about their disease.
The study's lead author Sue Ziebland, who is funded by Cancer Research UK and based at the University of Oxford, says: "In healthcare circles the Internet is sometimes portrayed as a home to unscrupulous fraudsters or 'quacks' selling cure-all remedies. While there obviously is some unreliable or incomplete information out there, this study shows that many cancer patients are very discerning about how they use online information.
"They treat the web as a huge medical library that allows them to gain a lot of medical knowledge about their illness and learn how other patients are dealing with changes to their lives and relationships."
Ziebland adds that the Internet is changing the way that people experience cancer. Some patients use the web to covertly check treatments recommended by their doctors or to request new therapies.
"People are acquiring a lot of medical knowledge about their conditions and using this to support and plan detailed questions that they can then ask their consultants. This can help them to be confident that they are getting the best treatments and taking account of their own priorities. Many patients realise that with so much new information available they can't expect their GP to be on top of it all. Health professionals should welcome this change, guide patients to trusted websites and, if necessary, help them interpret what they find," says Ziebland.
The interviews were conducted for the charity DIPEx. It runs a website which features video, audio and written excerpts from interviews with patients about their experiences of illnesses. All participants were asked about where they found information and their use of the Internet.
The study highlights how the web is a very attractive information source for cancer patients. It is a quick, private and anonymous method of finding out information or answering simple questions 24 hours a day.
Patients described using the web to find out about their cancer, surgical procedures, the drugs prescribed, to check the expertise and reputation of a doctor or hospital and to seek support groups.
Professor Robert Souhami, Cancer Research UK's Director of Clinical and External Affairs, says: "Sometimes people just don't want to ask doctors questions that they think may be perceived as ignorant or embarrassing. Often patients forget to ask all they need to know or want to supplement their knowledge of the disease and its treatment."
- British Medical Journal 328 (7439)
Notes to Editor
DIPEx is an Oxford based charity that produces an award winning website, www.dipex.org. The resource is aimed at patients, their carers, family and friends and as a teaching resource for health professionals. The website is based on video and audio recorded interviews with hundreds of people who describe their own experiences of serious illness, health problems or health related matters. Each interview is linked to reliable information about the condition or illness, patients' frequently asked questions and answers and links to other organisations that can provide help and support.
The interviews were conducted with 175 men and women aged 19 to 83, who had been diagnosed with cancer of the breast, prostate, cervix, testicles or bowel since 1992.
CancerHelp UK is the patient information website of Cancer Research UK. This award-winning site offers information on all major cancers for patients and families. It is designed to be easy to use, even for those with little or no Internet experience. All information is in plain English and written from the perspective of the person with cancer. There is a searchable database of clinical trials open for recruitment in the UK. Experts regularly check the site to ensure all information is up to date. It is also an exemplary information partner of NHS Direct Online.