Health information on the internet used to be shaped by doctors. Now it’s being shaped by patients. And it’s patients, not doctors, who are making the real progress in providing health information that delivers what people really want to know. But how do you know if this information and advice is trustworthy, and worth heeding? Many people will be familiar with, or have experienced, the following scenario. Your doctor delivers the news that you are suffering from a condition or ailment. After the initial shock has passed, you are hungry for information, and once back at home, type the condition into Google. In front of you appears reams upon reams of information, including countless forums where patients share advice and support. But how do you navigate through this information minefield; will reading other people’s experiences prove beneficial, or instead deliver an unhealthy dose of fear, anxiety and misinformation? Separating fact from fiction
Certainly, health consumers are not blind to the net’s problems. Blatant commercial agendas which present opinion as fact, the downright barking bonkers, the health conspiracist – the net has them all. Six out of ten of us say in surveys that we know the net to be full of misinformation. But we love it on so many counts. Immediacy, confidentiality, the linking with others, and most can navigate round its faults by more exhaustive searching and comparing of sites, for instance.
And an overarching reason for the existence of these sites is the gap between what health professionals think we ought to know and our actual health information needs. After all, how many of us have emerged from the doctor’s office feeling slightly confused about a diagnosis, and how it will affect our quality of life? Patients can share their experiences According to Dr Elizabeth Murray, a GP and a researcher at University College London’s Primary Care and Health Unit, doctors can deliver the clinical details of a condition, but they sometimes struggle to understand the emotional and social implications. This is where patient websites come into play, and she believes they hold a vital role. “It is a real human need to discuss experiences and put these in the context of other people’s experience. Research shows that people really like to know what their illness has meant to other sufferers on an emotional, social and practical level.” She adds that patient-led sites can deliver information that may be hard to find elsewhere. “If someone wanted to know which travel insurer covers people with diabetes, the best place to get this information is from other patients,” she says. The ultimate in personal experience sites is DIPEx, which was relaunched last month as www.healthtalkonline.org . Here the content is moderated by researchers but it is real patients and carers talking about more than 50 conditions; the latest are Parkinson’s and autism. The site has recently included videos of people discussing their condition, which has proved a hit with patients. One message that the moderators received from a mother of a boy with autism read: “A lot of these autistic websites are full of fact sheets and information but here you can watch people talking about different aspects of the condition. You can laugh at the bits you want to laugh at, and cry at the bits you want to cry at. You sit back and think, ‘actually I’m not the only one’.” So successful is healthtalkonline at conveying patient experience, that now many medical students are instructed to visit the site to gain an insight into a patient’s mind. Similarly, the patient-led website www.prime-cfs.org is also used by medical professionals. This site was set up by a group of patient support groups to allow information about the experiences and concerns of people with ME/CFS to be accessed by medical researchers. By doing this they hoped researchers would better understand this misunderstood condition. In addition to sharing experiences, anonymity is a feature that drives most people to online forums and health sites, says Murray, especially those for diseases that carry stigma, such as depression and alcoholism. Typing a question into a forum in the safety and privacy of your own home is much easier, and more convenient, than asking your GP face to face. “Some sites are literally lifesavers” Mental health sites for instance, such as www.mdf.org.uk which is used by over 10,000 people with bipolar disorder, are literally lifesavers for some, helping them to ease their way back into normal living in a way that conventional services could not hope to emulate. For those in a manic phase of the condition who are up at 4am, there is always someone else online in a user group. The advantages of a patient-led site here, and of being in a community with others who share the same problems, are obvious. Another example of a successful patient-led site is www.downyourdrink.org.uk . This, as the name suggests, is a site for drinkers; not for those who are physically dependent on alcohol but for the 8 million people who are regularly drinking too much, a number likely to include many Times readers. Devised by Stuart Linke, a consultant clinical psychiatrist, it originally started as a six-week interactive treatment programme in web form. But then it was extensively redesigned as a result of user e-mails It’s now a radically different site that is tailored to match the individual, with a multitude of levels and interactions. It doesn’t hector or finger-wag. As a result of that input, it has clearly hit the spot and there is already some evidence that the heavy drinkers who use it are drinking less. A survey of 10,000 of its users revealed that they were on average 38 years of age, half had university degrees, most had good jobs. Few would have got near NHS treatment until they had already harmed themselves or others through alcohol use. The site is now part of a clinical trial assessing its health impact. Half the users will get directed to an information-only site, the others to an interactive site. But there are disadvantages associated with patient power sites, the principal of which is whether you can trust the accuracy of what you read, and understanding what, if anything, may apply to you. But forums should be treated with care One key point to remember when looking at forums, says Murray, is that happy patients are unlikely to share their experience. Dissatisfied patients, however, will want to share their gripes with others, and therefore will be more likely to post comments. Thus, the anecdotes you read may not represent a typical patient experience. To counter this, some sites, such as www.healthtalkonline.org.uk, are run by moderators who collect a range of patients’ stories – positive and negative, to ensure that they are representative. And be wary of engaging in an emotionally charged forum if you are feeling fragile or upset, cautions Murray. “You need to make sure that you don’t get mixed up with a lot of angry depressed people who are having a horrid time.” Taking all of this into account, are there any key points to remember when visiting patient-led health information websites? The first thing to note, says Murray, is who runs the site. Is it run solely by patients or do clinicians also have an input; does it seem to have a particular agenda? “Think to yourself, where do these sites originate from; who’s funding it; who’s built it; who’s advertising on it? If there’s a great deal of advertising from the pharmaceutical industry it’s unlikely that you’re going to get something that is critical of certain drugs,” she says. Stick to the well-known sites Murray believes that patient-led sites are fantastic tools for emotional and practical support, but medical information is best obtained from a well-known site (see box) or from a healthcare professional. “When you’re going on to the internet for health information, think, if I was talking to someone face to face would I prefer to talk to my neighbour with arthritis about the latest treatments for arthritis, or would I prefer to talk to my doctor?” Both are useful sources of information, she says, but both have their limitations. And what of the future; will there ever be a rating system that indicates if a website is helpful and trustworthy? Despite many previous efforts sinking without trace, the NHS is trialling a new scheme. The scheme would not uate all websites, as this would be near impossible, but instead involve websites asking to be rated by the scheme. If successful, it may be rolled out next year. However, some sites have started their own schemes, such as the site www.prostate-link.org.uk . This is a great example of what collective patient action can achieve. According to a National Audit Office report, prostate cancer lags behind other cancers in terms of the quality of information available to patients. So in 2005 a dozen patient support organisations pooled their resources, which were then matched by the Department of Health. The group paid an independent team to star rate more than 1,000 pages of internet information on prostate cancer, based on what a patient-user group said mattered, such as theaccuracy and clarity of information and lack of jargon. Some well-known sites bombed, getting only two 2 stars. Initially, the poorly rated sites were incensed. But then most quietly went away and addressed the problems that had been identified. “UK Prostate Link has acted as a catalyst in getting website providers to improve the quality of their information,” John Neate, the chief utive of the Prostate Cancer Charity, says. Take simple steps to protect yourself Sites that change often are checked quarterly and all sites are reviewed every year. Gaps in information identified by users – for instance on recurrent prostate cancer – are redressed by sharing them with information providers. And in the absence of such a quality assurnace scheme, Murray recommends using a simple strategy to uate the quality of information on the internet: common sense. “People should approach the web with cautious distrust. Think: does this look like something I want to trust; does this make sense to me; does this fit with what I already know; do the people who are saying it seem sensible? “Simply apply normal rules of judgment that you use in your normal daily life.” Click… if you are sick www.healthtalkonline.org Backed by the great and good, such as Jon Snow, Philip Pullman and Libby Purves, this is a gold-star patient information site. The Oxford University research team behind the site has conducted hundreds of interviews, so that visitors can read, hear and listen to what other patients have experienced. NHS Choices www.nhs.uk This extensive site includes detailed medical information, and a search tool that allows you to find your local health services – from doctors and dentists to gyms and hospitals. Further, you can share hospital feedback, and read blogs by people with long-term conditions. Make sure to bookmark this one. www.patient.co.uk A favourite among GPs, this site has detailed information about all aspects of medical conditions, complete with pictures and diagrams. It also has a popular patient experience forum. The site is run by a husband and wife team, both GPs, and although funded through advertising, it is fiercely independent and receives no funding from other sources, such as drug companies. www.netdoctor.co.uk A good all-rounder featuring health information, news stories, video and a directory of local services. The site is written by an expert panel of healthcare professionals, and is funded through advertising. www.youthhealthtalk.org Created by the same team behind www.healthtalkonline, this site allows young people to share their experiences about illness. It also includes a popular forum, and is backed by the frontman of Radiohead, Thom Yorke. www.teenagehealthfreak.org Inspired by a successful series of books under the same name, this site delivers cringe-free advice about all things adolescent – from sex and spots to alcohol and smoking. Family planning association www.fpa.org.uk A good site for information about contraception, especially in light of the finding this week that 30 to 50-year-olds are less likely than teenagers to use a condom with new partners.