here - Little Hearts Matter

2122 LHEARTS 20PP:NewsletterNo2 2009.qxd 05/11/2009 10:06 Page 18The ReviewEvery issue we feature a review of abook or website or film that ourmembers may find interesting.In this issue, Gill Cloke, hasreviewed www.healthtalkonline.orgWritten byGill ClokeHealthtalkonline is the website of the DIPExcharity, which aims to make available a rangeof patient’s perspectives of a particular conditionor illness through creating a database ofpersonal experience. Healthtalkonline hasbeen set up to let folk share in theseexperiences of health and illness, by watchingor listening to videos of interviews, readingabout people’s experiences and offering thechance to find out information aboutconditions, treatment choices and support.The information on Healthtalkonline is basedon detailed research into patient experiencesconducted by interviewers at the University ofOxford. The website was set up with thelaudable aim that offering personal stories ofhealth and illness would enable patients,families and healthcare professionals tobenefit from the experiences of others.The website is arranged by types ofcondition, and topics of common concern suchas living with disability, intensive care, and thesomewhat strangely named ‘living with dying’.There’s a section on heart disease containingan extensive area for ‘parents of children withcongenital heart disease’. This is arranged bysubject and includes such topics as: discovery(after birth and during pregnancy), preparingfor birth and labour, telling others, adapting tolife, feeding and medication, impact on family,talking to your child about their heart, death ofa child, surgery and cardiac catheterisation,child’s quality of life and development. Withinthese you’re then offered a range of interviewsof real people talking about how theirexperience and how this issue has affectedthem and their family, and how they’vehandled it; you can either download thetranscript or watch clips of the interviews.The interviewers have taken care too, tomake sure different viewpoints are covered;e.g. in the bit I looked into in detail aboutpreparing your child for surgery, besidestalking about how to prepare your child, they’dalso covered some people who’d chosen notto tell their child - and how this had worked inone case, but been very much regretted inanother. In the Resources and Informationsection they then have the cardiac teams anddiagnoses, with more information on theseand the treatments offered.This site is easy to use, easy to navigatearound, and they offer options alongside eachinterview to email it to a friend. You have toregister to use the forum. One small gripe isthe way they show the transcript of eachinterview alongside the film clip of it, and in ascreen just as big, so it actually serves todistract from watching the person talking. I’mnot sure why they do this - for people wantingto read rather than watch the interviews, theoptions for getting the transcript are veryobvious, so why put it here to distract as well?But this is a small niggle in a very valuablewebsite - totally gripping, in fact, I had to tearmyself away!Strongly recommended.18Getting Reliable Health Information from the World Wide WebIt’s so easy to go to the internet to look forinformation - we all do it at different times and fordifferent reasons. Many of the things we find willbe very useful information. However, sometimeswhen thinking about medical information, we cancome across misleading or unreliableinformation.To help members make the most of thebenefits the web can bring, we’ve had a look forsome information so you can distinguish atrustworthy health website from one which maynot be as useful as it first seems.The Health on the Net Foundation is a nongovernmentalorganisation, which works in thefield of health information ethics, and hasestablished a code of conduct and anaccreditation mark for health websites. Theysuggest considering the following points:1. Are the qualifications of authors of healthinformation given?2. Does the information complement and nottry to replace the doctor-patient relationship?3. Is there a privacy policy for personalinformation submitted by site visitors?4. Is the source(s) of the health informationprovided and are dates of publication / lastupdate on the pages? Is the person qualifiedto give this kind of information?5. Are justifications given for claims aboutthe benefits and disadvantages of products,treatments or services?6. Is the ownership of the site transparent,e.g. is there a contact address? Is the siteowned by a recognised body or institution?7. Is the source of funding of the site clear?8. Is advertising and editorial content clearlyseparated?They also recommend an overall approach ofvigilance, advising people not to trust promisesof miracle treatments and never to takeinformation found on the internet as medicaladvice.Please remember that there is a wealth ofmedical and lifestyle information on the LHMwebsite, and all our medical information hasbeen verified by the charity’s medical adviserDr Oliver Stümper, Consultant PaediatricCardiologist. If you ever want to discussinformation you find on the internet, please don’thesitate to contact us, or to discuss it with yourchild’s medical team. We don’t want todiscourage anybody from using any informationsource they find helpful; we just want to makesure you are getting good information. Happysurfing!