In­ter­net site chas­ing fact, not fiction

The Weekend Australian - Travel - - Health - Adam Cress­well Health ed­i­tor

TURN­ING to the In­ter­net for med­i­cal in­for­ma­tion has tra­di­tion­ally been a prac­tice best re­served for gam­blers. Some of the in­for­ma­tion to be found on­line is ac­cu­rate, and some of it, er, isn’t. ‘‘ I have seen some truly ter­ri­ble things — pa­tients with mul­ti­ple scle­ro­sis, who are des­per­ate, and have paid a lot of money to have tests done that were com­pletely worth­less,’’ says doc­tor Bruce Camp­bell. ‘‘ They have come to me and I have had to tell them the truth — that they have wasted their money.’’

Such sce­nar­ios may soon be less com­mon. Camp­bell is the chief ed­i­tor of a new web­site launched yes­ter­day by fed­eral health min­is­ter Tony Ab­bott which aims to be a com­pre­hen­sive source of ac­cu­rate, un­der­stand­able in­for­ma­tion about pathol­ogy tests: why they are per­formed, the dis­eases and con­di­tions they can de­tect, and how to in­ter­pret the re­sults.

When peo­ple should con­sider screen­ing for var­i­ous dis­eases, and to what ex­tent peo­ple can trust the var­i­ous home-based tests that are now avail­able, will be among the thorny ques­tions tack­led on the site de­vel­oped by the Aus­tralasian As­so­ci­a­tion of Clin­i­cal Bio­chemists with sup­port from the Royal Col­lege of Pathol­o­gists of Aus­trala­sia.

Al­though web­sites with trust­wor­thy health in­for­ma­tion have grad­u­ally been spring­ing up in re­cent years, few of them have spared much thought for pathol­ogy tests. In­for­ma­tion avail­able on­line to date has largely been ei­ther of ques­tion­able ac­cu­racy, or writ­ten in sci­en­tific gob­bledy­gook un­likely to be com­pre­hen­si­ble to the av­er­age pa­tient.

The new site, a not-for-profit ser­vice called Lab Tests On­line, is the Aus­tralian ver­sion of a site that has al­ready proved a run­away suc­cess in the US, where it was first set up in 2001 and now at­tracts 1 mil­lion hits ev­ery month.

Three years ago the site was du­pli­cated for the UK mar­ket, and it now also op­er­ates in Spain, Ger­many and Poland. Sites in Hun­gary and Italy are in de­vel­op­ment.

Project di­rec­tor doc­tor Andrew St John said rapid ad­vances in ge­net­ics and other ar­eas of medicine meant that al­most ev­ery month there is a new test avail­able’’ and in­creas­ingly doc­tors need to rely on pathol­ogy tests for di­ag­no­sis and mon­i­tor­ing treat­ment. When some­one is ill, they are of­ten least able to ab­sorb the of­ten com­plex ad­vice they re­ceive,’’ he said.

‘‘ Lab Tests On­line will pro­vide a con­tin­u­ous and on­go­ing source of ac­cu­rate and im­par­tial in­for­ma­tion.’’

The Aus­tralian ver­sion is de­rived from both the US and UK sites, and among its sev­eral hun­dred pages in­cludes some fresh in­for­ma­tion writ­ten specif­i­cally to re­flect Aus­tralian prac­tice.

Camp­bell says the site is ex­pected to ex­pand, but al­ready has in­for­ma­tion on 138 tests and 78 con­di­tions or dis­eases — with sev­eral pages of in­for­ma­tion on each.

Like the over­seas par­ent sites, the Aus­tralian ver­sion is to­tally free of ad­ver­tise­ments and spon­sor­ships, and its con­tent is vet­ted by the in­ter­na­tional Health on the Net Foun­da­tion, which en­sures the site and its in­for­ma­tion abides by eight prin­ci­ples — such as in­di­cat­ing the au­thors’ qual­i­fi­ca­tions, sup­port­ing not un­der­min­ing the doc­tor-pa­tient re­la­tion­ship, proper at­tri­bu­tion of in­for­ma­tion, and back­ing up of claims.

‘‘ I have seen dozens of web­sites with com­pletely spu­ri­ous pathol­ogy tests that have no sci­en­tific value what­so­ever. They are purely prey­ing on the gulli­bil­ity of con­sumers,’’ Camp­bell said ahead of yes­ter­day’s launch.

‘‘ Pathol­ogy test­ing is a black box for pa­tients. They are sent to a clinic to have some blood taken, and they don’t get any in­for­ma­tion again un­til they are given their re­sults by the doc­tor.

‘‘ This site will re­ally help them un­der­stand what re­ally hap­pens to that sam­ple.’’

Al­though the site will not hold in­di­vid­ual pa­tients’ de­tails — peo­ple will not be able to get their re­sults on­line — it will help peo­ple un­der­stand the process bet­ter.

The site will also con­tain Aus­tralianspe­cific in­for­ma­tion, such as facts about Ross River fever, and other dis­eases such as dengue fever which, while not con­fined to Aus­tralia, are much more com­mon here than ei­ther the US or UK.

It will also have a list of links to other health-re­lated sites, but will only in­clude sites as­sessed as of­fer­ing trust­wor­thy in­for­ma­tion.

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