Call for pri­vacy must be bal­anced with your health carer’s need to know

The Weekend Australian - Travel - - Health - HE­LEN HOP­KINS

MANY peo­ple approach the pri­vacy of their health in­for­ma­tion in the same way they approach works of art. They might not know much about it, but they do know what they like — and what they don’t.

Like tastes in art, de­ci­sions about shar­ing health in­for­ma­tion with oth­ers are very in­di­vid­ual. Some peo­ple hap­pily post pic­tures of their X-rays and test re­sults on their blogs and tell health care providers ev­ery de­tail of their med­i­cal his­to­ries. Other peo­ple do not want even their close friends and fam­ily to know about their health prob­lems.

Pri­vacy con­cerns dif­fer from sit­u­a­tion to sit­u­a­tion. Some­one might be happy to share in­for­ma­tion about use of anti-de­pres­sants with a GP, but not their po­di­a­trist. This is a chal­lenge for pol­icy mak­ers and leg­is­la­tors, who seek a gen­eral frame­work for pri­vacy of health in­for­ma­tion that gives con­sumers the pro­tec­tion they want and also en­sures in­for­ma­tion can be ac­cessed when re­quired for the pro­vi­sion of health care.

Cur­rently our pri­vacy sys­tem looks a bit like a camel, and is dif­fi­cult for both con­sumers and providers of health care to un­der­stand. Health pri­vacy is­sues are gov­erned by both com­mon­wealth and (in some cases) state/ ter­ri­tory leg­is­la­tion or reg­u­la­tions, and can vary de­pend­ing on whether the in­for­ma­tion is used in a pub­lic or a private health ser­vice.

This makes lit­tle sense to con­sumers mov­ing from one part of the health sys­tem to an­other, for ex­am­ple from a pub­lic hospi­tal to a private aged-care fa­cil­ity.

Im­prov­ing the way we deal with pri­vacy of health in­for­ma­tion is be­com­ing in­creas­ingly im­por­tant due to emerg­ing trends in care, such as in­creas­ing rates of chronic dis­eases.

Peo­ple with chronic dis­eases typ­i­cally re­quire health care from a range of dif­fer­ent health pro­fes­sion­als over ex­tended pe­ri­ods of time. This means that their health in­for­ma­tion has to be avail­able in dif­fer­ent set­tings, at dif­fer­ent times and able to be ac­cessed by dif­fer­ent care providers.

An­other ma­jor change is the in­creas­ing use of new tech­nolo­gies, which cre­ate new op­por­tu­ni­ties for shar­ing and trans­fer­ring in­for­ma­tion, such as elec­tronic health records, and elec­tronic scripts and dis­charge sum­maries. Th­ese can have sig­nif­i­cant ben­e­fits for con­sumers but in­crease the po­ten­tial for health in­for­ma­tion to be shared with­out con­sumers’ knowl­edge or con­trol.

An­other is­sue is that it can be dif­fi­cult to an­tic­i­pate and plan for the cir­cum­stances in which ac­cess to health in­for­ma­tion is re­quired. In an emer­gency in­for­ma­tion may be re­quired im­me­di­ately, even if the per­son is not able to pro­vide in­formed con­sent.

Health in­for­ma­tion can also have con­se­quences be­yond the in­di­vid­ual. Tak­ing a fam­ily med­i­cal his­tory in­volves col­lect­ing in­for­ma­tion about fam­ily mem­bers of­ten with­out their knowl­edge. In­for­ma­tion re­lat­ing to ge­netic test­ing can have rel­e­vance for peo­ple who do not yet ex­ist — for ex­am­ple, fu­ture chil­dren.

Ad­dress­ing is­sues such as th­ese is a chal­lenge for any reg­u­la­tory sys­tem. The Aus­tralian Law Re­form Com­mis­sion (ALRC) re­cently re­leased a lengthy dis­cus­sion pa­per on pri­vacy laws dis­cussing the spe­cific ap­pli­ca­tion of th­ese laws to health in­for­ma­tion.

The Con­sumers’ Health Fo­rum wel­comes the dis­cus­sion pa­per and sup­ports many of its pro­pos­als. In par­tic­u­lar, we sup­port the need for na­tional con­sis­tency in the approach to pri­vacy of health in­for­ma­tion. This is bet­ter for both con­sumers and providers, and will re­sult in lower com­pli­ance costs over­all.

We strongly urge gov­ern­ments to closely in­volve con­sumers in the de­vel­op­ment of a na­tional sys­tem of reg­u­la­tion or leg­is­la­tion gov­ern­ing health pri­vacy.

Changes to the ex­ist­ing sys­tem need to re­spond to the di­verse needs of con­sumers in re­la­tion to health in­for­ma­tion, and should work for all con­sumers. This in­cludes peo­ple with com­plex health care needs who may want dif­fer­ent as­pects of their health sta­tus and med­i­cal his­to­ries made avail­able to var­i­ous care providers.Con­sumers place a high de­gree of trust in their health care providers and trust that in­for­ma­tion about their health will be used ap­pro­pri­ately. Us­ing health in­for­ma­tion with­out the knowl­edge or con­sent of con­sumers is a breach of this trust.

What ex­actly con­sti­tutes the ‘‘ ap­pro­pri­ate use’’ of health in­for­ma­tion is a com­plex is­sue, and one which re­quires an on­go­ing con­ver­sa­tion be­tween the com­mu­nity, health pro­fes­sion­als and re­searchers. He­len Hop­kins is ex­ec­u­tive di­rec­tor of the Con­sumers’ Health Fo­rum of Aus­tralia

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