Government makes cancer record u-turn

By MARTIN JOHNSTON health reporter

General practitioners' records on a million women are likely to be opened to cervical cancer researchers under a plan presented to Parliament.

The health select committee yesterday recommended that official auditors of the cervical screening programme be allowed to use certain primary healthcare records of enrolled women without their consent.

This reversal of proposed legislation has outraged women's health advocates, who thought they had defeated a measure they consider a needless invasion of patient privacy.

They, the Medical Association and Green Party committee member Sue Kedgley, who also oppose the move, predict many women will desert the programme.

The committee's recommendation is in line with the Gisborne cervical cancer inquiry and subsequent reports by Government-appointed watchdog Dr Euphemia McGoogan.

It seems assured of safe passage through Parliament since all parties on the committee except the Greens supported it, and Health Minister Annette King yesterday gave it the Government's blessing.

In 2001 the Government proposed that auditors be able to obtain enrolled women's records from hospitals, GPs and nurses without consent.

It partly retreated after an outcry from women's groups. Its Health (Screening Programmes) Amendment Bill proposed that auditors could obtain women's records from the screening programme, laboratories and hospitals without their consent - but not from GPs.

Committee chairwoman Steve Chadwick acknowledged the concerns about freeing access to health records, but said there would still be restrictions.

The researchers could look only at records relevant to changes in a woman's cervix, such as files on sexually transmitted diseases or miscarriages, but not on all her hospital admissions.

The Gisborne inquiry report said effective evaluation of the programme could not be guaranteed if women's consent was required for access to their files.

But women's health advocate Sandra Coney said of the committee's proposal:

"It flies in the face of what women said they wanted during the consultation process [in 2001]."

GP records could cover sensitive topics such as mental health and abortions.

"Women don't want external people looking at all that information ... "

She said most women would, if asked, grant the researchers access to their records. This was already happening: at least 85 per cent of women in an audit, now under way, of cervical cancer cases had given such consent.

But Otago University cancer researcher Dr Brian Cox, who welcomed the committee's proposal, said that every woman who refused consent weakened an audit.

"The greater the percentage, the better off you are, but you're still wondering whether there's something peculiar about the other 10 to 15 per cent.

"If the 15 per cent were women who had had difficulties or delays in diagnosis or previous negative smears and for whatever reason they don't want to provide information ... they are the very ones you would need in your evaluation. To leave them out would give a false picture."

A Federation of Women's Health Councils spokeswoman, Barbara Robson, said the committee's move was unexpected.

"We will now have to work out how we are going to strategise [to oppose it]."

The committee's other main proposal is to limit the bill to cervical screening.

Left unchanged, the bill would give the Government power to extend it to other screening programmes.

The story so far

April 2001: Gisborne cervical cancer inquiry says researchers must be given access to health records of women enrolled in the screening programme, without patient consent.

June 2001: Health Ministry floats law change to implement this.

Objections, mainly from women's groups, force Government into partial backdown.

May 2002: Government bill proposes access to screening programme, hospital and laboratory records without consent, but not to primary healthcare files.

Yesterday: parliamentary health committee recommends adding primary healthcare to the no-consent-needed list.