Issue 25 / 2 July 2012

IN this era of patient empowerment, there’s increasing demand for personal access to medical data, but how many of the following scenarios would most doctors feel comfortable with?

• Pathology labs adopting a policy of always communicating routine test results directly to patients as well as their treating doctors

• Radiologists notifying both the referring GP and the patient directly of a potential malignancy on a scan

• Over-the-counter kits to test HIV status in the privacy of a person’s home

The last of these is likely to soon be reality in the US, after a Food and Drug Administration (FDA) advisory committee recommended approval of a home-use HIV test.

Understanding the public health implications of such a test was “challenging”, the committee said, while ultimately concluding the potential benefits outweighed the likely risks.

It said the anonymity of the test meant more people were likely to be tested, potentially leading to increased awareness of HIV status, modification of high-risk behaviours and earlier diagnosis and treatment.

On the downside, a small number of false negatives posed a public health risk, and there was also a concern that people who tested positive might fall outside the system, leading to lack of treatment, notification of partners and inclusion in public health data.

All of the scenarios above pose a similar conundrum about how to balance the risks and benefits of disclosing this kind of information directly to the people most concerned — patients.

In the US, authorities last year recommended allowing patients to access results directly from laboratories on request, a practice that is currently banned in some states.

A commentary in JAMA suggested the proposed change would require a shift in attitude by both patients and doctors.

“Direct patient access to test results challenges the traditional physician role as information gatekeeper and requires role adjustments and behavior changes by physicians and patients alike”, the authors wrote.

One of the best arguments for providing results directly to patients as well as doctors is that it might help to address the estimated 8%–26% of cases where abnormal results slip through the cracks and are not followed up in a timely manner, they suggest.

Obviously, that would be a good outcome, though the JAMA authors also point out that there actually isn’t evidence on what the consequences of that kind of dual notification would be.

We do know that when abnormal test results are sent to both a GP and a specialist, follow-up is actually worse — a bit like a doubles tennis match, perhaps, when the ball is hit down the middle and both players stand back politely so the other can take it.

I would welcome being advised directly of my test results. It would give me time to absorb the information and work out the questions I wanted to ask of my doctor.

But not everybody would feel the same way, and it’s certainly not something that should be imposed on patients.

Perhaps more fundamentally, I think it would require even broader shifts in attitude and procedures than those foreshadowed by the JAMA authors.

Patients would need to become much more informed about their own health and about the nature and limitations of any tests they were undergoing: an excellent outcome if it were achievable.

Their treating clinicians would of course play a role in this, but it would also impose new requirements on laboratories to report results in an accessible and informative way for a lay reader.

The risks and challenges are there, no doubt, but the benefits in encouraging people to take more responsibility for their own health could be huge.

Jane McCredie is a Sydney-based science and medicine writer.

Posted 2 July 2012

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2 thoughts on “Jane McCredie: DIY health tests

  1. JR says:

    Most people can’t understand their phone bill, let alone pathology/radiology results. Google can only get you so far…

  2. Bruce Connor says:

    A good start on this issue may be for patients to be informed they have the option of having a copy of their test results sent direct to them from the Lab if they so desire at the time the Doctor is requesting the test. In WA patients are refused their results if they contact the Laboratory.Patients I believe have a right to their health information .

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