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What do NZ'ers think about sharing personal health data

What do New Zealanders think about sharing their personal health data?

New research developed by IPSOS and presented for the first time at the Public Health Association Conference indicates few New Zealanders want their personal health information shared beyond their immediate GP and hospital, and this presents challenges for using it at a national level for the public good, the conference was told in Dunedin today.

IPSOS New Zealand Research Director and keynote speaker Jonathan Dodd said we now know more than ever about the behaviours of our communities but that opportunities for linking this effectively with health information to improve health and health services are still limited due to people’s privacy concerns. He was presenting on his latest research paper for which he interviewed 265 New Zealanders and 101 GPs, and considered thousands of interviews conducted by IPSOS both here and overseas.

“We know people are basically good and have an innate instinct for fairness. However, while they understand how sharing their personal data could help others they are reluctant to do so if this leaves them feeling vulnerable – so those wanting to use “big data” for health management need to strike that balance between the needs of society and the needs of the individual.

“And the more sensitive that information is, the more restricted and trusted the audience has to be.”

He said people wanting to use big data within the health sector must understand that New Zealanders won’t share their personal data for purposes they poorly understand; yet they might be willing to share more personal data if they can see there are significant benefits for others. He said they are more willing to share data that has been anonymised (66 percent).

Interestingly, Dodd said New Zealanders are a trusting lot compared to many overseas countries.

“Eighty percent of New Zealanders said they trusted the health care system with their data, but not the central government. Even banks get more trust than the Beehive in this regard! They are also reasonably happy with GPs (72 percent) and local hospitals (58 percent) receiving their personal information but considerably less were happy to have their personal data shared with the Ministry of Health (17 percent.)

“Clearly people are happy for their information to be accessed, but only by those directly involved in their care.”

Dodd said another interesting and surprising finding was that GPs were even more conservative when it came to sharing their patients’ personal data.

“One would like to think GPs would be on the big data side, seeing they know more about the potential research benefits – but they are even less supportive, which will be a further barrier to people sharing personal information.”

He also said that while people were less concerned about their data being shared if it were anonymous, anonymity reduces the usefulness of that data, making it is less easy to cross-reference and analyse.

“So the key therefore lies in gaining public acceptance of storing named data for government social good analysis and that is going to remain a considerable challenge. At the very least, clear privacy safeguards will need to be in place and these will need to be obvious and clearly understood.”

Dodd said we are, however, seeing some encouraging signs in younger generations in that, with the rise of social media, young people are more comfortable sharing health information online.

“Our youth have grown up in a world where Facebook’s Mark Zukerberg has said, ’Privacy is no longer a social norm’. Or perhaps they haven’t lived long enough or seen enough of the world to realise how valuable privacy can be.”

Dodd closed by saying that while people did appear concerned about their privacy, they actually did little to act on those concerns, for example taking steps to increase their online privacy. This may be because their level of theoretical concern may not be as high as the research indicates in practice.

ENDS

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