A specially-commissioned AMA Family Doctor Week poll shows that patients have strong concerns about the privacy and security of their medical records - even when they are de-identified - with their biggest concern being that their private health information could be sold for profit without their permission.

The poll was conducted by international research company, TNS, over the period, 1-3 July 2005, and involved 1001 respondents - 500 male/501 female; 694 urban/307 non-urban; 16-34 years (300), 35-49 years (322), 50-64 years (229) and over-65 years (150).

When asked should their doctor ask for permission before providing their de-identified medical information to third parties for various purposes, the respondents said Yes for Medical Research (81 per cent), Yes for Government purposes (78 per cent), and Yes for Commercial Purposes (79 per cent).

On the question of whether they would give their doctor permission to pass on the records, the patients said Yes for Medical Research (67 per cent), around break-even for Government purposes (45 per cent said Yes, 46 per cent said No), but 62 per cent said No to their records being used for Commercial Purposes.

Digging deeper into the responses, 57 per cent said they were 'very concerned' about security of the information; 43 per cent were 'very concerned' about the de-identification process; 48 per cent were 'very concerned' about a doctor profiting from the records; and 52 per cent were 'very concerned' about businesses profiting.

When asked if they would change doctors if they found out their doctor was selling their de-identified health information without their consent, 76 per cent of respondents said Yes.

AMA President, Dr Mukesh Haikerwal, said today that the poll results were not surprising and they confirm the AMA's view that patients and doctors need more education and information about privacy, electronic systems and security of medical records.

"New technology, sophisticated marketing practices and Government tracking of targeted medical programs and services are changing the face of Australia's medical practices, and this is placing new pressures on the doctor-patient relationship," Dr Haikerwal said.

"Our advice to doctors is to be sure what the information is to be used for so they can fully inform their patients about any process that involves using patient information that is identified or de-identified.

"Let the patient know what the information is to be used for and explain who will benefit from using the information.

"There should not be a problem if a research program has been approved by an ethics committee and if there is consent from patients for information being collected for government or medical research purposes, other than privacy and security issues related to the electronic collection, exchange and storage of the information.

"Where there is any commercial use or activity related to a patient's medical records, I would remind doctors to uphold the high ethical standards of the medical profession, exercise good judgement, and act in the best interests of the patient at all times."

Dr Haikerwal said the TNS poll has provided the AMA and the medical profession with some valuable data as it continues to consult with the Government and other agencies about the impact of electronic health initiatives on privacy, security and the doctor-patient relationship.

20 July 2005

CONTACT: John Flannery (02) 6270 5477 / (0419) 494 761

Judith Tokley (02) 6270 5471 / (0408) 824 306

Attachments: Summary of Poll Results

Comments from Poll Respondents

Attachment #1

Summary of AMA Family Doctor Week Poll Results

TNS conducted a survey of 1001 and respondents on behalf of the AMA. The questions were designed to gauge patient views on the provision of de-identified health information for uses such as medical research, market research and Government purposes.

Respondents were split 50/50 male and female with 500 male respondents and 501 female. On an age basis, respondents broke down to 300 in 16-34 years, 322 in 35-49, 229 in 50-64 and 150 in 65 and above. On a capital city and rest of State classification, the division was fairly representative with 694 respondents in capital cities and 307 located elsewhere in the State.

Results

Q1. Should your doctor ask your permission before he/she provides your de-identified health information for:

Medical research

Yes 81%

No 17%

Don't know 2%

Government purposes

Yes 78%

No 19%

Don't know 3%

Commercial purposes

Yes 79%

No 19%

Don't know 2%

Q2. Would you give permission to your doctor to provide your de-identified health information for:

Medical research

Yes 67%

No 25%

Don't know 8%

Government purposes

Yes 45%

No 46%

Don't know 8%

Commercial purposes

Yes 32%

No 62%

Don't know 6%

Q3 In relation to the provision of de-identified health information, on a scale of 1 to 5, with 1 being "not concerned at all" and 5 being "very concerned", how concerned are you about:

Security of this information:

Not concerned at all 10%

Slightly not concerned 5%

Neither 9%

Slightly concerned 15%

Very concerned 57%

Don't know 3%

The de-identification process

Not concerned at all 12%

Slightly not concerned 7%

Neither 17%

Slightly concerned 17%

Very concerned 43%

Don't know 5%

The doctor profiting

Not concerned at all 13%

Slightly not concerned 7%

Neither 14%

Slightly concerned 14%

Very concerned 48%

Don't know 4%

Businesses profiting

Not concerned at all 13%

Slightly not concerned 6%

Neither 12%

Slightly concerned 14%

Very concerned 52%

Don't know 3%

15% listed other concerns. This was an open ended question and responses received were generally focused on the what the information would be used for, assurance it is truly de-identified, patient privacy and the need for consent and possible discrimination against patients by insurance companies, employers or similar.

Q4. Would you change doctors if you found out your doctor was selling your de-identified health information without your consent?

Yes 76%

No 18%

Don't know 6%

Attachment #2

Selected Comments From Respondents

• Just be careful that it doesn't get in the wrong hands.
• I think privacy is very important.
• We should not have to give it.
• It's imposing on my privacy - I don't want my personal information to be spread.
• I am concerned about the privacy of information.
• The individual should be informed first.
• I think it should be private.
• I don't agree with it. It's only for myself and the doctors, no one else.
• It should be confidential between doctor and patient.
• It's all about privacy, I guess, even though it is being de-identified.
• I don't trust it, the use of private medical data for commercial purposes.
• You wouldn't want your info being used in the future with humans being chipped.
• I wouldn't want any information to be given without my consent, and if it happens I will seek legal actions.
• I do not want the world to know everything about me.
• Well, I haven't really thought about it, it all really depends on how the process is done.
• I'm concerned about how ethical it is.
• My information is my own, it should not be shared.
• They just should not be allowed to do it, full stop, unless they have consulted with you first.
• It might get to the wrong people.
• Concerned if they use the information for other uses.
• I wouldn't allow anyone to give out any of my personal information without my permission.
• I'm not actually sure as to what it is and I would need to have more information on it.
• People need to be more aware that these sorts of things could be going on, and they're just not aware of it. It should be brought to people's attention and if these sorts of things are going on then people should be prosecuted and penalties should be set very high. Not just a slap on the wrist. That is to say, white-collar crime is just as bad as any other crime.
• I think it can be valuable but I think it should be monitored by strict ethical standards. Collecting information does help develop systems or products and it shouldn't intrude on someone's privacy. OK if it does provide some good socially and doesn't cause harm to an individual.
• Insurance. If you have some genetic problem, if it would affect you, but I would have some suspicions if there were some commercial reason why they couldn't de-identify the information or whether they make some money out of it.
• I feel each individual is entitled to his or her privacy.
• If they do that to me it would be the last time they see me as a patient.
• Everything that I have like bank account and medical papers should be kept private.
• A bit dodgy.
• I would need more information on the subject to make a decision.
• They should not have it - never ever.
• I don't think that it should be released at all. They could falsify people's consent.
• The Privacy Act would be really important.
• Once you release it to one group, what will stop other groups having access to this.
• You can't get the information yourself, and yet they pass this on to someone else. I don't think this is on at all.
• It's against the Privacy Act, and the doctor has got no authority to do that.
• People shouldn't have access to that information because it's on a personal basis. There must be a guarantee of anonymity.
• I just don't think that this information should be shared with anybody other than a medical person.
• I also am concerned about the pharmaceutical companies applying undue influences.
• I don't want to give any information to anybody about anything.
• It should be kept secure at all times.
• I'm concerned about the fact that the doctors could get paid for the information.
• I'm worried if something goes back to your employer, and that could affect your employment.
• I would not like the government to get the hold of my personal medical information.
• It has privacy implications and I do not want commercial companies accessing my personal information.
• Do not let any information out especially on computers because they are too easy to access.
• I'm worried that somehow the individual may be identified through linking other databases.
• Information should not be given out at all unless it is for a compo claim.
• I want some idea of what commercial purposes the information is being used for.
• Should not be released under any circumstances without permission.