Surveys and Privacy/Insurance

I've never been asked to participate in a survey. I think I would ignore the request unless it came from the Dr. office. jams

Unfortunately, as soon as you are diagnosed, you are entered into a Tumor Registry. At the treatment center level, state level, and possibly even federal level. Your insurance has all of your info, too...just by the types of claims that they have processed.
I have participated in some surveys..but, like Lisa I am careful. I also want to make sure they are not just trying to sell me something. Before you start worrying about the info in the registrys, according to HIPPA laws, information is not allowed to be shared without your express permission...
Hugs, Kathi

Hi Maria,

As a researcher myself I can tell you that all research involving humans is absolutely confidential. As long as you make sure the research is being done by a university affiliated research centre, then you are completely protected by the institution. All research proposals have to be approved by various ethics committes before it can begin.

If you are concerned, then simply ask for a copy of the explanatory statement (which must include the approving ethics committee details). You are also asked to sign a consent form which assures the confidentiality of the information.

Almost all research now de-identifies individuals, so that the information provided cannot be traced back to anyone. It is absolutely, totally and utterly against all protocols everywhere for universities to provide any confidential info to government agencies, and would be the end of an academics career if they did! The only caveat here is duty of care, so if the researcher felt the person was in danger of harming themselves or another person, then this can be reported under certain circumstances.

Every diagnosis of cancer is kept in a registry in most countries, which is of course totally necessary or we wouldn't know how many people have cancer, what the outcomes were and therefore where the limited research funds need to be spent. However, I know that certainly in Australia and the UK this information cannot be passed on to third parties under any circumstances (especially not insurance companies). This would seem an extremely unethical practice and one I have never heard of.

I take part in as many research studies as I can, so that it can potentially help others in the future.

I hope this information is of some use to you.

Cal

Hey, Maria -

I can vouch that CORE is legitimate and will keep your info private. A number of folks from the Colon Club have been working with them for a couple of years.

The comments about HIPAA (HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996 - here's a link to the site: http://www.hipaa.org/)and the privacy of your info are on the mark. Most statistical survey agencies convert your personal identification to a corresponding number to help ensure your privacy. Of course, if they ask something you don't feel comfortable in providing (like your SSN) you don't have to answer.

Here's a brief excerpt from the Act regarding disclosure:

Title 45: Public Welfare

PART 5b—PRIVACY ACT REGULATIONS

§ 5b.9 Disclosure of records.
(a) Consent to disclosure by a subject individual. (1) Except as provided in paragraph (b) of this section authorizing disclosures of records without consent, no disclosure of a record will be made without the consent of the subject individual. In each case the consent, whether obtained from the subject individual at the request of the Department or whether provided to the Department by the subject individual on his own initiative, shall be in writing. The consent shall specify the individual, organizational unit or class of individuals or organizational units to whom the record may be disclosed, which record may be disclosed and, where applicable, during which time frame the record may be disclosed (e.g., during the school year, while the subject individual is out of the country, whenever the subject individual is receiving specific services). A blanket consent to disclose all of a subject individual's records to unspecified individuals or organizational units will not be honored. The subject individual's identity and, where applicable (e.g., where a subject individual gives consent to disclosure of a record to a specific individual), the identity of the individual to whom the record is to be disclosed shall be verified.

(2) A parent or guardian of any minor is not authorized to give consent to a disclosure of the minor's medical record.

I completely understand your concerns about privacy. I participated in a genetic study with the National Cancer Institute and I have real concerns about the fact that I have genetic cancer getting into the wrong hands, specifically those of an insurance company (whose job it is to NOT pay claims) that might contend I had a pre-existing condition.

Hope my comments and those of our fellow SemiColons are helpful.

- SpongeBob