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Cancer Registry Cancer Registry

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  #1  
Unread 06-07-2003, 09:16 PM
Cancer Registry

Hi all,
I received a letter a couple of days ago from the cancer registry for the state of Oregon. It informed me that by law my case had been reported to them by my doctor and asked permission to contact me for possible participation in cancer studies and research.

Now don’t get me wrong, I certainly understand and support the need for such a registry, but what creeps me out is the fact that my name, address, phone number, details of my diagnosis and treatment were reported without my knowledge or permission. Of course the letter went on to state that the information would be kept strictly confidential, but since they were able to obtain it so easily, I seriously doubt it.

I understand that each state has a cancer registry and was wondering what everyone else’s experience has been? I just feel like my privacy has been violated.
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  #2  
Unread 06-07-2003, 09:23 PM
Privacy

Moonflower,

I've never heard about a cancer registry -- in any state. Is that true?

But my first thought was what about the new HIPAA law(s)? At a recent visit to my doctor, I received from the clinic printed information entitled "Notice of Privacy Practices" with regards to personal health information. Two sections in the printed material, "Health Care Opeations" and "Public Health and Government Functions", would seem to allow personal info to be distributed to government agencies.

If we don't get a satisfactory answer here, on Monday I may e-mail an employment attorney for whom I formerly worked and ask her. HIPPA regulations are very much a part of her specialty.

Mary D.
  #3  
Unread 06-07-2003, 10:16 PM
Cancer Registry

I wasn't aware of it either. I just did a search for the one in my state and read about the law. It said (paraphrasing) 'the data includes patients' sex, age, dx'. It also said they have an agreement with neighboring states to get the data on patient's with addresses in my state...so I assume name & address is in the file also. It said that the Hospital Association manages the Registry and the data is analyzed by the Dept of Health.

I have to admit to being surprised. I would have thought that names and street adresses would not be included.
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  #4  
Unread 06-07-2003, 10:28 PM
Cancer Registry

Hi seashell -
You are correct about the privacy information practices (I've signed four so far) - it does give permission for government agencies to have access to personal information. I guess what bothers me is that no one mentioned the cancer registry or being required by law to report cancer cases. It isn't like Mad Cow Disease or SARS!!

From what my letter said, most other states do have a cancer registry. I don't know if they, like Oregon, require that each case be reported, or if it is voluntary. This should be interesting....
  #5  
Unread 06-08-2003, 08:19 AM
Cancer Registry

It's an interesting problem isn't it? Whilst most of us would want our dx to help cancer research, we don't want our personal details made public in any way.

After reading your post, moonflower, I tried to find out if we have a similar register here in the UK and came across a really interesting article discussing the dilemma and what would happen to research if consent had to be given to access the data:

http://society.guardian.co.uk/health...472239,00.html

I know that in Sweden they have had a National Family Cancer Database for a number of years and now holds data on more people than there are currently alive in the country. They have data on more than 10 million people and it is proving very valuable in research into all types of cancer.

But have a read of the above article. It might be about the UK specifically but the points it raises are very interesting. One quote from it that brought the problem into perspective for me was:

"Anyone worried about the confidentiality of material relating to their health should be more concerned about the underpaid temporary staff working on the front desk of their local GP surgery than about a group of medical statisticians cooing over a meta-analysis of 50,000 cases of cancer. "

Lydia
  #6  
Unread 06-08-2003, 09:53 AM
Cancer Registry

yes, I have signed that privacy information letter also at the doctors office but I too have never heard of the other. I would really check that out..

Rosalie
  #7  
Unread 06-08-2003, 12:21 PM
National Program of Cancer Registries

The pathology report from my cancer surgery states right above the staging, "tumor registry case." After seeing the statement on the report, I did some research and reviewed the state law as to what specific information is required to be reported. It's been four years since I looked at my state statute, and I can't recall the specifics of what information was required to be reported. The letter you received from the State of Oregon should provide the statute authorizing the cancer registry. If not, you can contact the agency that sent the letter and ask for the citation (or even better ask them to provide you with a copy of the statute itself).

You may be interested in reviewing the website below which discusses the National Program of Cancer Registries, established in 1992 by the enactment of the Cancer Registries Amendment Act. The site states that in 1998, Congress reauthorized the Act, authorizing the CDC to provide funds to the states to improve cancer registries, including setting standards for data completeness, quality, computerization, etc.

Here's the site: http://www.cdc.gov/cancer/npcr/

MoeKay
  #8  
Unread 06-08-2003, 12:23 PM
Cancer Registry

What a weird thing to have to think about. I'm not sure why names would need to be involved, but I would understand why zip codes would. The American Cancer Society statistics document (free on their web site) tracks cases by state, so there would have to be some sort of automatic reporting mechanism. If memory serves, the ACS site notes that next year's stats document will include age ranges for survival statistics. So I guess that info would also have to be reported.

I agree with the quote in I'm Lydia's post -- provided the info isn't used for anything else. One of my dear friends was recently diagnosed as being bipolar, which basically means she takes some meds to help her be a bit more balanced. She's been on COBRA . . . but just found out that she's now only eligible for HIPAA coverage. So, so strange. It seems like such a small, inexpensive health problem compared to those that are facing most of us.

Anyway . . . I got something in the mail about a forthcoming hospital (not mine) seminar about the use of alternative therapies in cancer treatment. While I want to go, I was surprised that my address had been shared. I trust that the organization that shared it was doing so in my best interest, and that the info will not be shared elsewhere. But it was unsettling.
  #9  
Unread 06-08-2003, 01:18 PM
Cancer Registry

Hiya

I learnt from when i went for my 6 week check up with my gyne that i am on the registry. I dont know whether, in the UK, it includes addresses but i shall find out. Im afraid we are statistics and statistics need to be followed up and the only way they can do that is to keep registries.

  #10  
Unread 06-08-2003, 03:04 PM
Cancer Registry

Hello all,
Well, as I stated in my first post, it isn't the registry that I object to, but the fact that I, and it seems like others, were not told that the government requires cancer cases be reported. It seems to me that the doctors should tell us. And I still don’t understand the need to include full name and address. Why not patient XYZ at zip code 12345?

There is an article in today’s San Francisco Chronicle about that fact that medical records are no longer private due to hospitals and physicians sending notes and reports out of the office for transcription. Read it if you dare!

http://sfgate.com/cgi-bin/article.cg...8/**133949.DTL

Moekay - Thanks. The CDC web site was one of the first I checked out when I received the letter. I also checked the Oregon State web site. I am writing them a letter. Will let you know if I get a response.

Sirensong - I too have been receiving brochures about cancer related seminars as well as being inundated with phone calls from various cancer charities asking for money. A friend of mine said she has been getting the same thing since her son was diagnosed with Hodgkin's. She even went as far as calling the hospital to find out who was accessing her son’s records, and of course was told it wasn’t coming from there. Whether it is from the registry or hospital - there is a leak somewhere! I worked for a company in the past that fired an individual who was making extra money selling employee information to recruiting firms! Maybe it's those pesky low paid, disgruntled employees at the front desk!

Lydia - Thanks. I read the article and it was thought provoking. I don’t disagree with much of it. But there is just something about this whole thing that bothers me......wish I could put my finger on it.

SheilaUK - I will be interested to know if the UK includes names and addresses. As for statistics - don’t even get me started! I had a friend who quit her job compiling medical statistics because the researchers were skewing the information to put a positive spin on the data.

Well, enough said. I'm off to enjoy this beautiful afternoon. Will continue my research on this subject later.
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