[aj04]

What do I believe it should be?

No, see Carey, I crafted my post as a question for someone else to open the can of worms.

I think of a PD advocate friend who is actively trying to organize and energize PwPs in his vicinity, and he is frustrated because he has no access to any kind of registry or mailing list. It would be a great resource for him and ultimately benefit the lives of many PwPs.

But, there is scarcely anything more sacred than a mailing list--ask any org. It's a big deal when they let others use their lists. As it should be. I don't want my email somehow winding up on JohnMcCain's Christmas card list, for example (lol), If anyone has access, you leave yourself open to that which is least noble in people. If only the two committees have access or can give access, that makes the database much like anyone else's email list, subject to the same limitations.

Question 7) What rules should be applied to the use of the database? becomes a critical question to address sooner rather than later.

[indigogo]

AJ - I think it should be made available to patients who are trying to promote a wide variety of projects like your friend.

Would the committees take requests from patients with projects and review them before allowing access to the database?

Would the committee not only administer the "membership list," but also be actively developing an action agenda? Designing surveys? Soliciting ideas from others?

Would the committee solicit the members' opinions on ideas for action? Make the decision making process as wide as possible?

Lots to think about.

I asked you because you are smart.

[SherylJ]

Everyone here is very smart and has fellow PWPs best interest at heart, yet we have as many different opinions as we have people participating in this thread. We all bring our own set of experiences and views of privacy, etc. to bear on the issue.

The broader group would need to develop specific guidelines before we could give any committee the power to grant access to the database and for what purposes. If we want to get the most people signed up that we can, I think we'll have to maintain high levels of security and privacy and let people know this up front.

sheryl

[jeanb]

Carey, I have no idea how message boards are set up.

As far as a database, I think if people are going to sign up, they will want to know who will have access to the data. Specifically - will the info be shared? If yes, with whom?

So ideally I would think it best to be specific about that at the time you publish the database.

[indigogo]

Jean - I agree, access has to be controlled.

What we are building is basically a mailing list - a list that is to be used. People need to know that up front; we're not simply storing data, we're building a voice.

The question becomes who decides for which project it is used?

I think the answer lies back with the people on the mailing list itself, or in the hands of the committees who I hope would consult with the membership.

The data we are collecting is not there to be put on view, but when you say "access" I take that to mean that patients every where will have the opportunity to put forward ideas in order to be able to use the membership list.

[jeanb]

I'm not talking about who decides. I'm saying that when an individual signs on they need to know up front what will happen to their information.

However, if the disclaimer is

"in future we reserve the right to give out your information to groups or for causes that the database owners deem important" (or some such verbiage)

If people sign up knowing that, then I would think that means that the owners have free reign to act as they deem appropriate.

[pegleg]

would this be helpful?
http://epic.org/privacy/tools.html

EPIC Online Guide
to Practical Privacy Tools

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Disclaimer: EPIC does not lobby for, consult, or advise companies, nor do we endorse specific products or services. This list merely serves as a sampling of available privacy-enhancing tools. If you have a suggestion for a tool that you believe should be included, or if you have comments to share regarding one or more of the tools that are already listed, send e-mail to epic-info@epic.org. If you have questions about a tool on this page, visit the affiliated company or individual's Web site for more information.
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[indigogo]

Originally Posted by jeanb

I'm not talking about who decides. I'm saying that when an individual signs on they need to know up front what will happen to their information.

However, if the disclaimer is

"in future we reserve the right to give out your information to groups or for causes that the database owners deem important" (or some such verbiage)

If people sign up knowing that, then I would think that means that the owners have free reign to act as they deem appropriate.

Jean - I agree - I thought I indicated that when I said this:

"What we are building is basically a mailing list - a list that is to be used. People need to know that up front"

You said it much more completely - we need to explicitly get permission -thanks.

Who decides is also an important question.

[jeanb]

I understand your meaning now.

And you are right on -- who decides is very important -- and the people who sign up need to know that too! With whom are they trusting their data?

[Jaye]

Originally Posted by paula_w

Thank you DocJohn - the White Paper exlains it all - outstanding reference for us here. We have all learned bits and pieces, but this puts it all together to describe what we are.

paula

In March 2006 DocTom made an entry entitled "The Voice of the Patient" in his blog (http://www.e-patients.net/archives/patient_networks/) which concluded:

The voice of the patient... the eloquence of the patient to speak up about what they need and want, is so powerful. We haven't invited patients to speak up enough. [We need to provide] a megaphone for the patients. It's [all about] storytelling; it's hearing that this patient was in my hospital and this is what they went through. We need to create a space for patients to talk about things like that. Because, sooner or later, it's going to be me or my child.

Five months later DocJohn took us in. And we wondered why.

RIght now i'm awake at three a.m. wondering why, why didn't someone tell us about e=patients.net? Or did they and I couldn't see? I was all over the internet researching arthritis and PD in every health site that I could see was in any way connected, and I never heard of e-patients before this thread.

I'm going to need some time to think about this.

Jaye