MedShelf.org is created and maintained by a group of researchers at the University of Michigan's School of Information. However, content is provided by members of participating online medical support communities and the general public. The site has no commercial interests and will not provide any personal information to third parties. All activity on the site is stored and used for research purposes. This is done according to well-established ethical guidelines developed with the University of Michigan's Institutional Review Board. Throughout, the rights and privacy of individuals will be respected. The remainder of this page describes our specific practices.
You can browse MedShelf.org without telling us who you are or revealing any personal information about yourself. As part of our Research Project, we will identify which pages were accessed most frequently, using IP addresses as a measure of reading participation. No IP addresses will be made public or shared with any third parties and data will be presented in aggregate in any publications.
It is possible on some MedShelf.org community wiki's to contribute to the wiki without logging in to the system. In such cases, an IP address is stored and linked to all contributions, which are accessible on a user contribution page and in the Recent Changes page.
Contributors are encouraged to register with the site by creating a username and password, and optionally providing a full name and email address. Registering requires that "cookies" (small files on your hard drive) are enabled. They are used to help identify you and maintain your logged-in status. When registered users contribute to the wiki after they are logged in, their contributions are linked to their username. It is easy to view all contributions from a single user by visiting their user contribution page or recent contributions on the Recent Changes page. Usernames need not be real names. If they do reflect real names, readers of the wiki will be able to track your activity on the site. Even when a username does not reflect a real name, if personal information is provided by you somewhere on the wiki (e.g., on your user page - such as User:DerekHansen), readers of the site will be able to associate the personal information you have provided with your username.
Providing an email address allows the system to email you when pages that you are watching are modified. The email address is not shown publicly anywhere on the site. We will not share the email addresses with any third parties or use them for advertising. We may, however, use them to contact contributors to ask if they would be willing to be interviewed or answer survey questions as part of our research project.
Users who have provided an email address may also directly contact (and be contacted by) other registered users. This is done by using the "Email this user" link on a person's user page. If someone contacts you by using the link, they are not provided with your email address. However, if you send an email to another person using the link then they will be provided with your email address in the "From:" portion of the email message. This allows them to reply to you directly. So, please do not send email to other users unless you are ok with them knowing your email address.
Registered users can create watchlists that help them keep track of pages they are interested in. The watchlist of one user is not accessible by other users. However, we may use the watchlists for research purposes.
Community Email List and Forum content
In addition to analyzing the wiki content, the research project affiliated with MedShelf.org will also be looking at email or forum messages sent to the some of the associated medical support groups. We may also interview individuals and send occasional community surveys. This will only be done after introducing ourselves to the communities via their community email list (or forum) and with the approval of the list owners. When possible, we will associate wiki contributors to email list (or forum) members. This will be done by comparing email addresses and real names (if provided when logging into MedShelf.org). We may also ask individuals to voluntarily provide us with their MedShelf.org usernames and email list addresses so that we can associate them together.
As part of our research project, we will be contacting participants of MedShelf.org and the communities that are affiliated with it. We will do so using the email addresses provided by registered users or addresses from the community email lists (or forums). We may also invite participants to contact us via email by posting a message on the wiki itself.
When contacting others we will always indicate who we are and what we are doing. We will respect the wishes of anyone who does not wish to interact with us. We would need to get parental consent for any direct contact (e.g., private email) with anyone under 18 years old. When we initiate contact, we will make every effort to contact only people who are 18 or older. If you are under 18 and we mistakenly contact you, please ignore our email.
Data retention and use
We will save the data we have collected until we have completed all our analyses. The data will be used in academic conference presentations and published journal articles.
The data that we gather will remain confidential to the extent allowable under local, state, and federal law. We may quote what individuals have said or written. When this is done, we will not refer to the author by name or username. When possible, we will seek permission to include direct quotes from the authors of wiki entries and email/forum messages. We will not include any quotes from authors who indicate that they do not want us to. In all cases, we will not publish any personally identifiable information. Likewise, all numerical data presented in publications will be aggregated so that individuals cannot be identified.
If you have any questions or concerns about our project, please contact Derek Hansen at shakmatt at umich dot edu or by phone at 734.764.1008. You may also contact Paul Resnick at presnick at umich dot edu. If you have questions about your rights as a participant in the MedShelf.org research project, please contact:
Institutional Review Board
540 E. Liberty #202
Ann Arbor, MI 48109
email: irbhsbs at umich dot edu.