This informed consent statement describes the activities, rights, and benefits of members in the Health Tracking Network.
Purpose
The goals of the Health Tracking Network are to: 1) monitor the level of common illnesses; 2) find factors related to whether a person gets sick with one of these illnesses or stays healthy; 3) study diverse other aspects of health, society, and the mind; 4) give members tools for monitoring their health, fitness, or any other outcome; and 5) raise money for charities selected by members.
Activities
If you join the Health Tracking Network, your participation is completely voluntary. As a member of the Health Tracking Network, your main activity is to respond to anonymous surveys on a repeated basis. When you log in to the Health Tracking Network site, we ask you to complete one or two brief surveys.
One type of brief survey is the Symptom Update. It includes questions about illness symptoms such as coughing, sore throat, fever, vomiting, and diarrhea. It also includes questions about factors that might be releated to whether a person gets sick. The Symptom Update takes about 15 seconds to complete. We will ask you to complete a Symptom Update no more than once a day. If you log in to the Health Tracking Network web site more than once in a day, we will ask you to complete surveys only the first time you log in that day.
The second type of brief survey is the One-Minute Survey. We ask you to complete a One-Minute Survey only once a week. The One-Minute Survey takes about one minute to complete. The questions in this kind of survey vary from week to week. Sometimes the One-Minute Survey includes questions repeated from prior One-Minute Surveys. Other One-Minute Surveys may include questions that focus on your characteristics, experiences, behaviors, attitudes, opinions, perceptions, knowledge, or judgments. No survey questions will be about your sexual behavior, whether you have done something illegal, or other very private matters.
You decide when to participate. It takes a total of about 2 to 3 minutes on average to complete all surveys available in a week.
Eligibility
You can join the Health Tracking Network only if you are 18 years of age or older.
Risk, Stress, and Discomfort
The survey questions we will ask you are not highly sensitive. It is still possible that some questions might make you uncomfortable.
You can choose to stop participating at any time. If you want to stop participating, you have two options. One option is simply not to log in again. A second option is to cancel your membership.
You do not have to answer any question you do not want to answer. Many One-Minute Surveys let you skip particular questions. Symptom Updates and selected other questions cannot be skipped.
Benefits
There are several benefits to participating in the Health Tracking Network: 1) Help society in general monitor the level of common illnesses. These illnesses cause misery, hurt the economy, and sometimes cause death. 2) Help society and yourself learn the factors related to whether a person gets sick. By knowing these factors, you and others might be able to reduce your risk of getting sick. 3) Use personal tracking tools to monitor your health, fitness, or anything else you're interested in. 4) Earn money that you direct to the charities of your choice.
Other Information
If you do not join the Health Tracking Network, there is no penalty or loss of benefits you would otherwise receive. There is also no penalty if you stop participating in the Health Tracking Network.
All members of the Health Tracking Network participate anonymously. We do not collect any information that could identify you individually.
We do not collect your e-mail address so we have no way to contact you. It is very important to keep your login information secure. Do not share your login information with others. If you lose your password or login name, we cannot give it to you. We store this information in a scrambled form that prevents us from doing so. We cannot confirm or deny that you are a member.
When you log in, your login name and password are sent by a secure connection over the Internet. This helps prevent your login information from being read by other computers on the Internet.
The information you put in the personal tracking tools is not linked to your survey responses or other information you have given the Health Tracking Network.
To use the personal tracking tools and earn money for charities, you must complete the brief surveys available when you log in.
There are two types of One-Minute Surveys: unlinked and linked. For a "linked" One-Minute Survey, your answers will be linked to your Symptom Updates and demographic information.
For an "unlinked" survey, your answers will be added to simplified versions of your demographic characteristics (for instance, your age as a 10- or 20-year range). Once you complete an "unlinked" survey, your answers cannot be linked to your more detailed demographic characteristics and Symptom Updates. Answers to different "unlinked" surveys cannot be linked to each other.
Some "unlinked" One-Minute Surveys may in the future be sponsored. For a sponsored survey, a research client pays the Health Tracking Network for the chance to ask survey questions. Half (50%) of the fees that research clients pay is for donations to charities by members. Every one to three months, we ask members to pick a charity to receive their portion of the donations. A member's portion is based on how many surveys he or she completes during that period.
Your answers to "unlinked" One-Minute surveys may be included in public data archives. Other researchers may analyze these data further. Your answers to Symptom Updates, "linked" One-Minute Surveys, and your demographic information may also be put in public data archives. The demographic information included would also be simplified. The information put in the public data archives will not allow you to be identified individually.
You can access results from the Symptom Updates and One-Minute Surveys on the Health Tracking Network web site.
If this Informed Consent statement is changed significantly, you will be notified after logging in.
If you have any questions, complaints, or concerns about your participation, you can contact Health Tracking Network staff.
e-mail: via http://www.healthtracking.net/contact.php or through your Member Central page
post: Health Tracking Network, P.O. Box 15110, Seattle, WA 98115, USA
fax: +1-815-301-8854
telephone: +1-206-985-2398
Statement effective as of December 6, 2011
