KN Confidentiality and Privacy Protections Doc for IRBs

Government & Academic Research

Knowledge Networks Company Information,

Past External Review, Confidentiality and Privacy Protections for Panelists

Documentation for Human Subject Review Committees

Prepared by J. M. Dennis Updated November 11, 2009

Table of Contents

Knowledge Networks Company Information 2

KnowledgePanel® Methodology 4

Confidentiality and Privacy Protections 6

Confidentiality Agreement with Panelists 6

Obtaining Consent for Specific Online Surveys 7

Procedures for Obtaining Consent for Surveys with Minors 7

Standard Email Invitation Sent to KnowledgePanel® Respondents 8

Other Respondent Materials 8

Data and Record Storage 8

Respondent Incentives for KnowledgePanel® 10

Conditions for Research Subjects for Continued Participation on KnowledgePanel® 10

Adverse Event Reporting and Panelists’ Communications with PIs and IRBs 11

External Review 12

List of Institutions Whose Human Subject Review Committees Have Reviewed KN Study Procedures 12

List of Funding Agencies & Organizations for KN-Conducted Research 13

List of KN-Conducted Studies Reviewed by the U.S. Office of Management and Budget 14

Contact Information for any Questions 15

Attachments 16

Attachment A: Knowledge Networks Privacy Statement 16

Our Privacy Commitments 16

Attachment B: KnowledgePanel® Recruitment Advance Letter 23

Attachment C: Recruitment Module in Recruitment Interview Script: Obtaining Parental/Legal Guardian Consent to Include Teens Age 13 to 17 for KnowledgePanel® Surveys 24

Attachment D: KnowledgePanel® Survey-Specific Online Consent Form: Obtaining Informed Consent from Parents & Legal Guardians for Conducting Survey with Teens Age 13 to 17 25

Attachment E: KnowledgePanel® Survey-Specific Online Consent Form: Obtaining Informed Consent from Teen Research Subjects (Age 13 to 17) 26

Introduction

A core Knowledge Networks (KN) capability is our nationwide online panel, known as KnowledgePanel^®.¹ Bringing unprecedented reliability and statistical projectability to online research, KnowledgePanel is the only online panel that is representative of the U.S. population. By combining probability-based sampling and the Internet's many advantages as a research medium, KnowledgePanel incorporates the views and opinions of all Americans. Thus, KnowledgePanel provides the highest level of accuracy and representation available on the web today – a degree of reliability essential to accurate measurement of public opinion.

In our procedures in building and maintaining KnowledgePanel, we respect the principle of voluntarism as described in the Belmont Report. Participation in research is voluntary at the time that respondents are asked to join the panel, at the time they are asked to participate in any particular survey, and at the time they answer any given question in a survey. KN panelists are not coerced to participate in any research and are not removed from the panel as a result of failure to participate in any particular survey project or program of studies. KN panelists have the option to ‘opt-out’ of the panel at any time by notifying Knowledge Networks. Knowledge Networks maintains a toll-free phone number and its own call-center panel management facility to receive requests for information and action from panelists.

Knowledge Networks Company Information

Two prominent Stanford University professors, most notably Norman Nie, founded Knowledge Networks in 1998 as an answer to using the capabilities of the Internet to develop research methodologies for the next century. Since its founding, the company quickly grew into a leading public policy, non-profit and academic research firm as well as one of the top consumer insight marketing and media research providers, including numerous Fortune 500 and public sector clients

KN maintains offices in CA, IL MA, NY, NJ, and OH; and has approximately 155 full-time employees.

Knowledge Networks is proud to be a member or participate in the activities of the following industry associations:

• American Association for Public Opinion Research (AAPOR)

• Council of American Survey Research Organizations (CASRO)

• Council for Marketing and Opinion Research (CMOR)

• The Advertising Research Foundation (ARF)

The key staff responsible for government, academic, and non-profit research each bring expertise from long careers in designing and conducting surveys sponsored by the Federal Government and major universities. This staff has also participated in methodological research on data collection mode effects, nonresponse bias, and panel effects.

Knowledge Networks has applied and been approved for research by NIH having been given an NIH Federalwide Assurance Number FWA00004571.

J. Michael Dennis, the Senior Vice President for Government & Academic Research at KN, has completed human subjects training from the NIH, University of California (Irvine), and Stanford University. Other key staff has also completed human subjects training as required by NIH and university IRBs.

Key Company Information:

General Manager:

J. Michael Dennis, Ph.D.,

Senior Vice President, Government & Academic Research

Knowledge Networks, Inc.

1350 Willow Road, Suite 102

Menlo Park, California 94025-1516

(650) 289-2160

(650) 289-2001

[email protected]

SIC code: 8732

NAICS Code: 541910

DUNS #: 048410489

CA Congressional District: #15

FWA Assurance Number: FWA00004571

KnowledgePanel® Methodology

Knowledge Networks has recruited the first online research panel – KnowledgePanel^®– that is representative of the U.S. population. Panel Members are randomly recruited by telephone and mail surveys, and households are provided with access to the Internet and hardware if needed. Unlike other Internet research panels sampling only individuals with Internet access volunteering for research, KnowledgePanel is based on a sampling frame which includes both listed and unlisted numbers, those without a landline telephone and is not limited to current Internet users or computer owners, and does not accept self-selected volunteers.

Knowledge Networks selects households using random-digit dialing (RDD) or by using address-based sampling. Once a person is recruited to the panel, they are contacted primarily by e-mail (instead of by phone or mail). This permits surveys to be fielded very quickly and economically. In addition, this approach reduces the burden placed on respondents, since e-mail notification is less obtrusive than telephone calls. Most respondents also find answering Web questionnaires to be more interesting and engaging than being questioned by a telephone interviewer.

Knowledge Networks’ panel recruitment methodology uses the same or similar quality standards established by selected RDD surveys and area probability surveys conducted for the Federal Government (such as the CDC-sponsored National Immunization Survey).

Until recently, KnowledgePanel’s probability-based recruitment had been based exclusively on a national random-digit dial (RDD) frame. In 2009, Knowledge Networks added address-based sample (ABS) frame (to supplement the RDD frame) in response to the growing number of cell-phone only households that are outside of the RDD frame. ABS involves probability-based sampling of addresses from the U.S. Postal Service’s Delivery Sequence File. Randomly sampled addresses are invited to join KnowledgePanel through a series of mailings and in some cases telephone refusal conversion calls when a telephone number can be matched to the sampled address. Invited households can join the panel by one of several means: by completing and mailing back a paper form in a postage-paid envelope; by calling a toll-free hotline maintained by Knowledge Networks; or by going to a designated KN Web site and completing the recruitment form at the website. After initially accepting the invitation to join the panel, respondents are then profiled for demographics and maintained on the panel using the same procedures established for the RDD-recruited research subjects. Respondents sampled from the RDD and ABS frames are provided the same privacy terms and confidentiality protections.

For the RDD-based sampling, Knowledge Networks utilizes list-assisted RDD sampling techniques on the sample frame consisting of the entire United States residential telephone population. Knowledge Networks excludes only those banks of telephone numbers (each consisting of 100 telephone numbers) that have zero or one directory-listed phone numbers. Two strata are defined using 2000 Census Decennial Census data that has been appended to all telephone exchanges. The first stratum has a higher concentration of Black and Hispanic households and the second stratum has a lower concentration of these groups relative to the national estimates. Knowledge Networks’ telephone numbers are selected with equal probability of selection for each number within each of the 2 strata, with the higher concentration Black and Hispanic stratum being sampled at approximately twice the rate of the other stratum. Note that the sampling is done without replacement to ensure that numbers already fielded by Knowledge Networks do not get fielded again.

Knowledge Networks is able to recover a valid postal address for about 60%-70% of all telephone numbers in its samples. The telephone numbers for which an address is recovered are selected with certainty; between one-half and one-third of the remainder was subsampled randomly depending on the recruitment period up until July 2005. In May 2007, sub-sampling at a rate of 0.75 of non-address households was implemented. The households for which we have an address-matched telephone number are sent an advance mailing informing them that they have been selected to participate in KnowledgePanel 7 to 9 days prior to the recruitment telephone call.

Following the advance letter, the telephone recruitment process begins for all sampled phone numbers. Cases sent to telephone interviewers are dialed up to 90 days, with at least 10 dial attempts on cases where no one answers the phone, and on phone numbers known to be associated with households. Extensive refusal conversion is also performed. Experienced interviewers conduct all recruitment interviews. The recruitment interview, which typically requires about 10 minutes, begins with the interviewer informing the household member that they have been selected to join KnowledgePanel^®.

In addition to the above-documented English-based panel recruitment, in 2008 we constructed KnowledgePanel Latino^SM to provide researchers a capability to conduct representative online surveys with U.S. Hispanic community. Prior to the advent of KnowledgePanel Latino, there did not exist in the U.S. an online panel that represents both the internet and non-Internet Hispanics, and that was representative of that part of the U.S. population able to participate in Spanish-only surveys. The sample for the KnowledgePanel Latino is recruited by a hybrid telephone recruitment design, based on a random-digit dialing sample of U.S. Latinos and Hispanic-surname sample. It is a geographically balanced sample that covers areas that, when aggregated, encompasses approximately 93% of the nation’s 45.5 million Latinos.

The first RDD recruitment to KnowledgePanel was conducted in 1999. At that time, all households recruited were given a WebTV to use for answering surveys. In August 2002, KN began allowing households to use their own computers connected to the Internet for taking surveys. At this time, recruited households were no longer sent a WebTV if they reported having access to the Internet. Currently, if a household does not have a computer and/or access to the Internet from home, work or school, they are told that in return for completing a short survey weekly, the household will be given a device (a WebTV or Laptop) and free monthly Internet access. All members in the household are then enumerated, and some initial demographic variables and background information of prior computer and Internet usage are collected.

Knowledge Networks attempts to recruit to KnowledgePanel every household member who is 13 years of age or older. For household members aged 13 to 17, we collect consent from the parents or the legal guardian during the initial recruitment interview. If no consent is given, no further direct communication to the teenagers will be attempted.

Prior to shipment, each WebTV or Laptop is custom configured with individual email accounts so that it is ready for immediate use by the household members. Most households are able to install the hardware without additional assistance, though Knowledge Networks maintains a telephone technical support line and will, when needed, provide on-site installation. Panel members may contact the Panel Member Support Department for questions using a toll-free number. The Panel Member Support Department is available Monday-Friday 9AM-12AM EST and Sat-Sun 12PM-8PM EST. The Support Department also contacts household members who do not respond to survey invitations and attempts to restore contact and cooperation. Panel members who have Internet access provide Knowledge Networks with their email accounts and their weekly surveys are sent to that email account.

All new non-Internet panel members are sent an initial survey to confirm equipment installation. For all new panel members, demographic information such as gender, age, race/ethnicity, income, and education are collected in a follow-up survey. This information can be used to determine eligibility for specific studies. This information also eliminates the need for gathering basic demographic information on each panel survey. Once this survey is completed, the panel member is regarded as active and ready to be sampled for other surveys.

Confidentiality and Privacy Protections

The documents described in this section related to communications to human subjects are provided in English to English speakers and in Spanish for respondents recruited for KnowledgePanel Latino. The documents shown in this section are in English. The Spanish Language documents are available upon request.

Confidentiality Agreement with Panelists

The KN recruitment and empanelment process is designed to comply with CAN-SPAM and CASRO guidelines. Survey responses are confidential, with identifying information never revealed without respondent approval. When surveys are assigned to KnowledgePanel Members, they receive notice in their password protected e-mail account that the survey is available for completion. Surveys are self-administered and accessible any time of day for a designated period. Participants can complete a survey only once. Members may leave the panel at any time, and receipt of the laptop and Internet service is not contingent on completion of any particular survey.

All KN panelists, when joining the panel, are given a copy of the Privacy and Term of Use Policy. The privacy terms are also available electronically at all times to panelists via the Panel Member website. The Privacy and Terms of Use Policy is posted at http://www.knowledgenetworks.com/info/about/privacy.html and is shown as Attachment A.

Each KnowledgePanel members age 18 years of age or older can be categorized into one of four types:

1. Primary respondent living in household with own Internet access;

2. Non-Primary respondent living in household with own Internet access;

3. Primary respondent living in household without their own Internet access; and

4. Non-Primary respondent living in household without own Internet access.

Primary respondent denotes individual with whom Knowledge Networks communicates directly during the recruitment process, while the non-primary respondent is any other adult living in the same household as the primary respondent. For primary respondents, consent to receive survey invitations from KnowledgePanel is obtained during the recruitment process when the primary respondents gives their email addresses or shipping addresses to receive computer or WebTV. They will then be asked to complete the “Core Profile Survey” which collects basic personal demographic information. Primary respondents will NOT receive invitations to client surveys if they do NOT complete the “Core Profile Survey.”

For non-primary respondents living in households with their own Internet access, consent is received during the initial online survey when they indicate “Yes” to the question: “Now that you know a little more about Knowledge Networks and KnowledgePanel, would you like to join and have your opinion heard?” Similar to primary respondents, they will then be asked to complete the “Core Profile Survey” and will receive invitations to client surveys only after completing the “Core Profile Survey.”

For non-primary respondents living in household without their own Internet access, Knowledge Networks supplies email inboxes for each individual as enumerated by the primary respondents. Following similar process as other types of panel members, these panelists will be asked to complete the “Core Profile Survey” and will not receive invitations to client surveys if they do not complete this survey.

Consent for KnowledgePanel Members aged between 13 to 17 years old is obtained from the primary respondents during the recruitment process. The specific questions are:

Question 1: Are you the parents or guardian of xxx?

Question 2: Do you give consent for xxx to receive surveys from KnowledgePanel?

Only if the answers to both questions are “yes” will KnowledgePanel ask for the email address or create the email address for the teen to be sent KnowledgePanel surveys.

Obtaining Consent for Specific Online Surveys

On rare occasions, Human Subjects Review Committees have required that KN obtain informed consent for a specific survey. When required to do so, KN recommends that the below form be used to obtain online consent before self-administration of the survey itself.

Recommended Online Consent Form for Sensitive Item Studies

Thank you for continuing to be part of the KnowledgePanel®. This survey asks about [FILL IN CONTENT TOPIC].

This survey is being conducted by [ORGANIZATION / NOTE FUNDER IF APPOPRIATE]. The study will help researchers understand [RESEARCH OBJECTIVES].

As with all Knowledge Networks surveys, your response to this survey, or any individual question on the survey, is completely voluntary. You will not be individually identified and your responses will used for statistical purposes only.

If you have questions about your rights as a participant in this survey, or are dissatisfied at any time with any aspect of the survey, you may contact Knowledge Networks at 800-782-6899.

[CONTINUE]

(THIS IS A BUTTON THAT TAKES RESPONDENT TO SURVEY)

Procedures for Obtaining Consent for Surveys with Minors

For surveys to be conducted with teens age 13 to 17, KN has on some occasions been required to obtain informed consent from both the parents and legal guardians as well as from the teen research subjects themselves. This has occurred when the survey questionnaire involves items deemed highly sensitive by the IRB. In other situations, online informed consent has not been required in a study-specific request. In these cases, the procedure that KN employs for obtaining consent at the time of panel recruitment is deemed sufficient. In that procedure employed during the panel recruitment interview, the parent or legal guardian of teens is asked for permission for KN to conduct online surveys.

Consent to survey KnowledgePanel Members age 13 to 17 years old is obtained from the primary respondents during the recruitment process. The specific questions are:

Question 1: Are you the parents or guardian of xxx?

Question 2: Do you give consent for xxx to receive surveys from KnowledgePanel?

Only if the answers to both questions are “yes” will KnowledgePanel ask for the email address or create the email address for the teen to be sent KnowledgePanel surveys.

There are three attachments to this document on this topic:

Attachment C: Recruitment Module in Recruitment Interview Script for Obtaining Parental/Legal Guardian Consent to Include Teens Age 13 to 17 for KnowledgePanel Surveys

Attachment D: Survey-Specific Online Consent Form for Obtaining Informed Consent from Parents & Legal Guardians For Conducting a Survey with Teens Age 13 to 17

Attachment E: Survey-Specific Online Consent Form for Obtaining Informed Consent from Teen Research Subjects (Age 13 to 17)

Standard Email Invitation Sent to KnowledgePanel® Respondents

Below is the standard email invitation that KN uses for inviting respondents to participate in KnowledgePanel surveys. The email invitation below has text-substitution fills that are filled in by the survey system. The “ANO” is the project survey number embedded in the survey invitation subject line; this email subject line may be customized for the specific survey project. The text of the email may also be customized for the specific project.

Standard Email Invitation

SUBJECT LINE: Your Latest KnowledgePanel Survey (%%ANO%%).

TEXT OF EMAIL: Dear %%firstname%%,

 

Thanks for being an integral part of KnowledgePanel®!  Your latest survey can be accessed by clicking the following link:

 

">Click Here to Start Survey<

 (If it does not work automatically from email, please copy the below link to your Internet browser).

 %%Link%%

 

Our Panel Member Support Center is available if you have questions or comments.  You can contact us at our toll free 1-800-782-6899 number, or simply reply to this email invitation.  In order to better serve you, please be sure to include reference <span class="bold">#(%%ANO%%)</span> in the Subject of your message.  We are always happy to hear from you!

 

Thanks,

KnowledgePanel Support Team

http://www.knowledgepanel.com">www.knowledgepanel.com

This email was intended for %%firstname%%.

Other Respondent Materials

Attachment B is the content of the advance letter mailed to respondents prior to contacting the household by phone. The letter is mailed to sampled cases for which an address can be identified.

Data and Record Storage

All personally identifying records are kept secured in a separate office in the Informational Technology section of the main offices in Menlo Park, CA, and all data transfers from WebTV units and personal computers (both used for survey administration) to the main servers pass through a firewall. Knowledge Networks never provides any respondent personal identifiers to any client or agency without the explicit and informed consent provided by the sampled Panel Members. Unless explicitly permitted as documented in a consent form, no personally identifying information will be provided to any parties outside Knowledge Networks in combination with the survey response data.

All electronic survey data records are stored in a secured database that does not contain personally identifying information. The staff members in the Panel Relations and Statistics departments, who have access to the personally identifying information, do not have access to the survey response data, with the exception of the aforementioned database and IT administrators who must have access to maintain the computer systems, do not have access to the personally identifying information. The secured database contains field-specific permissions that restrict access to the data by type of user, as described above, preventing unauthorized access.

The survey response data are identified only by an incremented ID number. The personally identifying information are stored in a separate database that is accessible only to persons with a need to know, as described above.

The survey data extraction system exports only anonymized survey data identified only by the Panel Member ID number. The data analysts with access to the survey data extraction system, as they do not have access to personally identifying information, cannot join survey data to personally identifying data. Panel Relations and Statistics staff members do not have access to the survey data extraction system, and therefore cannot join survey data to personally identifying data.

As part of our work in conducting conducted in support of FDA applications, Knowledge Networks has implemented Good Clinical Practice guidelines to assure compliance with FDA requirements for systems documentation and privacy of stored survey data. Consequently, a system of standard operating procedures is in place for documenting all processes relating to maintaining confidentiality and privacy of the identities of Panel Members.

Knowledge Networks retains the survey response data in its secure database after the completion of a project. These data are retained for purposes of operational research, such as studies of response rates and for the security of our customers who might request at a later time additional analysis, statistical adjustments, or statistical surveys that would require re-surveying research subjects as part of validation or longitudinal surveys.

Respondent Incentives for KnowledgePanel®

Respondent incentives are provided of two types: survey specific and non-survey specific incentives. Below we describe each briefly.

Non-specific survey incentives are used to maintain a high degree of panel loyalty and to prevent attrition from the panel. For the households provided Internet appliances and an Internet connection, their ‘panel loyalty’ incentive is the hardware and Internet service that KN provides free. For households using their own personal computers and Internet service for survey participation, Knowledge Networks enrolls the panelists into a points program that is analogous to a ‘frequent flyer’ program, in that respondents are credited with points in proportion to their regular participation in surveys. Panelists receive cash-equivalent checks approximately every four to six months in amounts reflecting their level of participation in the panel, which commonly results in distributions in the range of $4 to $6 per month.

Survey-specific incentives are provided to respondents as a result of one of two conditions: 1) the survey is expected to require more than 20 minutes of time to complete; or 2) there is an unusual request being made of the respondent, such as specimen collection, the viewing of a specific television program, or completion of a daily diary. In both of these kinds of circumstances, panelists are being asked to participate in ways that are more burdensome than initially described to respondents during the panel recruitment stage. If a survey requires more than 20 minutes for self-administration, then an incentive is provided to respondent for most projects. Respondents that participate in the survey will be credited with 5,000 to 10,000 points, which equates to $5 to $10 that will be mailed to them at a later date. The actual amount depends upon the length of the survey.

A by-product of the use of survey-specific incentives is an improvement in the survey completion rate. Internal KN research has demonstrated that incentives increase the survey completion rate by approximately four to six percentage points, after controlling for other survey-specific factors such as the length of the survey instrument, length of the field period, sample composition, use of video, etc.

Conditions for Research Subjects for Continued Participation on KnowledgePanel®

Members of KnowledgePanel are not required to participate in any particular survey in order to be eligible for and remain KN panelists. Participation in each survey is voluntary, as described in the Privacy Terms provided to all panelists and published on the KN Panel Member website. However, if a member of KnowledgePanel does not participate in eight consecutive surveys, then KN has the option to remove this person from the panel. Prior to removing the panelist, KN sends e-mails and attempts telephone contact with the panelist to encourage them to participate. When a panelist is removed from KnowledgePanel, KN requests that he/she returns any Internet-enabling equipment that we sent to the household. KN provides a shipping label to the Panel Member, so that the panelist will not have any costs in returning the equipment to KN.

Adverse Event Reporting and Panelists’ Communications with PIs and IRBs

KN has a system in place whereby members of KnowledgePanel may call a KN-maintained and staffed panel relations hotline for communicating with KN about any questions or problems related to a study. This hotline is staffed by the KN Panel Member Support Center. The hotline is a toll-free phone number that is provided in the Privacy Terms, the study email invitation, and in many other communications with panelists. In addition, there is an email address for panelists to communicate with KN. KN logs into a panel relations database for each contact made or received.

It is common for Institutional Review Boards to request that KN provide panelists with the ability to contact the Principal Investigators or the study IRB to report any problems or ask study questions about a specific study. When KN implements this reporting function, if a participant in the study contacts Knowledge Networks with a question or concern about the study, Knowledge Networks will provide the participant with contact information for the principal investigators and the IRB. Moreover, should there be any adverse event or serious problem reported to Knowledge Networks by a study participant, Knowledge Networks will promptly notify the investigators.

External Review

List of Institutions Whose Human Subject Review Committees Have Reviewed KN Study Procedures

Below is a list of selected institutions whose Institutional Review Boards have reviewed and approved study protocols for conducting web panel surveys on KnowledgePanel®.

Abt Associates Arizona State University Baylor University Boston College Brigham Young University Bryn Mawr University Colorado State University Cornell University Duke University George Mason University Georgetown University Georgia Institute of Technology Indiana University Harvard University Johns Hopkins University M.I.T. Michigan State University New York University North Carolina State University Ohio State University Penn State University

Princeton University Research Triangle Institute Stanford University University of British Columbia University of California, Berkeley University of California, Irvine University of California, Los Angeles University of Chicago University of Illinois University of Kentucky University of Maryland University of Michigan University of Minnesota University of Notre Dame University of Pennsylvania University of Tennessee University of Texas, Austin University of Virginia University of Wyoming Vanderbilt University Yale University

List of Funding Agencies & Organizations for KN-Conducted Research

Below is a partial list of funding agencies and organizations that have supported research conducted by Knowledge Networks and whose organizations reviewed the study protocols implemented by Knowledge Networks.

American Bar Foundation

American Legacy Foundation

Annenberg Foundation Trust at Sunnylands

California Air Resources Board

California, Dept of Public Health, Tobacco Control Section

Chicago Council on Global Affairs

Ford Foundation

Gates Foundation

March of Dimes

Markle Foundation

John T. & Catherine D. MacArthur Foundation

National Bureau of Economic Research

National Cancer Institute

National Institute on Aging

National Institutes of Health

National Institute of Alcohol Abuse and Alcoholism

National Institute of Mental Health

National Science Foundation

Pew Charitable Trust

Robert Wood Johnson Foundation

Rockefeller Foundation

Russell Sage Foundation

Alfred P. Sloan Foundation

Social Security Administration

Templeton Foundation

United Way

U.S. Department of Agriculture, Economic Research Service

U.S. Air Force

U.S. Centers for Disease Control & Prevention

U.S. Department of Defense, Joint Advertising Market Research & Studies

U.S. Department of Health & Human Services, Health Resources and Services Administration

U.S. Department of Health & Human Services, Office of Population Affairs

U.S. Environmental Protection Agency

U.S. Food & Drug Administration

U.S. National Oceanic and Atmospheric Administration

U.S. Department of Veterans Affairs, Center on the Demography and Economics of Health and Aging

U.S. Internal Revenue Service

List of KN-Conducted Studies Reviewed by the U.S. Office of Management and Budget

Below is a list of studies reviewed by OMB where KN conducted the survey research.

Contact Information for any Questions

Please contact J. Michael Dennis at Knowledge Networks to address any questions about this document and KN protocols for the protection of human subjects.

J. Michael Dennis

Senior Vice President

Government & Academic Research

(650) 289-2160

[email protected]

1350 Willow Road, Suite 102

Menlo Park, California 94025-1516

Main: 650-289-2000

Fax: 650-289-200

Attachments

Attachment A: Knowledge Networks Privacy Statement

Knowledge Networks Panel Members have been invited to take part in a major national research effort. Members may complete surveys to provide feedback and opinions on a range of political, lifestyle, advertising and other questions, and may contribute other types of data along with other Panel Members. Active Panel Members receive certain benefits from Knowledge Networks in exchange for participating in surveys.

Our Privacy Commitments

Knowledge Networks respects the privacy of every Panel Member. This Privacy Statement outlines the information Knowledge Networks will collect and how we will use that information. This Statement will also tell you how you can verify the accuracy of your Personal Information (defined below) submitted to Knowledge Networks and how you can request that we delete or update your Personal Information.

We've developed our privacy policy from industry guidelines and standards, and local, national, and international laws and requirements. All privacy practices and methods described in this policy apply only insofar as permitted by the applicable standards, laws and requirements. In addition, as a member of the Council of American Survey Research Organizations (“CASRO”), the professional trade association of survey research companies, Knowledge Networks adheres to the mandated CASRO Code of Standards and Ethics for Survey Research. You may visit CASRO, and view the CASRO Code, at www.casro.org.

Thanks again for placing your trust in Knowledge Networks.

Knowledge Networks is a licensee of the TRUSTe Privacy Program. TRUSTe is an independent, non-profit organization whose mission is to build user’s trust and confidence in the Internet by promoting the use of fair information practices. This privacy statement covers the site www.knowledgenetworks.com. Because this Web site wants to demonstrate its commitment to your privacy, it has agreed to disclose its information practices and have its privacy practices reviewed for compliance by TRUSTe.

If you have questions or concerns regarding this statement, you should first contact Privacy Compliance Coordinator at [email protected]. If you do not receive acknowledgement of your inquiry or your inquiry has not been satisfactorily addressed, you should contact TRUSTe at http://www.truste.org/consumers/watchdog_complaint.php. TRUSTe will then serve as a liaison with us to resolve your concerns.

The TRUSTe program covers only information that is collected through this Web site, and does not cover information that may be collected through software downloaded from this site.

Information Collected and How We Use It:

What We Collect

A) Personal and Demographic Information

During the Knowledge Networks recruitment process, Knowledge Networks collects personal information such as your name, address, email address and the names and ages of members of your household (“Personal Information”) via telephone. In addition, Knowledge Networks frequently asks Panel Members for characteristics (such as health problems or consumer habits), attributes, and demographic information (such as age, income, gender) (collectively, “Demographic Information”) via online surveys.

You are in control of the Personal Information and Demographic Information that you provide to Knowledge Networks. We rely on you to provide updates to your Personal Information and Demographic Information. You can:

 Ask for a copy of your Personal Information or Demographic Information.

 Ask for your Personal Information or Demographic Information to be corrected or updated.

 Ask us to remove your Personal Information or Demographic Information from your records.

To do this, please contact us using the links provided later in this statement. Knowledge Networks will use reasonable efforts to provide the requested information to you.

B) Operating Information I believe the item in yellow is no longer in play and should be dropped

Knowledge Networks may, in the course of interacting with Panel Members, gather other types of information from Panel Members (“Operating Information”). For example, as a Knowledge Networks Panel Member, you will receive surveys from Knowledge Networks on a regular basis. These surveys will ask questions about your interests, needs, and attitudes. We will receive your responses to these surveys. If you have agreed to provide us with information regarding the television channels that you select for viewing through the MSN^ TV Network service, then Knowledge Networks will receive this information from MSN^ TV. Similarly, if we offer other features, services, or programs in which you explicitly agree to participate, then Knowledge Networks will receive information from those features, services, or programs.

C) Log Files

As is true of most Web sites, we gather certain information automatically and store it in log files. This information includes Internet protocol (IP) addresses, browser type, Internet service provider (ISP), referring/exit pages, operating system, data/time stamp, and clickstream data.

We use this information, which does not identify individual users, to analyze, trends, to administer the site, to track users’ movements around the site, and to gather demographic information about our base as a whole.

We do not link this automatically-collected data to personally identifiable information.

D) Cookies

A cookie is a small text file that is stored on a user’s computer for record-keeping purposes. We use cookies on this site. We do not link the information we store in cookies to any personally identifiable information you submit while on our site.

We use persistent cookies. A persistent cookie remains on your hard drive for an extended period of time. You can remove persistent cookies by following directions provided in your Internet browser’s “help” file.

If you reject cookies, you may still use our site, but your ability to use some areas of our site, such as contests or surveys, will be limited.

How We Use Your Information:

A) Personal and Demographic Information

Personal Information may is used to set up e-mail accounts for each household member who is 13 years of age or older (if you do not have Internet access at the time of recruitment), to communicate with you and your household members, and to assist you with questions that you may have about the Knowledge Networks Panel. It may also be used for panel recruitment, contest entry processing or delivery of free gifts to members of the Knowledge Networks Panel, and delivery of our quarterly newsletter, which you are automatically enrolled to receive via email. (To opt out of the newsletter, please click here: http://members.knowledgenetworks.com/Profile.aspx.)

Personal Information concerning location or address is also used to ensure that our panel accurately represents the country’s population as a whole.

Panel Members are asked for Demographic Information in order to pre-qualify members or households for surveys that target specific groups. We also use this information to ensure that our panel accurately represents the country’s population as a whole.

Knowledge Networks uses Personal Information and Demographic Information solely in the conduct of its research business. Personal Information or Demographic Information may be combined with information collected about you by Knowledge Networks or third parties with your express permission, with information that is collected about you from public records, or with information that Knowledge Networks may acquire from third parties that have a legal right to provide such information to Knowledge Networks.

B) Operating Information

Knowledge Networks uses Operating Information solely in the conduct of its research business. As is the case with Personal Information and Demographic Information, Operating Information may be combined with information collected about you by third parties with your express permission, with information that is collected about you from public records, or with information that Knowledge Networks may acquire from third parties that have a legal right to provide such information to Knowledge Networks.

Data Sharing and Transfer

A) How We May Share Information

Personal Information regarding Panel Members will never be shared with any third parties without your express permission. We reserve the right, however, to disclose your personally identifiable information as required by law and when we believe that disclosure is necessary to protect our rights and/or comply with a judicial proceeding, court order, or legal process served on our Web site. In addition, occasionally Knowledge Networks will share contact information, such as name and address, with third parties with whom we have partnered to provide specific services to Knowledge Networks, or services on behalf of Knowledge Networks, such as panel recruitment, contest entry processing or delivery of free gifts to Knowledge Networks Panel Members. These partners have agreed not to share or resell this data and they are contractually obligated not to use any personally identifiable information except for the purpose of providing these services, unless you enter into a relationship with them that would directly allow them to do so.

Knowledge Networks collects and shares Demographic Information and Operating Information with its research clients in an anonymous form. Our research clients will never receive Personal Information of Panel Members, nor will they be able to identify Panel Members, without your express permission.

Knowledge Networks is an expanding business, and like other companies, we sometimes acquire or divest business units. As part of such transfers, we may convey the business assets of the particular business unit, including Personal Information, Demographic Information, or Operating Information of Panel Members. In that eventuality, you would be notified via email.

B) Data Transfers

Your Personal Information, Demographic Information, and Operating Information will generally be stored in our Knowledge Networks databases, which are located in the United States. For easier processing of e-mail communications, contests, sweepstakes, or other marketing purposes, however, your Personal Information, Demographic Information, or Operating Information may be sent, usually on a temporary basis, to countries outside the United States or the European Union. Knowledge Networks data protection standards are the same, regardless of where your information is stored.

Knowledge Networks adheres to United States/European Union Safe Harbor principles. If you feel that Safe Harbor privacy principles may have been violated by Knowledge Networks, you may contact Knowledge Networks or CASRO, 3 Upper Devon, Port Jefferson, NY 11777 (email: [email protected]) (telephone: 631-928-6954) with your complaint. Knowledge Networks is a member of CASRO.

Children’s Privacy

Knowledge Networks believes that it's especially important to protect children's privacy online and encourages parents and guardians to spend time online with their children to participate and monitor their Internet activity.

Knowledge Networks complies with all applicable national and international children's privacy regulations.

We do not permit children who are under 13 years of age to become Knowledge Networks Panel Members. We do not collect any Personal Information from children under 13 years of age. As part of the registration process for new Panel Members, we collect from the new Panel Member the names of each individual in the Panel Member’s household, which may include the names of children who are under 13 years of age. Occasionally we may send a survey to a Panel Member who is a parent or guardian of a child under the age of 13 that asks that Panel Member to have his or her child who is under 13 answer the survey. We take reasonable steps to ensure parental consent to such procedure by sending the survey to the parent or guardian’s password-protected email address. The information collected in response to such surveys is not combined with identifying information about the child. In every case such survey does not collect Personal Information about the child. We comply with the Children’s Online Privacy Protection Act of 1998.

If a Panel Member has provided us with Personal Information about a child in the Panel Member’s household who is under the age of 13, a parent or guardian of that child may contact us at the email address or mailing address listed at the bottom of this Privacy Statement if he or she would like this information deleted from our records. We will use reasonable efforts to delete the child's information from our databases.

If you would like to contact us about your or your child's Personal Information, or to find out how you can have your child's Personal Information removed from our database, please see the “Access To Your Information and Complaints” section later in this document.

Data Security and Responsibility

Knowledge Networks is committed to keeping the data you provide us secure and will take reasonable precautions to protect your Personal Information from loss, misuse or alteration. Vendors, contractors, or partners of Knowledge Networks who have access to your Personal Information in connection with providing services for Knowledge Networks are contractually required to keep the information confidential and are not permitted to use this information for any other purpose than to carry out the services they are performing for Knowledge Networks.

Knowledge Networks also safeguards Personal Information, Demographic Information and Operating Information from unauthorized access. Most Operating Information is maintained in databases that are separate from those containing Personal Information and Demographic Information. Only authorized Knowledge Networks employees or agents carrying out permitted business functions are allowed to access these databases. In addition, each employee of Knowledge Networks is required to sign a confidentiality agreement requiring him or her to keep confidential all Personal Information of Panel Members. Employees who violate the confidentiality agreement are subject to disciplinary actions, including termination when appropriate.

Access to Your Information and Complaints

A) Accessing, Correcting, Updating and Preventing Use of Your Personal Information or Demographic Information

If you have submitted Personal or Demographic Information to Knowledge Networks through the Knowledge Networks Panel or otherwise, or if someone else has otherwise submitted your Personal or Demographic Information to Knowledge Networks, you can:

1) Access, Correct, Update Your Personal or Demographic Information, by clicking here, emailing your request to: [email protected], or by sending us a letter to the address listed below. Knowledge Networks will use reasonable efforts to supply you with the information you requested to access and to correct any factual inaccuracies in this information.

2) Prevent Further Use of Your Personal or Demographic Information, by emailing your request to: [email protected]. Alternatively, you may call us at 1-800-782-6899 or send us a letter to the address listed below. In each case, we will then use reasonable efforts to prevent further use of your Personal Information or Demographic Information in our files.

B) Complaints

Knowledge Networks is committed to working with consumers to obtain a fair and rapid resolution of any complaints or disputes about privacy. Please send us your questions or comments regarding our privacy practices by emailing us at: [email protected], or send us a letter to:

Privacy Compliance Coordinator

Knowledge Networks, Inc.

Ashley Business Park, Bldg. G

570 South Avenue East

Cranford, NJ 07016

Knowledge Networks will be happy to respond to your questions and comments.

Complaints may also be addressed to CASRO by emailing it at [email protected] , by telephoning it at (631) 928-6954, or by writing to:

CASRO

3 Upper Devon

Port Jefferson, NY 11777

Opting Out

At any time, you may discontinue your participation in the Knowledge Networks Panel by sending us an email ([email protected]) or by calling us at 1-800-782-6899. Parents or legal guardians of any member of the Knowledge Networks Panel who is under the age of eighteen may discontinue the participation of such child in the same manner. Please note that opting-out of the Knowledge Network Panel will not automatically cause us to delete Personal, Demographic, or Operating Information about you (or your child) that we have previously collected. We will do so, however, at your request, as set forth above.

Other Sites

Knowledge Networks is not responsible for the privacy practices or the content of other Websites. We recommend that you carefully read the privacy policies of each site you visit.

Contact Us

You may contact us at:

Knowledge Networks, Inc.

P.O. Box 40

Cranford, NJ 07016
USA

1-800-782-6899

[email protected]

Your Acceptance of Our Privacy Practices

By agreeing to become a Knowledge Networks Panel Member or participating in a Knowledge Networks’ service or program, you signify your acceptance of the terms and conditions of this Privacy Statement. Knowledge Networks may make changes to this Privacy Statement from time to time. We will post changes to our Privacy Statement on the Knowledge Networks Panel Member Web Site, so from time to time please check the Privacy Statement posted there. In addition, we will alert you to significant changes to this Privacy Statement by providing you with written, electronic, or other notice from Knowledge Networks.

Attachment B: KnowledgePanel® Recruitment Advance Letter

«FIRST» «LAST»

«ADDRESS»

«CITY», «STATE» «ZIP»

Dear «FIRST» «LAST»:

Thank you for recently taking part in a Knowledge Networks survey. We appreciate the time you gave to share your opinions. You also told us that you might be interested in doing other surveys in the future. We’re pleased to give you that opportunity.

We would like to invite your household to join KnowledgePanel^®. Each member of your household will be able to give their opinions on a wide variety of topics. Everyone, ages 13 and older, can participate.

Nothing to buy, no fees to pay – lots of rewards including cash payments to you. We believe that when KnowledgePanel Members answer surveys, they should get something in return.

How does it work? Unlike the last survey you did on the telephone, KnowledgePanel surveys are done over the Internet. If you do not have a way to get on the Internet, we will help you. We will send you a small box (called a WebTV) to plug into your telephone line and give you free Internet access through your television. But, if you already have Internet access and email through a computer, you will instead earn a small amount of cash for each survey you take. Plus, there are other valuable rewards for everyone through special raffles and sweepstakes.

We are Knowledge Networks, Inc. This all started as a unique research project almost ten years ago. Today, we are a nationally known opinion research company with KnowledgePanel Members all across America. Our Panel Members generally stay with us for two or more years doing short weekly surveys. They tell us that doing our surveys is interesting, meaningful, and fun! We use the highest industry standards to protect the privacy of our members. Your name, email address, and other personal information will never be given to anyone.

Our representative will call you soon. Take a moment to talk to us. We are very happy to answer your questions. We want you and others in your household to become part of this special project. If you prefer to contact us first, call toll-free «toll free» and mention KnowledgePanel. Kindly accept our invitation and let your voice be heard!

Sincerely yours,

Norman Nie, Ph.D.

Cofounder, Chairman of the Board

For more information go to «url».

Attachment C: Recruitment Module in Recruitment Interview Script: Obtaining Parental/Legal Guardian Consent to Include Teens Age 13 to 17 for KnowledgePanel® Surveys

The below script is part of the KN telephone script that is administered when recruiting a household to be part of KnowledgePanel.

QTG2 With your approval, we would also like to send (youth’s name) weekly surveys by email. Be assured that we also protect the privacy of our teen Panel Members with the same high standards we apply to all our members. Surveys will be brief, entertaining and age-appropriate. Teenage respondents will have the same opportunity to earn cash that you do.

Do you give Knowledge Networks your consent to send surveys to (youth’s name)?

1 YES, TO ALL-QTG3 (CONSENT_x=1 for all members age 13-17)

2 YES, TO SOME-QTG2A

3 NO, I DO NOT GIVE MY CONSENT (CONSENT_x=2 for all members age 13-17)

If QDM2A1=1 and QD3=1 and QDM4A=2 and QDM4A1=2 then R1

Else IADD

QTG2A Do you give Knowledge Networks your consent to send surveys to (youth’s name)?

1 YES, I GIVE MY CONSENT (CONSENT_X=1 for only youth specified)

2 NO, I DO NOT GIVE MY CONSENT (CONSENT_X=2 for only youth specified)

If QDM2A1=1 and QD3=1 and QDM4A=2 and QDM4A1=2 and QTG1A=2 for all youths, then R1

CONTINUE THE LOOP OF QTG2A UNTIL THERE IS NO OTHER ADDITIONAL YOUTH MEMBER. THEN GO TO QTG3 OR QTG4.

QTG3 May we please have (youth’s name)’s email address?

1 YES-QTG3A (GIVE_EMAIL_x=1)

2 NO-QTG4 (GIVE_EMAIL_x=2)

3 YES, BUT DK EMAIL ADDRESS-QTG4 (GIVE_EMAIL_x=3)

QTG3A What is that email address?

** REMINDER: EMAIL ADDRESSES END WITH .COM, .NET, .ORG, .BIZ,, .EDU, .MIL .INFO, .COOP, .US ** (EMAIL_x)

QTG4 Would we be able to send (youth’s name)’s surveys to your email address?

1 YES-TG4A

2 NO-Refusal

TG4A Emails that we send to (youth’s name) will have his/her name in the body of the email

CONTINUE THE LOOP OF QTG3-TG4A UNTIL THERE IS NO OTHER ADDITIONAL CONSENTED YOUTH MEMBER. THEN GO TO IADD.

Attachment D: KnowledgePanel® Survey-Specific Online Consent Form: Obtaining Informed Consent from Parents & Legal Guardians for Conducting Survey with Teens Age 13 to 17

Below is an example of a consent form used by a study that KN conducted that involved highly sensitive items. The process involved collection of consent from parent and legal guardian, and then a second stage of consent that involved asking the teen research subject for consent. Below is the consent form that was administered to the parent/legal guardian.

[FIRST SCREEN]

Dear Knowledge Networks panelist,

Your [INSERT CHILD’S AGE] year-old SON/DAUGHTER is invited to complete a survey being conducted by the [CLIENT NAME].  The survey will be on a variety of topics related to [STUDY SUBJECT CONTENT]. It will take about 15 minutes for HIM/HER to complete. The [STUDY NAME] survey will be quite similar to the kinds of surveys your child has already been involved in as a KnowledgePanel Member. The potential risk to respondents from completing the survey is minimal. Some questions might make him or her feel uncomfortable, but they have the right to skip any questions they don't want to answer. Participation is completely voluntary.

[SECOND SCREEN]

As always, his or her identity will be unknown in all data resulting from the study. The researchers will not have access to any of your child’s identifying information (such as his or her name). All of the conditions and terms described in the "Knowledge Networks, Inc. Privacy & Terms of Use Policy" document that you received when you got your recruitment packet are in effect for this study. If you have questions about your child’s rights as a participant in this study, or are dissatisfied at any time with any aspect of the [STUDY NAME] survey, you may contact Knowledge Networks at (800) 782-6899.

[THIRD SCREEN]

We sent you a copy of the survey that your teenager would be invited to participate in. If you already reviewed the survey or do not wish to review it, please answer the question below now.  If you would like to review the survey, please come back to this survey to answer the question below.  

Do you give your consent to Knowledge Networks for your child to complete this survey?

Yes

No

Attachment E: KnowledgePanel® Survey-Specific Online Consent Form: Obtaining Informed Consent from Teen Research Subjects (Age 13 to 17)

Below is an example of consent form administered parents and legal guardians to gain their permission prior to inviting teens age 13 to 17 to participate in a survey that contained sensitive items.

For many surveys conducted with teens, this consent form or any other consent form has not been needed. The below consent form was used for a study having highly sensitive content.

[FIRST SCREEN]

You are invited to be part of a group of KnowledgePanel® Members in a study being conducted by [CLIENT NAME].  The survey will be on a variety of topics related to [SUBJECT MATTER]. It will take about 15 minutes for you to complete. The [STUDY NAME] will be quite similar to the kinds of surveys you have already been involved in as a KnowledgePanel Member.

[SECOND SCREEN]

The potential risk to respondents from completing the survey is minimal. Some questions are of a sensitive nature. However, you have the right to skip any questions you don't want to answer. There are no additional benefits from completing the survey.

[THIRD SCREEN]

In the [STUDY NAME], participation is completely voluntary. You may withdraw your consent or discontinue participation at any time without penalty. As always, your identity will be unknown in all data resulting from the study. The researchers will not have access to any of your identifying information (such as your name). All of the conditions and terms described in the "Knowledge Networks, Inc. Privacy & Terms of Use Policy" document that you received when you got your recruitment packet are in effect for this study. If you have questions about your rights as a participant in this study, or are dissatisfied at any time with any aspect of the [STUDY NAME], you may contact Knowledge Networks at (800) 782-6899.

[FOURTH SCREEN]

If you have read this form and have decided to agree to be an eligible participant, the [STUDY NAME] will follow.  Would you like to participate in this survey?

Yes

No

1 KnowledgePanel ^® is the national household panel recruited by probability-based methodology; KnowledgePanel includes non-Internet households that KN equips with a laptop device, and it totals approximately 50,000 individual household members over age 13.

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K nowledge Networks Key Company Information, Past External Review, Confidentiality and
Privacy Protections for Panelists: Documentation for Human Subject Review Committees

© 2009