Justification/Mini SSA

Mini Supporting Statement A For

“A Generic Submission for Formative Research, Pre-testing,

Stakeholder Measures and Advocate Forms at NCI“

OMB No. 0925-0641, Expiration Date 9/30/2014

Title of Sub-Project: Research Advocate System

Annie Sampson, Advocate Relations Manager, Office of Advocacy Relations, National Cancer Institute, National Institutes of Health

Section A.

A1. Circumstances Making the Collection of Information Necessary

Special Authorities of the Director – Sec. 413.[285a-2] authorizes the collection of the information. The information request falls under the National Cancer Institute (NCI), Office of the Director, Office of Advocacy Relations (OAR).

In order to carry out NCI’s legislative mandate, the Office of Advocacy Relations disseminates cancer-related information to a variety of stakeholders, seeks their input and feedback, and facilitates collaboration between the stakeholders and NCI to advance programs. OAR is also responsible for matching advocates to NCI programs and initiatives across the cancer continuum. The main purpose of the registration application (Attachment 3) is to gather information from advocates in order to match them appropriately to NCI activities based on their interest and experience. Additionally, the advocates are asked to complete an annual update by email (Attachment 6) to confirm their contact information and interests and preferences.

A2. Purpose and Use of the Information Collection

The purpose of collecting the information is to appropriately match advocates to NCI initiatives and activities and to assist NCI researchers in finding advocates to support their activities. The information collected will be used to match advocates to NCI activities and initiatives where advocate involvement has been requested.

OAR staff will conduct a telephone screening for those who make a request to be added to the database through the website. (Attachment 7) If all criteria is met, they will be asked to complete a registration application. OAR will follow up by telephone to clarify information if needed, and, if requested, will provide NCI staff with information on assigned advocates to justify the advocate(s) involvement in designated activities. The annual update will be used to update the database so that accurate and appropriate matches can occur. This consists of the research advocate receiving a reminder to log back into the website and reviewing and correct the original information used at registration.

A3. Use of Information Technology and Burden Reduction

This will be an online ‘database’ which will contain research advocates’ profiles and contact information. Research advocates will set up profiles in the system that they will be asked to update annually. OAR will send a registration invitation email (Attachment 4) for those requesting to be an advocate and who appropriately meet the criteria. Once the registration is complete an automatic email containing the user name and password as well as notification that they may be contacted if clarification of the information is necessary will be sent. (Attachment 5)

A Privacy Impact Assessment (PIA) has been obtained and was promoted by NIH to HHS on September 28, 2012 (Attachment 1).

A4. Efforts to Identify Duplication and Use of Similar Information

No similar collection of information exists.

A5. Impact on Small Businesses or Other Small Entities

There are no small businesses or other small entities involved in this information collection.

A6. Consequences of Collecting the Information Less Frequently

There are several different forms that advocates are asked to complete: an initial registration application that specifies their interests, an annual update form, and a post-activity survey. The initial application is completed once. The annual update is completed annually. The surveys are completed by both the NCI staff and the advocates once the activity with the advocates is complete. Surveys may be completed multiple times, depending on how many activities the advocate participates in.

A7. Special Circumstances Relating to the Guidelines of 5 CFR 1320.5

This project will be implemented in a manner that fully complies with the Guidelines of 5 CFR 1320.5.

A8. Comments in Response to Federal Register Notice and Efforts to Consult Outside Agency

OAR worked with the NCI Center for Biomedical Informatics and Information Technology (CBIIT) for three years to develop and make the updates to the OAR database. The work was done by contracting companies Advanced Technology Systems, Inc., and Leidos Biomedical Research, Inc. All consults listed below occurred beween 2011 and 2014.

Consulting OAR Staff:

Annie Sampson, Advocacy Relations Manager, NCI OAR, 301.594.3194

Jennifer Kwok, Advocacy Relations Manager, NCI OAR, 301.594.3194

Kelley Landy, Advocacy Relations Manager, NCI OAR, 301.594.3194

Robert Pines, Advocacy Relations Coordinator, NCI OAR, 301.594.3194

Amy Bulman, Acting Director, NCI OD, 301.594.3194

LaTonya Kittles, Consultant, PR Strategists, 443.283.7079

A9. Explanation of Any Payment or Gift to Respondents

No payment or gifts will be given to respondents.

A10. Assurance of Confidentiality Provided to Respondents

Research advocates will create their profiles in the system. In some cases, OAR will enter contact information when a profile is incomplete. This system is a secure online system. Each profile is secure with username and password selected by the user. Personally identifiable information is being collected.

The Privacy Act Officer has determined that this information is covered under the Privacy Act, System of Records Notice (SORN) # 09-25-0106, “Administration: Office of the NIH Director and Institute/Center Correspondence Records, HHS/NIH/OD. This was published in the Federal Register on September 26, 2002.

An OHSRP/IRB review has been done (Attachment 2).

A11. Justification for Sensitive Questions

Personally identifiable information (PII) is collected in the form of the respondent’s name and contact information.

Sensitive questions are asked about the respondents’ cancer experience, which is personal. It is important for the Office of Advocacy Relation to understand their experience as a patient or caregiver to match them to appropriate NCI activities.

A12. Estimates of Hour Burden Including Annualized Hourly Costs

Both advocates and NCI staff will be asked to complete the evaluation survey after the activity; however, because this is part of the NCI staff duties, the burden incurred will not be counted in the table below.

Table A12-1. Estimates of Hour Burden

Type of Respondent	Form	Number of Respondents	Number of Responses Per Respondent	Average Burden Per Response (in hours)	Total Burden Hours
Research Advocate	Registration Application	50	1	30/60	25
	Annual Update	20	1	30/60	10
	Telephone Screener	75	1	15/60	19
Totals					54

Table A12-2. Cost to Respondents

Type of Respondent	Form	Number of Respondents	Total Burden Hours	Wage Rate	Respondent Cost
Research Advocate	Registration Form	50	25	$21.97	$549.25
	Annual Update	20	10	$21.97	$219.70
	Telephone Screener	75	13	$21.97	$285.61
Totals			48		$1,054.56

*The hourly mean wage rates are based on category “Miscellaneous Life, Physical, and Social Science Technicians occupation code 19-4090 (http://www.bls.gov/oes/current/oes_nat.htm#19-0000).

A13. Estimate of Other Total Annual Cost Burden to Respondents or Record Keepers

There are no capital costs, operating costs, or maintenance costs to report.

A14. Annualized Cost to the Federal Government

The largest cost to the federal government is the redesign of the database over the course of three years at an average cost of $95,000 a year with contractors Advanced Technology Systems, Inc. and Leidos Biomedical Research, Inc. NCI personnel costs are from 0.30 FTE total per year for 1 Program Analyst at the GS12/2 level ($78,142), at an average cost of $23,443 a year (based on Locality Pay Area of Washington for Salary 2014, OPM).

Table A.14-1   Annual Cost to the Federal Government

	ANNUAL AVERAGE	Total Cost
Contractor Costs	$95,000	$285,000
NCI Personnel – Program Analyst at GS 12 Step 2	$23,443	$70,329
Grand Total	$118,443	$355,329

A15. Explanation for Program Changes or Adjustments

OAR will ask about advocates’ experience and skills, and give the option to upload a resume.

A16. Plans for Tabulation and Publication and Project Time Schedule

There are no plans for statistical analysis. OAR staff will search the data to match advocates to NCI activities, including looking at their experience in the advocacy and cancer research fields. No results will be published. This project will be ongoing.

The project time schedule is outlined in Table A.16-1.

Table A16-1. Project Time Schedule

Activity	Months after OMB Approval
Post application online (collect information)	0 – 2
Review applications	Begin immediately, ongoing
Follow-up call to verify information	Begin immediately
Determine eligibility and inform applicants of decision	Begin immediately

A17. Reason(s) Display of OMB Expiration Date Is Inappropriate

The OMB Clearance Number, Expiration Date, and Burden Disclosure Statements will be displayed on the applications.

A18. Exceptions to Certification for Paperwork Reduction Act Submissions

There are no exceptions to the Certification for Paperwork Reduction Act Submissions.

List of Attachments:

Attachment 1 – Privacy Impact Assessment

Attachment 2 - OHSRP Exemption

Attachment 3 – Registration Application Screenshots

Attachment 4 - Registration Invitation

Attachment 5 - Auto Reply Email

Attachment 6 - Annual Update Reminder

Attachment 7 – Telephone Screener Script

On behalf of this Federal agency, I certify that the collection of information encompassed by this request complies with 5 CFR 1320.9.

NOTE: The text of 5 CFR 1320.9, and the related provisions of 5 CFR 1320.8(b)(3), appear at the end of the instructions.

The certification is to be made with reference to those regulatory provisions as set forth in the instructions.

The following is a summary of the topics, regarding the proposed collection of information that the certification covers:

(a) It is necessary for the proper performance of agency functions;

(b) It avoids unnecessary duplication;

(c) It reduces burden on small entities;

(d) It uses plain, coherent, and unambiguous terminology that is understandable to respondents;

(e) Its implementation will be consistent and compatible with current reporting and recordkeeping practices;

(f) It indicates the retention periods for recordkeeping requirements;

(g) It informs respondents of the information called for under 5 CFR 1320.8(b)(3):

(I) Why the information is being collected

(ii) Use of information;

(iii) Burden estimate;

(iv) Nature of response (voluntary, required for a benefit, or mandatory);

(v) Nature and extent of confidentiality; and

(vi) Need to display currently valid OMB control number;

(h) It was developed by an office that has planned and allocated resources for the efficient and effective management and use of the information to be collected (see note in Item 19 of the instructions);

(i) It uses effective and efficient statistical survey methodology; and

(j) It makes appropriate use of information technology.

If you are unable to certify compliance with any of these provisions, identify the item below and explain the reason in Item 18 of the Supporting Statement.

Research Advocate System – Page 1