Supporting Statement Part A 2019-03-11

Supporting Statement A for Pilot Test of the Protocol for Eliciting Patient Narratives from Parents for the Child Hospital Consumer Assessment of Healthcare Providers and Systems - 0935-0124

RAND Project Leaders
Ron D. Hays

Marc Elliot

RAND Corporation
1776 Main St.
P.O. Box 2138
Santa Monica, CA 90407-2138

Contract Number: U18HS025920

Prepared for AHRQ
Caren Ginsberg, Project Officer

TABLE OF ContentS

SUPPORTING STATEMENT:

Pilot Test of the Protocol for Eliciting Patient Narratives from Parents for the Child Hospital Consumer Assessment of Healthcare Providers and Systems 1

Introduction 1

A. Justification 1

A1. Necessity of Information Collection 1

A2. Purpose and Use of Information 3

A3. Use of Information Technology 3

A4. Identifying Duplication 4

A5. Impact on Small Businesses 4

A6. Consequences of Less Frequent Data Collection 4

A7. Special Circumstances 4

A8. CMS Federal Register Notice 4

A9. Respondent Payments or Gifts 4

A10. Assurance of Confidentiality 5

A11. Sensitive Questions 13

A12. Burden of Information Collection 13

A13. Capital Costs 14

A14. Cost to the Federal Government 14

A15. Program Changes or Adjustments to Annual Burden 15

A16. Time Schedule, Tabulation and Publication of Results 15

A17. Display of OMB Expiration Date 16

List of Attachments: 16

References 17

SUPPORTING STATEMENT:

Pilot Test of the Protocol for Eliciting Patient Narratives from Parents for the Child Hospital Consumer Assessment of Healthcare Providers and Systems

Introduction

The Agency for Healthcare Research and Quality (AHRQ) requests clearance from the Office of Management and Budget (OMB) under the Paperwork Reduction Act of 1995 to implement the survey entitled “Field Test of Low Literacy Version of CAHPS Clinician & Group Survey.”

Producing evidence to make health care safer, higher quality, more accessible, equitable, and affordable is part of AHRQ’s mission. As a program sponsored by AHRQ, the Consumer Assessment of Healthcare Providers and Systems (CAHPS^) is purposed with advancing the scientific understanding of the patient experience of care, including the development and testing of new surveys and/or approaches to data collection to promote or improve the collection of consumer reports and evaluations of their experiences with health care.

The proposed pilot test of a Narrative Elicitation Protocol (NEP) for the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS^) survey fulfills AHRQ’s mission to develop innovative new ways to promote quality and safety. The pilot study will test a version of the NEP previously developed for the CAHPS Clinician & Group Survey, adapted to be appropriate for parents of children with recent hospital stays. Past research on the CG-CAHPS NEP documents that patient narratives convey information about a number of domains currently outside the scope of close-ended CAHPS questions; past research on on-line patient narratives from inpatient settings suggests that an NEP in that setting will equally expand capacity to assess quality and safety from patients’ perspective.

The pilot test furthers the purpose of CAHPS by conducting a scientifically designed test to determine how well the seven-question NEP captures the breadth of patient experience, by comparing them to information obtained in “gold standard” intensive interviews with a randomly selected sub-sample of 50 members of the sample.

A. Justification

A1. Necessity of Information Collection

Standardized surveys and administration procedures recommendations are central components of CAHPS. The CAHPS survey items represent what consumers value and for which they are the best source of information. The CAHPS suite of surveys is extensive and includes items to evaluate ambulatory care (e.g., accountable care organizations--ACOs, health plans, clinicians/groups, patient-centered medical homes--PCMHs, American Indian, dental), and institutional care (hospital, nursing home, assisted living, hemodialysis, surgical). CAHPS survey data are used as a component of provider quality payments, including pay-for-reporting by ACOs under the Medicare Shared Savings Program, hospital value-based purchasing payments, quality bonus payments for Medicare Advantage Plans, and dialysis center value-based purchasing payments.

Performance reports on doctors have become increasingly available in recent years, but there is little evidence regarding how consumers understand and use different types of performance information to make choices. The few research studies that do exist on this topic suggest that most consumers pay little attention to standardized quality measures such as CAHPS, clinical process indicators, or patient safety metrics. There is growing evidence, however, that consumers are interested in comments posted by patients online regarding their experiences with their doctors; the number and use of websites with such patient comments has increased rapidly in recent years. Comments from patients often cover the same experiential domains as CAHPS surveys, but in ways that can be easier to understand, more engaging, and more persuasive to those reading a report than statistically summarized survey scores.

This pilot study builds on AHRQ’s previous research in which a Narrative Elicitation Protocol (NEP) for the CAHPS Clinician & Group Survey was designed. Because the existing NEP was designed specifically for administration to consumers receiving outpatient care, it is not appropriate for use with parents of children receiving care or for hospital-based care. The current pilot study tests a revised version of the existing NEP, one that is specifically designed to accompany the Child HCAHPS survey. Developing an NEP applicable to complex inpatient settings should also be useful for extending to non-pediatric populations in future work.

This research has the following goal:

1. Develop, test, and modify as necessary a new narrative elicitation protocol (NEP) suitable for use with parents of children who have had an overnight hospital stay.

To achieve this goal the following activities will be implemented:

1. Child HCAHPS survey and Child HCAHPS NEP: A total of 50 respondents will complete the standard Child HCAHPS survey and a newly developed Child HCAHPS NEP.

2. Intensive interviews: An additional 50 respondents will participate in an hour-long interview, two to three weeks after completing the Child HCAHPS survey and Child HCAHPS NEP. The intensive interview is designed to act as the “gold standard” for capturing their experiences in narrative form.

Study participants will be recruited from the Ipsos (formerly GfK and Knowledge Networks) panel of online consumers. Attachment A presents the study invitation that will be used for recruitment. Attachment B presents the Child HCAHPS survey, Attachment C presents the NEP for Child HCAHPS, and Attachment D presents the intensive interview protocol. Attachment E presents the informed consent language all respondents will receive.

This study is being conducted by AHRQ through its contractors, the RAND Corporation and Yale University, pursuant to AHRQ’s statutory authority to conduct and support research on healthcare and on systems for the delivery of such care, including activities with respect to the quality, effectiveness, efficiency, appropriateness and value of healthcare services and with respect to quality measurement and improvement. 42 U.S.C. 299a(a)(1) and (2).

A2. Purpose and Use of Information

This data collection effort is a one-time pilot test to be completed in 2019-2020. The pilot test will evaluate a newly-developed Narrative Elicitation Protocol (NEP) for Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS), a survey fielded to parents of children with recent hospital stays. The pilot test will randomize consumers to receive the NEP via phone or internet mode of administration, for the following purposes:

1. Assess overall response rate. AHRQ will assess and compare the overall response rate to the NEP, as well as each of the NEP questions, to determine if the response rates are comparable to those obtained for the NEP for the CAHPS Clinician & Group Survey.

2. Compare the sentiment and content of the NEP-elicited responses to ones obtained via the intensive interviews. AHRQ will assess and compare the frequency and distribution of positive and negative comments, across a range of themes, generated through qualitative coding of the NEP and interview data.

3. Compare NEP responses across fielding types. AHRQ will compare NEP responses by survey mode (phone vs. internet).

The result of these analyses will inform revision to and further use of NEP for Child HCAHPS and whether the NEP for Child HCAHPS should be included in the suite of CAHPS surveys.

A3. Use of Information Technology

Participants in the internet-mode condition will complete the experiment through a secure online connection from their homes. Survey data are collected by a web-based survey system (internally referred to as “Dimensions”). This application runs on top of a secured Windows environment that has been hardened through various network and host-based security techniques. Participants take online surveys by using a web-browser to access a unique, secured web URL that is both emailed to them and made available through a secured web-portal. The URL provides access to click through to a highly-available load-balanced farm of web servers that hosts the online survey. This survey URL can be exposed via either standard http or over SSL and TLS encrypted https, depending on the client requirements. Throughout the interview process, questionnaire data are copied to a secured, centralized database for data processing.

Participants in the phone-mode condition will complete the experiment by phone.

A4. Identifying Duplication

No NEP instrument comparable to the one tested here is currently in use, and the proposed data collection is designed to test performance of the Child HCAHPS NEP against data collected via intensive interviews. The proposed information collection does not duplicate any other effort and the information cannot be obtained from any other source.

A5. Impact on Small Businesses

Survey and interview respondents are consumers of health care services offered by hospitals, and the pilot test will employ a standard CAHPS phone/internet survey protocol which is designed to minimize burden on survey respondents. Small businesses or other small entities will be not significantly impacted by the field test.

A6. Consequences of Less Frequent Data Collection

This is a one-time data pilot test.

A7. Special Circumstances

There are no special circumstances associated with this information collection request.

A8. CMS Federal Register Notice

This proposed information collection is being submitted under AHRQ’s generic clearance (OMB No. 0935-0124). Therefore, publication in the Federal Register is not required.

A9. Respondent Payments or Gifts

People who have a child under 18 who had an overnight hospital stay in the past year are a hard-to-recruit population. To effectively recruit respondents from this population, AHRQ proposes a base $25 cash remuneration.  AHRQ also proposes an additional $50 cash renumeration for those also participating in the 1-hour interview.  It is not intended to be a payment for their time. This renumeration will be provided by Ipsos to draw potential participants’ attention to the study, to gain their cooperation, and as a thank you for participating. A past study with patients about their experiences with healthcare showed a greater response rate (57% vs. 50%) for those respondents offered incentives versus those who were not offered incentives, and similar but higher completion rates among those responding (99% vs. 97%; Brown et al., 2016). A second study showed increases in both initial survey response rates (54% vs. 45%) and follow-up response rates (69% vs. 64%; Beebe et al., 2005). The proposed incentive amounts will offset potential increased recruitment costs to the project by offering an incentive to participate that is in line with the amount of effort required to do so, thereby limiting the probability of survey non-response and last-minute interview cancellations. 

A10. Assurance of Confidentiality

Individuals and organizations will be assured of the confidentiality of their replies under Section 934(c) of the Public Health Service Act, 42 USC 299c-3(c). They will be told the purposes for which the information is collected and that, in accordance with this statute, any identifiable information about them will not be used or disclosed for any other purpose. AHRQ will explicitly collect informed consent from all respondents, as detailed in Attachment E.

The data files Ipsos provides to the research team at Yale and RAND will contain an identification number (ID) for each study participant, but the research team will never be in possession of the linking file. The study IDs will be numbers without inherent meaning or ability link to an individual (e.g., they will NOT be a social security, date of birth). The privacy provisions and data security protocols for Ipsos’s respondent panel, called KnowledgePanel (KP), are detailed below. All analytic files and output will be de-identified. All data files will be password-protected.

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Ipsos 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 KnowledgePanel 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 Members' 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.

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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 Ipsos through KnowledgePanel or otherwise, or if someone else has otherwise submitted your Personal or Demographic Information to Ipsos, you can:

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

• 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.

• We will retain your information for as long as your account is active or as needed to provide you services. If you wish to cancel your account or request that we no longer use your information to provide you services contact us at [email protected] . We will retain and use your information as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements.

B) Complaints

Ipsos 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 or requests to revoke consent to be contacted by an automatic telephone dialing system or interactive voice technology on your mobile phone by emailing us at: [email protected], or send us a letter to:

Privacy Compliance Coordinator
Ipsos Custom Research
120 Eagle Rock Avenue, Suite 200
East Hanover, NJ 07936

A11. Sensitive Questions

The survey does not include any questions of a sensitive nature.

A12. Burden of Information Collection

Table 1 shows the estimated annualized burden and cost for survey respondents' time to participate in this data collection.

All participants will complete the Child HCAHPS survey, which is estimated to take .17 hours (10 minutes), followed by the seven NEP open-ended questions, which are estimated to take an additional .08 hours (5 minutes; Grob et al., 2016), for a total of .25 hours (15 minutes). These estimates are based on prior experience with the Child HCAHPS survey and NEP for the CAHPS Clinician & Group Survey (Schlesinger et al., 2018).

The intensive interviews, completed by a subsample of survey respondents, are estimated to take 1 hour (60 minutes), and will be conducted two to three weeks after the survey and narrative elicitation (for a total of 1.25 hours). This estimate is based on AHRQ’s prior study and design of the NEP for the CAHPS Clinician & Group Survey (Schlesinger et al., 2018).

The May 2017 National Employment and Wage Estimates reported by the Bureau of Labor statistics indicate an average hourly wage of $24.34 across the 50 U.S. states and the District of Columbia. The national average has been used to estimate the wages of survey respondents. The Knowledge Panel consists of a broad cross-section of the U.S. adult population, and thus a national average should be a reasonable estimate of the wages of survey respondents.

Table 1. Estimated annualized burden hours

Collection Task	Number of Respondents	Number of Responses per Respondent	Hours per Response	Total Burden hours
Child HCAHPS Survey and NEP only	50	1	.25	12.5
Child HCAHPS Survey and NEP, plus Intensive Interview	50	1	1.25	62.5
Totals	100	1	NA	75

Table 2. Estimated annualized cost burden

Collection Task	Number of Respondents	Total Burden hours	Average Hourly Wage Rate*	Total Cost Burden
Child HCAHPS Survey and NEP only	50	12.5	$24.34	$304.25
Child HCAHPS Survey and NEP, plus Intensive Interview	50	62.5	$24.34	$1,521.25
Totals	100	75	NA	$1,825.50

*Based upon mean hourly wage, “May 2017 National Occupational Employment and Wage Estimates United States,” U.S. Department of Labor, Bureau of Labor Statistics, retrieved at https://www.bls.gov/oes/current/oes_nat.htm.

As indicated in Table 1 above the annual burden hours are estimated to be 75 hours in total for 100 consumers responding to either the Child HCAHPS Survey and NEP only or the Child HCAHPS Survey and NEP, plus Intensive Interview.

A13. Capital Costs

Capital and maintenance costs include the purchase of equipment, computers or computer software or services, or storage facilities for records, as a result of complying with this data collection. There are no direct costs to respondents, other than their time to participate in the study.

A14. Cost to the Federal Government

Table 3a provides annualized estimates of cost to the Federal Government. Table 3b provides estimates of Federal government personnel cost.

Table 3a.  Estimated Total and Annualized Cost

Cost Component	Total Cost	Annualized Cost
Project Development	$35,000	$17,500
Data Collection Activities	$83,140	$41,570
Data Processing and Analysis	$140,790	$70,395
Publication of Results	$27,440	$13,720
Project Management	$5,000	$2,500
Total	$291,370	$145,685

Table 3b. Government Personnel Cost

Tasks/Personnel	Annual Salary	% of Time	Cost
PRE OMB Approval Costs
Government Personnel Costs
Social Science Analyst – GS15*, Step 9	$164,200	1%	$1,642
POST OMB Approval Costs
Government Personnel Costs
Social Science Analyst – GS15*, Step 9	$164,200	2%	$3,284
Grand Total			$4,926

*Based on 2019 OPM Pay Schedule for Washington/DC area: https://www.opm.gov/policy-data-oversight/pay-leave/salaries-wages/2019/general-schedule/

A15. Program Changes or Adjustments to Annual Burden

This is a new information collection request.

A16. Time Schedule, Tabulation and Publication of Results

AHRQ will not generate or publish population estimates from this field test. AHRQ will publish methodological findings to further the purpose of CAHPS to advance the scientific understanding of the patient experience. The methodological findings will be generated from the analysis of the data collected using the NEP in comparison to the intensive interviews, using the Child HCAHPS survey responses as important context for the comparison. AHRQ will test for the prevalence and distribution of valence (positive versus negative comments) and themes contained in the comments, identified through qualitative coding techniques, as well as overall response rate. AHRQ will test the significance of differences in valence and themes by survey mode (phone vs. internet) using between group t-tests and chi-square tests, as appropriate.

For planning purposes, AHRQ anticipates data collection will begin as early as June 2019 and no later than October 2019. Table 2 provides an approximate timeline for survey and interview tasks including tabulation of data following review and approval of this field test.

Table 2: Time Schedule of Survey Tasks

Activity	Proposed Timing of Activity
Initial testing (10 participants)	Month 1
Internet and phone surveys (90 participants)	Months 2 to 3
Intensive interviews (50 participants)	Months 3 to 4
Data transcription	Month 5
Develop coding scheme and code data	Months 6 to 15
Data analysis	Months 16 to 18
Revising NEP	Months 19 to 20

A17. Display of OMB Expiration Date

The expiration date for OMB approval of this information collection will be displayed on the survey.

List of Attachments:

Attachment A Child HCAHPS NEP Invitation 2019-03-11.docx

Attachment B Child HCAHPS Survey 2019-03-11.docx

Attachment C Child HCAHPS Narrative Elicitation Protocol 2019-03-11.docx

Attachment D Intensive interview protocol 2019-03-11.docx

Attachment E Informed consent 2019-03-11.docx

References

Beebe, T. J., Davern, M. E., McAlpine, D. D., Call, K. T., & Rockwood, T. H. (2005). Increasing response rates in a survey of Medicaid enrollees: the effect of a prepaid monetary incentive and mixed modes (mail and telephone). Medical Care, 43(4), 411-414.

Brown, J.A., Serrato, C.A., Hugh, M., Kanter, M.H., Spritzer, K.L., & Hays, R.D. (2016). Effect of a post-paid incentive on response to a web-based survey. Survey Practice, 9, 1-7.

Grob, R., Schlesinger, M., Parker, A.M., Shaller, D., Wright, L., Martino, S., Finucane, M., Rybowski, L., & Cerully, J. (2016). Breaking narrative ground: Innovative methods for rigorously eliciting and assessing patient narratives. Health Services Research, 51, 1475-6773.

Schlesinger, M., Grob, R., Shaller, D., Martino, S.C., Parker, A.M., Rybowski, L., Finucane, M.L., & Cerully, J.L. (2018). A rigorous approach to large-scale elicitation and analysis of patient narratives. Medical Care Research and Review, online first: https://doi.org/10.1177%2F1077558718803859.