Design and Operation of the 2010 National Survey of Residential Care Facilities. APPENDIX VIII: NSRCF Chain Package

11/01/2011

Exhibit A. NSRCF Pocket Folder

Picture of the NSRCF Pocket Front front
Picture of the NSRCF Pocket Front front

Exhibit B. NCHS Letter to Chains

Department of Health & Human Services
Public Health Service
Centers for Disease Control and Prevention
National Center for Health Statistics
3311 Toledo Road
Hyattsville, Maryland 20782

Dear_____________________:

The Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS) is conducting the National Survey of Residential Care Facilities (NSRCF). This first ever national study of assisted living communities will collect information about the characteristics of these residences and their residents. The NSRCF data will inform researchers, long-term care providers, planners, and policymakers about residential care, which is increasingly becoming an important part of the long-term care continuum in this country. The information that will be requested includes facility characteristics (size, ownership, staffing, services provided, and certification status) and resident characteristics (demographics, diagnoses, functional status, and services used).

This letter is to inform you that some of the communities in your organization may be invited to participate in the NSRCF. This study includes a randomly selected nationwide sample of assisted living facilities, each of which represents a number of similar facilities. Information will be collected primarily by personal interview with directors and staff members. A small sample of residents will be selected, for whom one or more staff members may be designated to answer questions. No resident will be contacted at any time.

Participation is voluntary; however, I want to emphasize that it is important that we obtain data from all sampled communities in order to achieve accurate and complete statistics that will represent all facilities. All information collected will be held in the strictest confidence according to Section 308(d) of the Public Health Service Act (42, U.S. Code, 242m(d) and the Confidential Information Protection and Statistical Efficiency Act (Title 5 of PL 107–347). No resident names or social security numbers will be collected. The information that the staff of your communities provide will be used solely for statistical research and reporting purposes. The collected information will not be published or released in any form if the individual establishment is identifiable unless the individual or establishment has consented to such release.

I invite your communities to participate in this study. We need their help to make this national study a success. If you have any questions, please call an NSRCF representative at 1–800-334–8571 extension 2–6675. I greatly appreciate your cooperation.

Sincerely,

/Edward J. Sondik, Ph.D./
Director, National Center for Health Statistics

 

Exhibit C. NCHS ERB Letter

Department of Health & Human Services
Public Health Service
Centers for Disease Control and Prevention
National Center for Health Statistics
3311 Toledo Road
Hyattsville, Maryland 20782

January 5, 2010

From: Stephen Blumberg, Ph.D.
Chair, NCHS Research ERB

AnjaniChandra, Ph.D.
Vice Chair, NCHS

Research ERB Continuation of Protocol #2008–03 National Survey of Residential Care Facilities

To: Manisha Sengupta, Ph.D.

The NCHS Research ERB reviewed the request for approval of Continuation of Protocol #2008-03 National Survey of Residential Care Facilities on 12/16/09. Continuation of Protocol #2008-03 is approved for the maximum allowable period of one year.

Of Note: The advance letter sent out under Dr. Sondik’s name is considered a part of the approval and should be included in future continuation submissions.

IRB approval of protocol #2008-03 will expire on 01/16/11.

If it is necessary to continue the study beyond the expiration date, a request for continuation approval should be submitted about 6 weeks prior to 01/16/11.

There is no grace period beyond one year from the last approval date. In order to avoid lapses in approval of your research and the possible suspension of subject enrollment, please submit your continuation request at least six (6) weeks before the protocol’s expiration date of 01/16/11. It is your responsibility to submit your research protocol for continuing review.

Any problems of a serious nature should be brought to the immediate attention of the Research ERB, and any proposed changes should be submitted for Research ERB approval before they are implemented.

Please submit ‘‘clean’’ copies of the revised protocol or consents and any other revised forms to this office for the official protocol file.

Please call or e-mail me or VeritaBuie, Dr.P.H., if you have any questions.

/Stephen Blumberg, Ph.D. Chair,/
NCHS Research ERB

/Anjani Chandra, Ph.D./
Vice Chair, NCHS Research

 

Exhibit D. NSRCF Brochure

NOTE: This is a recreation of this brochure. See the PDF version for a scanned version of the actual brochure.

National Survey of Residential Care Facilities
National Health Care Surveys

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
National Center for Health Statistics

Introduction

The National Survey of Residential Care Facilities (NSRCF) is a first time national data collection effort to gather information about the characteristics of residential care facilities, including assisted living residences, board and care homes, congregate care, enriched housing programs, homes for the aged, personal care homes, and shared housing establishments.

Importance

The number of people in the United States who need long-term care is expected to increase to 27 million in 2050. Although assisted living and residential care is an important and growing segment of the long-term care industry, there is an information gap about these communities and their residents. This study will provide for the first time a national picture of assisted living and residential care communities, the characteristics of the people who live in them, and the range of services received by residents. These data will help characterize how residential care and assisted living communities meet the needs of elders and adults with disabilities and help shape future long-term care policies.

Residential care and assisted living

Residential care and assisted living residences are known by different names in different states. To be eligible for this study, a residential care or assisted living residence should:

  • Offer help with personal care such as bathing and dressing, or health-related services such as medication;
  • Provide room and board with at least two meals a day;
  • Provide around-the-clock onsite supervision;
  • Serve an adult population; and
  • Be licensed, registered, listed, certified, or otherwise regulated by a state.

Residences licensed to serve exclusively persons with mental illness, mental retardation, or developmental disabilities are ineligible.

Interview content and process

The NSRCF interviews will be conducted by RTI International. During the interviews, information will be collected on:

  • Facility characteristics, such as physical structure and environment; types of services offered; types of staff employed; and policies on admission, retention, and discharge
  • Resident characteristics, such as demongraphics, involvement in inside and outside activities, use of services, charges for care, health status, and cognitive and physical functioning

Approximately 2,250 facilities--representative of all regulated residential care and assisted living providers with four or more beds in the United States--will be interviewed for the study. Within each residence, a random sample of three to six residents will be selected depending on the number of beds. In-person interviews will be conducted with directors and caregivers, not with residents. Results from this study will be presented separately by bed size (4-10 beds, 11-25 beds, 26-100 beds, and 100 beds or more).

Confidentiality

The Centers for Disease Control and Prevention's (CDC) National Center for Health Statistics (NCHS) is required by law to maintain the confidentiality of data it collects about facilities and persons. All data that you provide will be kept in strict confidence and will be used only for statistical purposes. All information, publications, and data files will be released in such a way that no individual provider, staff, or resident can be identified. Any NCHS staff, contractor, or agent who willfully discloses confidential information may be subject to a jail term or a $250,000 fine.

Intended uses of the data

NSRCF is designed to provide national-level data that can be used by providers, consumers, policymakers, and researchers to:

  • Describe assisted living and other residential care communities and services;
  • Describe functionality of residents; and
  • Examine service level differences by community size and geographical region.

NSRCF partners

NSRCF is an initiative of CDC's NCHS in collaboration with:

  • Office of the Assistant Secretary for Planning and Evaluation (ASPE), U.S. Department of Health and Human Services (HHS)
  • Agency for Healthcare Research and Quality (AHRQ), HHS
  • CDC's National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), HHS
  • CDC's National Center for Immunization and Respiratory Diseases (NCIRD), HHS
  • U.S. Department of Veterans Affairs (VA)

NSRCF supporters

  • American Association of Homes and Services for the Aging (AAHSA)
  • American Seniors Housing Association (ASHA)
  • Assisted Living Federation of America (ALFA)
  • Board and Care Quality Forum
  • National Center for Assisted Living (NCAL)

To learn more about NSRCF call
301-458-4747, or
visit the NSRCF website:
http://www.cdc.gov/nchs/nsrcf.htm

 

Exhibit E. NCHS Confidentiality Brochure

NOTE: This is a recreation of this brochure. See the PDF version for a scanned version of the actual brochure.

How the National Health Care Surveys Keep Your Information Strictly Confidential

National Ambulatory Medical Care Survey
National Hospital Ambulatory Medical Care Survey
Natinal Survey of Ambulatory Surgery
National Hospital Discharge Survey
National Survey of Residential Care Facilities
National Nursing Home Survey
National Home and Hospice Care Survey

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
National Center for Health Statistics

Protecting the public's privacy...no idle pledge

There is safety in numbers, especially our numbers!

The law...

Information collected in the National Health Care Survey (NHCS) is used for research and statistical purposes. No information that could identify a person or establishment can be released to anyone--including the President, Congress, or any court--without the consent of the provider.

The affidavit...

Anyone working for the National Cente for Health Statistics (NCHS) must sign an affidavit--a legal document amking them subject to the Privacy Act, the Public Health Service Act, and other laws.

The penalties...

Disclosures of confidential statistical information are considered a class E felony that is publishable by imprisonment for up to 5 years, a fine of $250,000, or both.

The record...

Since its first survey in 1957, NCHS has maintained an outstanding record in protecting the privacy of individuals and businesses participating in its surveys.

NCHS is well known for the high quality statisical information it provides. Maintaining that level of quality is not possible unless those who provide us with this information can be guaranteed confidentiality.

The confidentiality of records is of primary concern to NCHS. This principle is firmly grounded in federal laws, including the Privacy Act, the Public Health Service Act, the E-Government Act of 2002, and Title 18 of the United States Code. NCHS staff must sign a pledge to obey these laws and associated regualtions to prevent disclosure of information, and they must follow strict procedures concerning data access, physical protection of records, avoidance of disclosure, and maintenance of confidentiality.

Unblemished record for maintaining privacy during data collection and processing

NCHS collaborates with other organizations (for example, the U.S. Census Bureau and private research companies) to collect and process data for NHCS. These groups have an impeccable record of protecting the privacy of survey respondents.

HIPAA Privacy Rule on health information and survey participation

The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule permits you to make disclosures of protected health information without patient authorization for public health purposes and for research that has been approved by an institutional review board (IRB) with a waiver of patient authorization. The NHCS meets both of these criteria. As part of the IRB approval process, reviews were conducted of the surveys' procedures for handling protected health information, and practices were determined to be appropriate for safeguarding respondent confidentiality. Additionally, disclosures may be made under a data-use agreement with NCHS for some surveys that do not collect directly indentifiable data.

Copies of IRB approval letters and other related materials, such as data-use agreements, are available upon request for each component survey of the NHCS. There are several things that you must do to assure compliance with the Privacy Rule when participating in the survey. First, the privacy notice that you generally provide to your patients must indicate that patient information may be disclosed for either research or public health purposes. Second, you may need to keep a record of the disclosure that shows that some data from the patient's medical record were disclosed to CDC for NHCS (we will provide forms to assist you in record keeping). If you do not transmit health information electronically (such as claims data), you are not subject to the Privacy Rule or the requirements described above.

For additional information on the HIPAA Privacy Rule, see:

http://www.hhs.gov/ocr/hipaa

Other safeguards for your privacy

  • Any item that could be used, either directly or indirectly, to identify health care providers or their patients is removed from public-use data files. Names, addresses, dates of birth, dates of service, and location of the health care establishment are never released to the public.

  • NCHS withholds statistical totals if they represent a location so small that the numbers might identify someone.

  • Information security procedures, including use of coded passwords and physical security of computers, prevent unauthorized access to the data.

  • No authority--not even law enforcement officials, the Internal Revenue Service, or the immigration and Naturalization Service--may obtain identifiable information from NCHS without your permission. Your survey responses are also protected from the Freedom of Information Act as well as court subpoenas.

  • All published summaries are presented in such a way that no respondent can be identified.

We believe that our procedures for safeguarding information and our record of protecting the privacy of respondents are reasons why so many providers readily participate and provide reliable, high quality information. As a result ample representative and accurate statistical information on health care utilization is made available every year to the American public, ehalth care providers, the U.S. government, and the research community.

For further information

NCHS data are released in printed reports, CD-ROMs, and on the NCHS website,

http://www.cdc.gov/nchs/

or

For more information about how NCHS protects the information you provide, see:

http://www.cdc.gov/nchs/about/policy/confidentiality.htm

or contact:

Information Dissemination Staff
3311 Toledo Road, Room 5412
Hyattsville, MD 20782

For specific questions about how NCHS protects the information you provide, contact:

Confidentiality Officer
Peter Meyer
3311 Toledo Road, Room 4113
Hyattsville, MD 20782

Telephone: (301) 458-4375
E-mail: prm7@cdc.gov

View full report

Preview
Download

"NSRCFdo.pdf" (pdf, 8.47Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®