Confidentiality
NIH Certificates of Confidentiality Kiosk. Internet WWW page, at URL: http://grants1.nih.gov/grants/policy/coc/

Description: Place to apply for a Certificate of Confidentiality. “Certificates of Confidentiality may be granted for studies collecting information that if disclosed could have adverse consequences for subjects or damage their financial standing, employability, insurability, or reputation.”

Federal-Wide Assurances
OHRP Assurances. Internet WWW page, at URL: http://www.hhs.gov/ohrp/

Description: This page contains information about seeking federal-wide assurances for research projects. Hospices participating in federally-funded research being coordinated out of another site may need to complete a “federal-wide assurance” if they will not be seeking their own IRB review. A federal-wide assurance indicates that the hospice will abide by the requirements of the IRB that did review and approve the research project.

Funding
NIH Grants and Funding Opportunities. Internet WWW page, at URL: http://grants1.nih.gov/grants/index.cfm

Description: Links to information about funding and training opportunities offered through the National Institutes of Health.

Division of Allergy, Immunology and Transplantation, National Institute of Allergy and Infectious Diseases, National Institutes of Health. (1995). How to Write an NIH Grant Application; How to Revise an Unfundable Grant Application. Internet WWW page, at URL: http://www.meddean.luc.edu/lumen/DeptWebs/microbio/web-walk/nih-grt2.htm

Description: Helpful hints on writing and revising federal grant proposals.

HIPAA
Office for Civil Rights. Medical Privacy - National Standards to Protect the Privacy of Personal Health Information. Internet WWW page, at URL: http://www.hhs.gov/ocr/hipaa/

Description: Detailed information on HIPAA.

Human Subjects Issues
Office for Human Research Protections. (2001). Code of Federal Regulations, Title 45, Public Welfare. Department of Health and Human Services. Part 46 – Protection of Human Subjects. Internet WWW page, at URL: http://www.hhs.gov/ohrp/

Description: Federal regulations regarding human subjects issues

Office for Human Research Protections. Informed Consent Checklist – Basic and Additional Elements. Internet WWW page, at URL: http://www.hhs.gov/ohrp/

Description: Checklist to ensure informed consent

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report:
Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Internet WWW page, at URL:  http://www.hhs.gov/ohrp/

Description: “The Belmont Report attempts to summarize the basic ethical principles identified by the Commission in the course of its deliberations…. It is a statement of basic ethical principles and guidelines that should assist in resolving the ethical problems that surround the conduct of research with human subjects.”

Institutional Review Boards
Office for Human Research Protections, U.S. Department of Health and Human Services. (1993). Protecting Human Research Subjects: Institutional Review Board Guidebook. Internet WWW page, at URL: http://www.hhs.gov/ohrp/

Description: “The Guidebook does not itself constitute regulations but rather has been prepared for the convenience and reference of IRB members and administrators.”

University of South Florida, Division of Research Compliance. Internet WWW page, at URL: http://www.research.usf.edu/cs/

Description: Links to sample IRB forms for the University of South Florida. Forms vary from IRB to IRB, but this will give you a sense of what information is gathered as part of the typical IRB application process.

Quality Improvement or Research?
Casarett, D; Karlawish, JHT; Sugarman, J. (2000). Determining when quality improvement initiatives should be considered research. Journal of the American Medical Association, 283(17):2275-2280.

Description: Article suggesting how to determine what is “research”

Research Design
Trochim, William M.(2000). The Research Methods Knowledge Base, 2nd Edition. Internet WWW page, at URL: http://www.socialresearchmethods.net/kb/

Description:  “The Research Methods Knowledge Base is a comprehensive web-based textbook that addresses all of the topics in a typical introductory undergraduate or graduate course in social research methods…. It uses an informal, conversational style to engage both the newcomer and the more experienced student of research.”

Research Ethics
National Academy of Sciences, National Academy of Engineering, Institute of Medicine. (1995). On Being A Scientist: Responsible Conduct In Research. Internet WWW page, at URL: http://www.nap.edu/readingroom/books/obas/

Description: “Though "On Being a Scientist" is aimed primarily at graduate students and beginning researchers, its lessons apply to all scientists at all stages of their scientific careers.”

Acknowledgments
The Hospice Research manual represents a collaborative effort of the National Hospice and Palliative Care Organization, the National Council of Hospice and Palliative Professionals, researchers and hospice professionals. The value of the input the authors received cannot be overstated. The following people provided input, feedback and revision to the Hospice Research Manual during its development:

• Barbara Bouton, MA
• Linda Cain, PhD, RN
• Inge Corless, PhD
• Stephen Connor, PhD
• Jeanette Forbis, MSN, RN, APN
• Gary Gardia, MEd
• Pat Gibbons, RN, BSN
• Phyllis Grauer, BS, PharmD
• Frances Hoffman, MAT, MHA
• Anne King, R.N.
• Jean Kutner, MD
• Jill Lampley, MBA
• Susan McMillan, PhD
• Shareefa Sabur, MNO
• Lynn Zuellig, RN BSN