A Tradition of Healthy Families
Southcentral Foundation research study to examine the amount of nicotine found in saliva of pregnant Alaska Native women and their infants. Nicotine gets into saliva because of tobacco use or exposure. Study involves surveys and saliva samples.

Alaska Area Institutional Review Board
Helps protect individual participant safety and rights in research. All researchers wanting to study Alaska Native people must get permission from this board.

For more information about AAIRB, please call (907) 729-3924

For more information about tribal institutional review boards, visit the Research Ethics and IRB Resources page.

Alaska Native Medical Center
Tribally-owned and operated integrated medical center providing a variety of services to Alaska Native and American Indian people who live in Alaska. Jointly-owned and managed by the Alaska Native Tribal Health Consortium and Southcentral Foundation.

For more information, visit ANMC's Website.

Alaska Native Science Commission
Brings together research and science to help benefit Alaska Native people.

For more information, ANSC's Website.

Alaska Native Tribal Health Consortium
Health corporation owned by Alaska Native health corporations across Alaska. Offers hospital, specialty, environmental and other health services. Inpatient and specialty services are the largest programs. Includes the Office of Alaska Native Health Research which performs health research and helps Alaska Native people get involved in research.

For more information, visit ANTHC's page.

Belmont Report
Talks about the proper way to treat people in research studies. Emphasizes respect, causing no harm and fairness.

For more information, visit the Belmont Guidelines page.

Biological Sample
Small samples of a research participant’s urine, blood, tissue or other sample from the body that are used in health research. Can also be called a specimen.

Capacity-Building
Training or mentoring that increases the research skills of people or a community.

Humboldt Area Foundation Glossary Page
Native Researchers’ Cancer Control Training Program

Centers for Disease Control and Prevention
National program of the U.S. government that protects and promotes the health and safety of all Americans. Has a large facility and program in Alaska that is very active in the Native Community, usually in partnership with Native health organizations.

Cdd Homepage
Genomics and Public Health at CDC

Chart Review
Organized way of gathering information from medical records.

Clinical Research
Helps people understand, find and treat illnesses and other health issues. Involves a wide range of activities from genetics to helping medical staff and patients communicate better. Examples include finding how genetics leads to disease or finding the best ways to council people who have a genetic mutation that predisposes them to a certain disease such as cancer.

For more information, visit the following National Institutes of Health-sponsored websites:

Clinical Trials
NIH Clinical Studies
Genome

Colorectal Screening
Medical procedure done to find polyps or lumps in the intestine or colon before cancer develops. Should be done at age 50 or earlier, depending on family health history.

Colorectal Prevention from the National Cancer Institute.

Community-Based Participatory Research
When all research study steps actively involve people from the community. (Israel, Schultz, Parker, Becker Allen, Guzman, 2003 p54). Community members help plan, create and do the research.

Campus Community Partnerships in Health

Example: People in a community decide on a study topic together with a researcher.

Community Health
Studies health issues from a whole community perspective. Might include how sickness or health is affected by the community people live in. Also includes efforts to improve health involve the community.

Customer-Owner Population
Alaska Native or American Indian people in Alaska are the customers and owners of the Native health system. Southcentral Foundation began using this term when Alaska Native people started to own and manage their health care system. Southcentral Foundation’s customer-owner population lives in the Rural Anchorage Service Unit.

Data Analysis
Understanding and using numbers, or statistics, and other means to show, count and compare data. Usually numbers are used as data. Qualitative Data Analysis(QDA) is used for data like words, thoughts and pictures.

Deoxyribonucleic Acid (DNA)
Common, basic genetic material in humans and all other life forms on the earth. Helps determine characteristics of people like eye and hair color.

Genetics Home Reference
A Brief Guide to Genomics
DNA from the beginning

Diabetes
Lifelong condition that can damage the body. Sugar builds up in blood instead of being used for energy. Diabetes is sometimes caused by genetics, and is also often strongly affected by a person’s diet, obesity and exercise.

National Diabetes Information Clearinghouse
SCF Healthinfo Healthwise Knowledgebase

Enrollment
Describes how participants join a study. Happens after informed consent.

Ethical and Cultural Implications of Specimen Banking Among Alaska Native People
Southcentral Foundation research study to find out what Alaska Native people think about specimen banking. In this project, both interviews and focus groups will be used to gather information.

Family Health History
Record of health issues, illnesses and causes of death among family members. Includes parents, grandparents, great grandparents, aunts, uncles, brothers, sisters and cousins. Often very helpful in planning for healthcare risks and needs in the individual person.

See U.S. Surgeon General’s Family Health Initiative.

Focus Group
Group of people who are asked questions about a certain topic. Usually has eight to 10 people and is led by a moderator. Data is usually taped and transcribed so themes can be identified.

Genes
Basic units of heredity in living cells. Influences many things about a person, such as how you look or how much you weigh.

Genetics Home Reference
Genetic Science Learning Center

Genetics
Study of genes that we have inherited from our ancestors. Genes are passed from parents to children.

Genetics Home Reference
Native American Cancer Research Definitions
Genetics Education Center

Genome
Set of deoxyribonucleic acid (DNA) in people or other life forms.

Genetics Home Reference
A Brief Guide to Genomics
NHGRI Talking Glossary

Genomics
Study of an individual or group’s whole hereditary information that is present in its genes (DNA) and the use of its genes. Most human disorders, except perhaps trauma, are related to genes. Genomics is also the study of the complex interactions among many genes and environmental factors.

Genetics Home Reference
Issues in Genetics and Health
A Brief Guide to Genomics

Involves studying how genes interact with one another and the environment. Public health genomics has been used to: 1) trace epidemics; 2) help develop new vaccines; and 3) monitor drug resistance. The field of genomics includes terms such as gene, heredity and genetics. Complex interactions among multiple genes and environmental factors remain poorly understood.

While ways to conduct genomic research vary, simple tools do exist. The family health history is an easy way to capture information about shared inherited and environmental factors.

Health
How well we are doing in multiple dimensions of being human - physical, emotional, mental and spiritual. Southcentral Foundation’s vision statement: “A Native Community that enjoys physical, mental, emotional and spiritual wellness” reflects this whole person understanding of health.

About the National Institutes of Health
World Health Organization
About Southcentral Foundation

Health Research
Research to gain information and understanding about health. Goal is to find ways to improve human health.

Healthy Children, Healthy Communities
Southcentral Foundation research study of the relationship between levels of alcohol use in pregnant mothers and chemicals in a baby’s first bowel movement. Might help us further understand the effects of alcohol on newborn babies.

Human Genome Project
Project in which the sequence of all genes in humans was mapped and sequenced.
All About The Human Genome Project (HGP)

Human Subjects Protection
Laws protecting research participants. Makes sure that individual rights, freedoms, physical safety and other personal issues are well protected during research activities.

For more information, visit Code of Federal Regulations

Hypothesis
A working theory about how two things or activities might affect each other. Usually an “if” and “then” statement.

Example: “If” people smoke, “then” they are more likely to get cancer.

Indigenous
People who originated from a certain area of land over many, many generations. Also refers to Alaska Native or American Indian people in the United States and other indigenous people in different countries throughout the world.

Informed Consent
Written statement of explanation, understanding and trust between the participant and researcher. It states what the study is about, risks and benefits, who to contact to discuss rights as a participant and states that being in the study is voluntary.

Informed Consent Guide

To view an example consent form, please visit Oregon Health and Science University.

Literature Review
Process of reviewing written and published knowledge on a topic (i.e. from a journal article). Typically does not include information that is verbal, cultural or based on oral tradition.

Maori
The indigenous peoples of Aotearoa, also called New Zealand. A number of Maori Tribes and individuals have longstanding connections to Alaska Native groups and individuals. Have strong self-determination orientation to healthcare service delivery.

New Zealand Minsitry of Health--Maori Health (2006).

Manuscript
Written paper prepared for publication and sent to a scientific journal for review. All manuscripts from within the Native health system must have permission from the appropriate Tribal Authority to be submitted for publication.

See Peer Review.

National Human Genome Research Institute (NHGRI)
A part of the National Institutes of Health, this Institute focuses on developing ways to study genetic influences on health, illness and human disorders. A critical part of NHGRI’s mission continues to be the study of the ethical, legal and social implications (ELSI) of genome research.

Frequently Asked Questions About Clinical Research

National Institutes of Health
Large part of the U.S. Government that conducts and supports medical and health research. The NIH helps to lead the way toward important medical discoveries that improve people’s health and save lives.

National Instutes of Health Webpage

Native American Research Centers for Health
Supports Alaska Native/American Indian people and communities conducting research. Helps build and expand individual and system capability within the Native Community for doing research. Funded by the U.S. Indian Health Service.

Welcome to the Indian Health Service Research Program

Outcomes Research
Studies treatments to see if they can help improve people’s health status. Healthcare providers can use the information to partner with patients and families to make choices about a person’s care.

Outcomes Research Fact Sheet. AHRQ Publication No. 00-P011, March 2000. Agency for Healthcare Research and Quality, Rockville, MD.

Peer Review
Experts review a research paper (“manuscript”) to make sure it is of good scientific quality.

Population
Group of people who have something in common, such as cancer, which is of interest to a researcher. May refer to a group of people who live in the same area or have a trait in common, such as genetics.

Principal Investigator
Leads a research project. Individual is required to have a lot of research experience and/or training.

Multiple Principal Investigators

Privacy Board
Reviews proposed research studies to make sure participant privacy is protected when individual consent is not possible to obtain. Is created to be the voice for this group of people to ensure that appropriate privacy and technical expectations are being met on behalf of the population involved.

Proposal
Written plan for a research study that needs tribal approval before beginning.

Public Health
Discusses and acts on issues that affect the general health of a community. Often involves issues such as water safety, sanitation, immunizations, housing, infectious diseases and illness prevention.

Activities can include:
  • Tracking community health
  • Working on policies that support community-wide health
  • Working to help all people get affordable, quality healthcare


Qualitative Research
Collects data from observation, interviews or verbal communication. Focuses on the meanings and interpretations of participant information rather than only on items that can be counted and evaluated by statistical methods.

Quantitative Research
Scientific investigations in which numbers are used to measure a range of values such as characteristics, concepts or things.

Recruitment
Research staff encourages people to join a research study. Participants are told what the study is about, what is required and benefits and risks are explained.

Research Methods
How a research study is planned and carried out. Should be clear enough to repeat by other researchers.

Research Process
Set of steps to follow in research. Includes the question being asked, how the study is being conducted and how the data will be broken down.

Research, Abstract, Manuscript and Proposal Committee
Reviews, evaluates and approves research abstracts, manuscripts and proposals at the Alaska Native Medical Center based on criteria developed by tribal leadership. Includes two trained health staff from Southcentral Foundation and two trained health staff from the Alaska Native Tribal Health Consortium.

Rural Anchorage Service Unit
Includes over 55 Alaska Native Communities, most of which are in remote, rural locations utilize the Alaska Native Medical Center as their primary medical center. The Village Service Management Team advises Southcentral Foundation about health issues in their area.

ASU PDF

Scientific Article
Research results published in a scientific journal. Information submitted is reviewed by experts before publication.

Semi-Structured Interviews
Most of the interview questions are the same for each person interviewed, but additional questions can be asked of individual participants.

Southcentral Foundation
An Alaska Native owned and operated non-profit health corporation affiliated with Cook Inlet Region, Incorporated. Created in 1982 and focuses mostly on community and primary care services. Jointly owns and manages the Alaska Native Medical Center with the Alaska Native Tribal Health Consortium. Southcentral Foundation also owns and manages over 20 other facilities and programs.

SCF Website

Southcentral Foundation Research Requirements
A clearly defined set of expectations of researchers in behaviors, expertise, quality, language and methodology as defined by the Southcentral Foundation Board of Directors that is applied to all research related requests, projects, manuscripts, publications and presentations.

Specimen Bank
Storage of biological samples for testing or research. The Centers for Disease Control and Prevention in Anchorage manages a Specimen Bank in collaboration with tribal leadership and others.

Structured Interviews
Interviews with research participants that have a specified set of questions. The same questions are asked of each participant in the interview as part of a research project.

Study Group
Group of volunteers who have agreed to participate in a study.

Traditions of the Heart
Southcentral Foundation study of how diet, exercise and lifestyle changes may help prevent heart disease in Alaska Native women. For women ages 40 to 64. Traditions of the Heart is funded by the Centers for Disease Control and Prevention.

CDC - Wise Woman Page

U.S. Surgeon General’s Family History Initiative
Encourages all American families to learn their family health history. A web-based tool is available on-line.

U.S. Surgeon General's Family History Initiative

Voluntary Participation
Means somebody is participating in research voluntarily and, therefore, can withdraw from a study at any time without fear of anything negative happening.

World Health Organization
Part of the United Nations whose goal is to help all people with health-related issues and efforts. They define health as a state of complete physical, mental and social well-being, not just the absence of disease or illness.

World Health Organization