Clinical Trials - Importance

Why might Clinical Trials be important options for Natives to consider?

Wilma ManKiller's, Former Principal Chief (1945-2010), Cherokee Nation of Oklahoma, diagnosed with Kidney and Pancreatic Cancer 

 "Native people need to take charge of their own health care and be a full partner a full participant in their treatment and fully understand what the treatment is fully understand their options are and be a participate in the decision-making.  I think that's the key to survival.”

• Learning about clinical trials is part of taking charge of your health care
• Clinical trials provide high-quality, up-to-date care for today’s cancer patients
• According to Native Survivors Network findings, American Indian / Alaska Native patients are not receiving the best care available
• Taking part in a clinical trial may increase your access to high quality care
• American Indians / Alaska Natives may respond differently to a specific clinical treatment
• The provider may track your side effects more closely on a clinical trial
• The provider may follow up changes in your cancer more closely on a clinical trial
• If American Indians / Alaska Natives are not in the trials, we don’t know if there are some unique problems for Indigenous patients
• For example, in the Breast Cancer Prevention Trial…
  • Over 13,000 women took part in it
  • 34 American Indians started in the study
  • Only 27 finished
  • Scientists do not know why the American Indian women dropped out
  • Did they have similar side effects to the non-Natives?
  • Did they have more or different side effects than the non-Natives?
• These are all important questions that can only be answered if American Indians / Alaska Natives participate in clinical trials.

What is the purpose of this "clinical trials" education?

• To help you make informed decisions about whether or not you want to take part in a clinical trial study
• "Informed decision" means that you understand the possible pros and cons of taking part in a clinical trial. You then make your choice based on what is right for you.
• What information can I find in these "clinical trials" sessions?
• This branch explains what a clinical trial is and identifies the different purposes of clinical trials.
• It will also explain the "phases" of clinical trials and who may take part in them
• How is the information organized in this session?
• It begins with an introduction that describes clinical trials.
• At the end of this introduction is a list of other topics that you are welcomed to choose among.
• You are welcomed to choose among these topics in any order you desire.
• You are also welcomed to look at every one of the sections, if you want to.
• These are the topics; you may look at them in any order:
• Occasionally some questions are included.

Importance of clinical trials

• Natives' issues
• Different types of trials
• Potential benefits and drawbacks
• Possible barriers to taking part
• Eligibility criteria

Types of information the researchers will collect

• The informed consent process
• Information specific to different stages of cancer
• Your answers may help you make an informed decision about taking part in a clinical trial.
• Your answers may also help to personalize the available information for you.

Important points about a "clinical trial"

• Designed to answer a specific scientific question
• Conducted with people
• Designed to find better ways to diagnose, prevent and treat cancer

Why is it important that you have a choice about taking part in a clinical trial study?

• It may increase your ability to get high quality care
• Natives may respond differently to a specific treatment
• You taking part in a study may help others who go through cancer treatment

Clinical Trials: Native people are rarely told about clinical trials in rural areas

The Right to Choose

• This doesn't mean that all trials are "right" for Natives to take part in
• But it does mean that Natives should be provided information about existing trials
• The Native patient can make an informed decision about whether or not to take part in a specific trial.
• Even if you choose to take part in a study, you still need to meet the "eligibility requirements" (next section).