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).