Module 8- BRIDGE: Patient to Investigator Training Overall Assessment

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1. Choose the best role for the following definition: Provide advice, often limited, to researchers. These individuals have a narrow role—researchers approach them to review a specific part of the research—they do not have a voice at all phases of the research study and they are not a member of the research team. (Required.)

a) Research Advocate

b) Patient/Caregiver Investigator

c) Patient Advisor

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2. Choose the role that matches the following definition: Promote, often to other patients and their families, the need to participate—as “participants” in research. They have often been a research participant and promote others to become research participants as well. They are not involved in developing or actually doing the research studies. (Required.)

a) Research Advocate

b) Patient/Caregiver Investigator

c) Patient Advisor

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3. Choose the role that matches the following definition: They are participating members of research teams that are actively involved throughout all steps of the research process (Required.)

a) Research Advocate

b) Patient/Caregiver Investigator

c) Patient Advisor

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4. As a patient/caregiver investigator, you will participate in all phases of the research study. (Required.)

True

False

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5. What will you NOT do as a patient/caregiver investigator? (choose the one answer that makes the most sense.) (Required.)

a) Join study team calls

b) Be expected to know how to design a research study

c) Review study materials

d) Share your perspective

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6. Which of the following statements is NOT true about patient/caregiver investigators?

a) Soft skills are the traits that make you a good team member, such as etiquette, communication, listening and getting along with other people.

b) Telling your story is a way to convey your point/perspective and can be very helpful to your other research team members.

c) As a participant on a research team, you can remind other study team members to use plain language – avoid jargon (acronyms, technical terms)

d) While participating on the research team, avoid asking questions or offering your opinion.

e) You are teaching them (your other team members) just as much as you are learning from everyone.

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7. Which of the following is NOT an example of “experiential knowledge”:

a) Knowledge/wisdom gained through life experiences

b) Formal training

c) Understanding COPD better than individuals who have not had the disease or who have not cared for someone with the disease.

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8. Which question below is an example of an appropriate question to ask the study team before starting a study?

a) How much of my time will this take?

b) Will I receive payment for my time?

c) Can send me a plain language summary of the study?

d) What do you hope I will contribute to the team?

e) All of the Above

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9. This COPD Foundation Training is focused on which type of research (choose one answer below):

a) Animal—studying how treatments work in animals

b) Molecular—studying disease at the cellular level

c) Human Participants—research that deals with patients, patient information or care given to patients

d) All of the above

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10. Which of the following statements is NOT TRUE for Observational studies? (choose one)

a) Researchers gather information about something that has already happened.

b) Nothing is changed—there is no intervention.

c) Researchers make a change with one group of patients and observe how the change affected the patients.

d) The research team observes, gathers, measures, records and analyzes information and makes a conclusion.

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11. Which of the following statements is NOT TRUE for Experimental studies (choose one)

a) The research team makes a change with one group of patients and then observes how this change affected the patient.

b) The “changed” or intervention group is often compared to a group that is not changed—a group that did not receive the intervention-- -called the usual care or control group.

c) Researchers gather information about something that has already happened.

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12. What best describes the research study step: Qualitative Study? (Choose One)

a) Uses clinical tests, questionnaires or surveys to collect information which is recorded using numbers. Numbers are also used to report the results. This is the most common type of medical research

b) Often uses ideas and opinions collected first to determine what tests to then do for collecting results expressed in numbers.

c) Information collected is often ideas, opinion, beliefs, attitudes and concerns and can be gathered via focus groups or interviews or oral histories. Results are reported in words and summarized into areas of thoughts called domains.

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13. What best describes the research study step: Quantitative Study? (Choose One)

a) Uses clinical tests, questionnaires or surveys to collect information which is recorded using numbers. Numbers are also used to report the results. This is the most common type of medical research

b) Often uses ideas and opinions collected first to determine what tests to then do for collecting results expressed in numbers.

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14. What best describes the research study step: Mixed Results Study? (Choose One)

a) Uses clinical tests, questionnaires or surveys to collect information which is recorded using numbers. Numbers are also used to report the results. This is the most common type of medical research

b) Often uses ideas and opinions collected first to determine what tests to then do for collecting results expressed in numbers.

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15. What best describes the research study step: Identify a Problem? (Choose One)

a) Decide what information is needed, how this information will be gathered and measured, who can and cannot participate, where these participants will be found, how we will invite them and how long the study will last.

b) Submit the research plan to an institutional review board for them to review and decide if the study’s participants will be treated ethically.

c) Determine who can and cannot be in the study and develop “inclusion” and “exclusion” criteria, then use various ways to find and invite individuals to participate.

d) Start with an idea, determine what has been done on the topic previously, focus the topic, develop a specific question to answer.

e) Look for groups interested in the topic, complete requests for proposals from foundations, government agencies, pharma companies or Patient-Centered Outcomes Research Institute.

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16. What best describes the research study step: Secure Funding? (Choose One)

b) Submit the research plan to an institutional review board for them to review and decide if the study’s participants will be treated ethically.

c) Determine who can and cannot be in the study and develop “inclusion” and “exclusion” criteria, then use various ways to find and invite individuals to participate.

d) Start with an idea, determine what has been done on the topic previously, focus the topic, develop a specific question to answer.

e) Look for groups interested in the topic, complete requests for proposals from foundations, government agencies, pharma companies or Patient-Centered Outcomes Research Institute.

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17. What best describes the research study step: Get Permission? (Choose One)

b) Submit the research plan to an institutional review board for them to review and decide if the study’s participants will be treated ethically.

c) Determine who can and cannot be in the study and develop “inclusion” and “exclusion” criteria, then use various ways to find and invite individuals to participate.

d) Start with an idea, determine what has been done on the topic previously, focus the topic, develop a specific question to answer.

e) Look for groups interested in the topic, complete requests for proposals from foundations, government agencies, pharma companies or Patient-Centered Outcomes Research Institute.

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18. What best describes the research study step: Plan a Study? (Choose One)

b) Submit the research plan to an institutional review board for them to review and decide if the study’s participants will be treated ethically.

c) Determine who can and cannot be in the study and develop “inclusion” and “exclusion” criteria, then use various ways to find and invite individuals to participate.

d) Start with an idea, determine what has been done on the topic previously, focus the topic, develop a specific question to answer.

e) Look for groups interested in the topic, complete requests for proposals from foundations, government agencies, pharma companies or Patient-Centered Outcomes Research Institute.

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19. What best describes the research study step: Recruit Participants? (Choose One)

b) Submit the research plan to an institutional review board for them to review and decide if the study’s participants will be treated ethically.

c) Determine who can and cannot be in the study and develop “inclusion” and “exclusion” criteria, then use various ways to find and invite individuals to participate.

d) Start with an idea, determine what has been done on the topic previously, focus the topic, develop a specific question to answer.

e) Look for groups interested in the topic, complete requests for proposals from foundations, government agencies, pharma companies or Patient-Centered Outcomes Research Institute.

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20. What best describes the research study step: Consent Participants? (Choose One)

a) Collect samples or measurements from clinical tests, conduct surveys, interview participants, and review medical records, keeping all information safe and confidential, at all times.

b) Review, summarize and draw conclusions from the data and answer, “Why did we get these results and what did they mean for the people in the study?”

c) Explain to potential study participants, in clear, simple language, the potential benefits and risks of participating in the study, along with sharing with them their patient rights.

d) Publish the study’s results/conclusions in a medical journal, present the results at a conference or share with other patients via a social network.

e) Collect and analyze all information that can be measured and given a numeric value (quantitative) and information based on opinions, preferences and narratives (qualitative).

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21. What best describes the research study step: Collect Information? (Choose One)

a) Collect samples or measurements from clinical tests, conduct surveys, interview participants, and review medical records, keeping all information safe and confidential, at all times.

b) Review, summarize and draw conclusions from the data and answer, “Why did we get these results and what did they mean for the people in the study?”

c) Explain to potential study participants, in clear, simple language, the potential benefits and risks of participating in the study, along with sharing with them their patient rights.

d) Publish the study’s results/conclusions in a medical journal, present the results at a conference or share with other patients via a social network.

e) Collect and analyze all information that can be measured and given a numeric value (quantitative) and information based on opinions, preferences and narratives (qualitative).

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22. What best describes the research study step: Conduct Analysis (Statistical and Non- statistical)? (Choose One)

a) Collect samples or measurements from clinical tests, conduct surveys, interview participants, and review medical records, keeping all information safe and confidential, at all times.

b) Review, summarize and draw conclusions from the data and answer, “Why did we get these results and what did they mean for the people in the study?”

c) Explain to potential study participants, in clear, simple language, the potential benefits and risks of participating in the study, along with sharing with them their patient rights.

d) Publish the study’s results/conclusions in a medical journal, present the results at a conference or share with other patients via a social network.

e) Collect and analyze all information that can be measured and given a numeric value (quantitative) and information based on opinions, preferences and narratives (qualitative).

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23. What best describes the research study step: Evaluate Impact? (Choose One)

a) Collect samples or measurements from clinical tests, conduct surveys, interview participants, and review medical records, keeping all information safe and confidential, at all times.

b) Review, summarize and draw conclusions from the data and answer, “Why did we get these results and what did they mean for the people in the study?”

c) Explain to potential study participants, in clear, simple language, the potential benefits and risks of participating in the study, along with sharing with them their patient rights.

d) Publish the study’s results/conclusions in a medical journal, present the results at a conference or share with other patients via a social network.

e) Collect and analyze all information that can be measured and given a numeric value (quantitative) and information based on opinions, preferences and narratives (qualitative).

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24. What best describes the research study step: Share Results? (Choose One)

a) Collect samples or measurements from clinical tests, conduct surveys, interview participants, and review medical records, keeping all information safe and confidential, at all times.

b) Review, summarize and draw conclusions from the data and answer, “Why did we get these results and what did they mean for the people in the study?”

c) Explain to potential study participants, in clear, simple language, the potential benefits and risks of participating in the study, along with sharing with them their patient rights.

d) Publish the study’s results/conclusions in a medical journal, present the results at a conference or share with other patients via a social network.

e) Collect and analyze all information that can be measured and given a numeric value (quantitative) and information based on opinions, preferences and narratives (qualitative).

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25. Which of the following is NOT an example of how you can contribute, as a patient/caregiver investigator, during a research study?

a) Help develop the research question by sharing issues that frustrate, confuse or worry you in your daily life of living with COPD

b) Voice concerns about what is being asked of patients to do during the study

c) Conduct statistical analysis

d) Write letters of support to funders, highlighting how important the research is to people living with COPD

e) Provide your understanding of why the patients in the study reacted/responded the way they did

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26. “Trajectory of COPD” research is research focused on how and why COPD progresses, over time from moderate to severe

a) True

b) False

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27. Research focused on the different “types” of COPD and the groups of patients who share common characteristics and similar disease progression is:

a) COPD Treatment Issues research

b) Implementation research

c) COPD Phenotypes

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28. Choose the best type of research described here: Research focused on moving results from studies and trials into daily practice

a) Defining COPD

b) COPD Epidemiology

c) Treatment Issues

d) Implementation Research

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29. Choose the best type of research described here: Research focused on COPD oxygen issues, new medications, improved medications and new lung-based devices for treating COPD.

a) Defining COPD

b) COPD Epidemiology

c) Treatment Issues

d) Implementation Research

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30. Choose the best type of research described here: Research focused on the distribution, frequency, patterns, causes and risk factors of COPD.

a) Defining COPD

b) COPD Epidemiology

c) Treatment Issues

d) Implementation Research

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31. Choose the best type of research described here: Research focused on the criteria used to diagnose COPD

a) Defining COPD

b) COPD Epidemiology

c) Treatment Issues

d) Implementation Research

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32. What is a research proposal? (choose all that make sense)

a) Research proposal is a summary of a research project that is written to explain the research idea and how the research is to be done.

b) It can be used to request funding to carry out the research and to get other researchers to participate.

c) Research proposals can be written in response to a request or opportunity from a group that funds research like the National Institutes of Health or Patient-Centered ORI or a Foundation.

d) All of the above

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33. A research proposal and a study protocol are just different words for the same document

True

False

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34. It is ok to ask, “does the research make sense?” and “are there any unneeded risks?” when reviewing a study protocol.

True

False

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35. Please select the answer below that is NOT a role of the institutional review board.

a) Reviews and approves all research before the study begins.

b) Ensures that people joining studies will be protected from unknown harm or risks.

c) Weighs risks versus benefits, looks at what protections are in place and if people in the study are informed about the study before they decide to join.

d) Conducts yearly reviews of all studies.

e) Any unexpected or serious study issues must be reported to the institutional review board.

f) Serves as a place for individuals participating in the study to share their concerns or complaints about the study.

g) Does the study and reports the results.

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36. The informed consent document is a binding contract and once participants begin a study they must continue it until the study is complete

True

False

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37. What best describes Privacy?

a) Applies to the data and involves a person’s identifiable information and the security in place regarding who can see the information

b) Applies to the person, is an understanding that information an individual provides will not be shared with others without permission.

c) None of the above

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38. What best describes Confidentiality?

a) Applies to the data and involves a person’s identifiable information and the security in place regarding who can see the information

b) Applies to the person, is an understanding that information an individual provides will not be shared with others without permission.

Module 8- BRIDGE: Patient to Investigator Training Overall Assessment

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* 3. Choose the role that matches the following definition: They are participating members of research teams that are actively involved throughout all steps of the research process (Required.)

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* 4. As a patient/caregiver investigator, you will participate in all phases of the research study. (Required.)

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* 5. What will you NOT do as a patient/caregiver investigator? (choose the one answer that makes the most sense.) (Required.)

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* 6. Which of the following statements is NOT true about patient/caregiver investigators?

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* 7. Which of the following is NOT an example of “experiential knowledge”:

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* 8. Which question below is an example of an appropriate question to ask the study team before starting a study?

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* 9. This COPD Foundation Training is focused on which type of research (choose one answer below):

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* 10. Which of the following statements is NOT TRUE for Observational studies? (choose one)

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* 11. Which of the following statements is NOT TRUE for Experimental studies (choose one)

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* 12. What best describes the research study step: Qualitative Study? (Choose One)

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* 13. What best describes the research study step: Quantitative Study? (Choose One)

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* 14. What best describes the research study step: Mixed Results Study? (Choose One)

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* 15. What best describes the research study step: Identify a Problem? (Choose One)

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* 16. What best describes the research study step: Secure Funding? (Choose One)

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* 17. What best describes the research study step: Get Permission? (Choose One)

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* 18. What best describes the research study step: Plan a Study? (Choose One)

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* 19. What best describes the research study step: Recruit Participants? (Choose One)

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* 20. What best describes the research study step: Consent Participants? (Choose One)

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* 21. What best describes the research study step: Collect Information? (Choose One)

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* 22. What best describes the research study step: Conduct Analysis (Statistical and Non- statistical)? (Choose One)

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* 23. What best describes the research study step: Evaluate Impact? (Choose One)

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* 24. What best describes the research study step: Share Results? (Choose One)

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* 25. Which of the following is NOT an example of how you can contribute, as a patient/caregiver investigator, during a research study?

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* 26. “Trajectory of COPD” research is research focused on how and why COPD progresses, over time from moderate to severe

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* 27. Research focused on the different “types” of COPD and the groups of patients who share common characteristics and similar disease progression is:

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* 28. Choose the best type of research described here: Research focused on moving results from studies and trials into daily practice

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* 29. Choose the best type of research described here: Research focused on COPD oxygen issues, new medications, improved medications and new lung-based devices for treating COPD.

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* 30. Choose the best type of research described here: Research focused on the distribution, frequency, patterns, causes and risk factors of COPD.

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* 31. Choose the best type of research described here: Research focused on the criteria used to diagnose COPD

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* 32. What is a research proposal? (choose all that make sense)

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* 33. A research proposal and a study protocol are just different words for the same document

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* 34. It is ok to ask, “does the research make sense?” and “are there any unneeded risks?” when reviewing a study protocol.

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* 35. Please select the answer below that is NOT a role of the institutional review board.

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* 36. The informed consent document is a binding contract and once participants begin a study they must continue it until the study is complete

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* 37. What best describes Privacy?

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* 38. What best describes Confidentiality?

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* 39. First Name: (Required.)

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* 40. Last Name: (Required.)

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3. Choose the role that matches the following definition: They are participating members of research teams that are actively involved throughout all steps of the research process (Required.)

4. As a patient/caregiver investigator, you will participate in all phases of the research study. (Required.)

5. What will you NOT do as a patient/caregiver investigator? (choose the one answer that makes the most sense.) (Required.)

6. Which of the following statements is NOT true about patient/caregiver investigators?

7. Which of the following is NOT an example of “experiential knowledge”:

8. Which question below is an example of an appropriate question to ask the study team before starting a study?

9. This COPD Foundation Training is focused on which type of research (choose one answer below):

10. Which of the following statements is NOT TRUE for Observational studies? (choose one)

11. Which of the following statements is NOT TRUE for Experimental studies (choose one)

12. What best describes the research study step: Qualitative Study? (Choose One)

13. What best describes the research study step: Quantitative Study? (Choose One)

14. What best describes the research study step: Mixed Results Study? (Choose One)

15. What best describes the research study step: Identify a Problem? (Choose One)

16. What best describes the research study step: Secure Funding? (Choose One)

17. What best describes the research study step: Get Permission? (Choose One)

18. What best describes the research study step: Plan a Study? (Choose One)

19. What best describes the research study step: Recruit Participants? (Choose One)

20. What best describes the research study step: Consent Participants? (Choose One)

21. What best describes the research study step: Collect Information? (Choose One)

22. What best describes the research study step: Conduct Analysis (Statistical and Non- statistical)? (Choose One)

23. What best describes the research study step: Evaluate Impact? (Choose One)

24. What best describes the research study step: Share Results? (Choose One)

25. Which of the following is NOT an example of how you can contribute, as a patient/caregiver investigator, during a research study?

26. “Trajectory of COPD” research is research focused on how and why COPD progresses, over time from moderate to severe

27. Research focused on the different “types” of COPD and the groups of patients who share common characteristics and similar disease progression is:

28. Choose the best type of research described here: Research focused on moving results from studies and trials into daily practice

29. Choose the best type of research described here: Research focused on COPD oxygen issues, new medications, improved medications and new lung-based devices for treating COPD.

30. Choose the best type of research described here: Research focused on the distribution, frequency, patterns, causes and risk factors of COPD.

31. Choose the best type of research described here: Research focused on the criteria used to diagnose COPD

32. What is a research proposal? (choose all that make sense)

33. A research proposal and a study protocol are just different words for the same document

34. It is ok to ask, “does the research make sense?” and “are there any unneeded risks?” when reviewing a study protocol.

35. Please select the answer below that is NOT a role of the institutional review board.

36. The informed consent document is a binding contract and once participants begin a study they must continue it until the study is complete

37. What best describes Privacy?

38. What best describes Confidentiality?

39. First Name: (Required.)

40. Last Name: (Required.)

41. Email Address: (Required.)