Research Permissions & Privacy Survey

 

The Depression and Bipolar Support Alliance (DBSA) envisions wellness for people living with depression and bipolar disorder. As such, we support research to improve care for people who live with mood disorders, and we encourage individuals to participate in that research.  

But we also understand that mental health information is sensitive.  And one of our core principles is respect for your autonomy, including your right to decide about use of your health information.
 
The purpose of this survey is to understand what you think about using health information in research.  The questions describe different types of research and ask what you think about how researchers should use information and when they need to ask individual permission.

We will share the results of this survey with members of our Scientific Advisory Board and with other mental health researchers.  The results will also be posted to the DBSA Consumer and Family Survey Center at www.DBSAlliance.org/SurveyCenter. DBSA is now involved in several projects to help connect people with opportunities to participate in research. Your opinions will help DBSA to decide about future research partnerships.

This survey consists of 23 multiple choice questions that address privacy related to research in the following four areas.

  • Diagnosing Bipolar Disorder in Children
  • Suicidal Thoughts or Behavior in Young People
  • Follow-up Treatment for Depression and Bipolar Disorder
  • Depression in Pregnancy

Estimated time to complete is 5 minutes. Thank you for your time and input!

 

SECTION ONE: Diagnosing Bipolar Disorder in Children

 

Diagnosis of bipolar disorder in children varies widely from place to place, with some doctors making this diagnosis much more often than others.  This could mean that the true rate of bipolar disorder in children varies, or it could mean that doctors in different places diagnose make this diagnosis in different ways. 

To study this question researchers want to use medical and mental health records from different health care organizations around the United States.  They plan to use computerized records to identify children who were diagnosed with bipolar disorder and then read the notes of doctors (pediatricians, psychologists, and psychiatrists) to compare how different doctors make this diagnosis.  They hope that this research will help us understand if rates of bipolar disorder in children really do vary from place to place and will help doctors use similar methods and rules for diagnosis. 

The first step in this research would use computerized billing or insurance records to study how often doctors in different areas make diagnoses of autism.  This first step would not involve reading doctors’ actual notes or seeing the names of patients or family members.

Please mark how much you agree or disagree with the following statements about this type of research.

*1.
Question - Required - This type of research is useful or important.





*2.
Question - Required - The risk of harm to patients or families from this type of research is minimal.





*3.
Question - Required - Researchers should ask permission from each patient or family before looking at computerized records, even if that means calling or sending letters to thousands of people.





 

The second step in this research would involve reading different doctors’ notes to study how they make diagnoses of bipolar disorder (who they talk to, what questions they ask, whether they make a diagnosis on the first visit). 

Please mark how much you agree or disagree with the following statements about this type of research.

*4.
Question - Required - This type of research is useful or important.





*5.
Question - Required - The risk of harm to patients or families from this type of research is minimal.





*6.
Question - Required - Researchers should ask permission from each patient or family before reading doctors' notes, even if that means calling or sending letters to hundreds of people.





 

As part of this study, researchers would like to contact parents of children to ask standard questions about the children's development and behavior.  The researchers will compare the average or typical answers in places with high rates of bipolar disorder diagnosis to places with low rates.  They hope this research will help us understand if differences in rates of diagnosis are actually true. 

Please mark how much you agree or disagree with the following statements about this type of research.

*7.
Question - Required - This type of research is useful or important.





*8.
Question - Required - The risk of harm to patients or families from this type of research is minimal.





*9.
Question - Required - Researchers should ask permission from a doctor before calling her or his patients. The doctor should decide whether her or his patients can be invited to participate.





 

SECTION TWO: Suicidal Thoughts or Behavior in Young People

 

In 2004, the US Food and Drug Administration issued a warning that antidepressant medications could sometimes cause suicidal thoughts or behavior in young people.  Researchers want to know how this warning affected rates of antidepressant medication use and whether it changed rates of suicide attempt, either higher or lower.  They hope to use computerized records from several large health care systems to study how rates of antidepressant use and rates of suicide attempts changed from 2003 to 2008.  To do this, they would need to count the numbers of people in each year using antidepressant medication and the number who were given a diagnosis of suicide attempt from an emergency room or hospital.  They would not read actual doctors' notes or medical records.

Please mark how much you agree or disagree with the following statements about this type of research.

*10.
Question - Required - This type of research is useful or important.





*11.
Question - Required - The risk of harm to patients or families from this type of research is minimal.





*12.
Question - Required - Researchers should ask permission from each patient (or family) before including her or him in these statistics, even if this means calling or sending letters to a million people or more.





 

SECTION THREE: Follow-up Treatment for Depression or Bipolar Disorder

 

Many people who start treatment for depression or bipolar disorder don’t return for any follow-up visits.  Dropping out might be related to practical barriers like insurance copayments.  Or some doctors and therapists may be better at keeping people engaged in treatment. 

Researchers want to understand how important these different issues are.  They hope to use computerized records from several large health systems to study how continuing or dropping out of treatment is related to differences between patients, differences between doctors or therapists, and differences between clinics or health systems.  They would need to combine computerized information from many thousands of people across different health systems, but they would not need to read actual doctors’ notes or medical records. 

Please mark how much you agree or disagree with the following statements about this type of research.

*13.
Question - Required - This type of research is useful or important.





*14.
Question - Required - The risk of harm to patients from this type of research is minimal.





*15.
Question - Required - Researchers should ask permission from each patient before including her or him in these statistics, even if this means calling or sending letters to a hundred thousand people or more.





 

SECTION FOUR: Depression in Pregnancy

 

Depression is common in pregnancy, but taking antidepressant medications in pregnancy may have some risks for the baby.  It can be difficult for pregnant women to follow through with traditional counseling in a therapist’s office or mental health clinic.  Researchers want to test a brief counseling program for pregnant women that would be provided in OB clinics or over the telephone.  To do this, they would need to use records from OB clinics to identify women who might benefit from the program. 

Please mark how much you agree or disagree with the following statements about this type of research.

*16.
Question - Required - This type of research is useful or important.





*17.
Question - Required - The risk of harm to patients from this type of research is minimal.





*18.
Question - Required - Researchers should ask permission from a doctor before calling her or his patients. A doctor can decide whether her or his patients should be asked to participate.





*19.
Question - Required - Researchers should meet with each patient in person and get permission in writing, even if this means that some women will not be able to participate. Explaining the study and getting permission by telephone is not good enough.





 

As part of this study, researchers will ask standard questions about depression to measure whether the counseling program is helping.  Those standard questions ask about thoughts of suicide and thoughts about harming other people.  Researchers must decide whether they must always keep that information private, or if they sometimes must reveal that a woman is at risk for harming herself. 

Please mark how much you agree or disagree with the following statements about this type of research.

*20.
Question - Required - If a woman participating in the study tells researchers that she has thoughts of harming herself, researchers must keep this information private unless the woman give researchers permission to share it with doctors or family members.





*21.
Question - Required - If researchers believe that a woman participating in the study is at risk for harming herself, they must tell doctors or family members, even if the woman does not want them to.





*22.
Question - Required - If a woman participating in the study tells researchers that she has thoughts of harming her baby, researchers must keep this information private unless the woman give researchers permission to share it with doctors or family members.





*23.
Question - Required - If researchers believe that a woman participating in the study is at risk for harming her baby, they must tell doctors or family members, even if the woman does not want them to.





 

Thank you for your input!

   Please leave this field empty