Precision Medicine to Population Health Study

Welcome

Our health is affected by factors like our social and physical environments, cultures, behaviors, and genetics. Researchers in Indiana want to better understand how these factors fit together to make up our health and what this can teach us about how to improve the health of all Hoosiers. Right now, researchers only have a few pieces of this puzzle. The goal of the Precision Medicine to Population Health study is to gather together all of the pieces that researchers need to put together the full picture. In order to reach this goal, the study will need the help of 2,000 Hoosiers starting in early 2018. Right now, we are in the pilot phase of the study.

Who Can Help?

The study team is currently testing the study with a select group of 25 participants who have received an email invitation.
If you have not received an email invitation: We’re glad you’re interested in research! Unfortunately, you won’t be able to take part in the pilot phase of the study. Keep an eye on your mailbox in early 2018 to see if you are selected as one of the 2,000 Hoosier households to receive an invitation for the full study. If you’re interested in being a part of another research study, visit our friends at All IN for Health. To keep up-to-date on how our study is going, check back here.
If you have received an email invitation: Thank you for taking the time to think about being in the pilot phase of the study. Please check out our Frequently Asked Questions. If you have any other questions or concerns, call Dr. Bernice Pescosolido at (812)855-6256 or Hank Green at (812)855-6005. You can also read the study Consent Form here. To make an appointment for a study team member to visit you at your home, call the phone number in your email invitation. Making an appointment does not mean that you have to be in the study. The study team member will visit you at your home to explain the study to you and answer your questions. If you agree to participate, the study team member will take you through the study tasks that day in the comfort of your home. If you choose not to participate, that’s okay. It’s your decision.

Frequently Asked Questions

Here are some of our most Frequently Asked Questions about the Precision Medicine to Population Health Study.
  • What is the Precision Health Initiative?

    The Precision Health Initiative (PHI) is an exciting new program with a goal to help researchers learn more about what affects people’s health. Research discoveries may lead to more personalized care and treatments.

  • What is Precision Medicine?

    Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

  • Why is health research important?

    We all want to live long and healthy lives. People who do health research are helping researchers learn better ways to keep us healthy. And they are discovering new medicines and treatments for when we do get sick.

  • How did you get my name?

    You are 1 of 25 subjects selected from the INresearch.org online volunteer registry who will be participating in this research study pilot.

  • What is this study about?
    The goal of the Precision Medicine to Population Health study is to better understand how a person’s social environment, culture, behaviors, genetic traits and physical environments put a person at risk for certain diseases and can impact their ability to recover. You are invited to take part in a pilot of this study. We want to conduct a pretest to help us refine the questionnaire and evaluate and improve the processes and procedures to be used before conducting this study next year to a random sample of 2,000 residents of Indiana.
  • Why should I participate in this study?

    People participate in research for many different reasons.  Two common reasons people take part in a study are to help others and to help advance science. Your participation will help us evaluate our processes and refine the questionnaire and procedures to be used in the study. Your saliva sample and medical record will also help researchers compare how biological information learned from your saliva may be related to health outcomes learned from your health information.

  • What does being in the study involve?
    If you agree to participate, there will be only one 120-minute study visit that will take place in your home at a time convenient to you. This visit will include:
    • Answering a questionnaire (90-minutes) administered by a trained interviewer.

    • Providing a saliva sample by spitting into one plastic tube provided to you.

  • Why do you want saliva samples?
    Researchers in the future will study things in samples like chemicals, biomarkers, and DNA. Chemicals include things like medications or drugs. Biomarkers are signals that something has happened in your body like a hormone change or infection. DNA is your unique genetic information.
  • Who can I call if I have more questions about this study?
    For any questions about the research study, you can contact the researcher, Dr. Bernice Pescosolido, at812-855-6256or Hank Green at812-855-6005.
  • Will I be paid for my time?
    You will receive up to $100 for participating in all parts of the study.  You will receive $75 for completing the questionnaire and $25 for providing a saliva sample.
  • Are my answers confidential?

    We are dedicated to keeping your answers confidential. We cannot 100% guarantee your confidentiality, but all efforts will be made to keep your personal information confidential. All research projects must be approved by an Institutional Review Board. Their job is to protect participant safety, welfare and confidentiality. They have approved this study.

    We will take great care to protect your information. Here are a few of the steps we will take:

    • Information we have about you will be stored on protected computers. We will limit and keep track of who sees the information.
    • We will remove your name and other direct identifiers (like your date of birth) from your information and replace them with a code. There will be a master list linking the codes to names, but we will keep it separate and secure.
    • In order to work with your health information, researchers must promise not to try to find out who you are.
    • We will tell you if someone accesses your data who does not have permission to do so.
    • Your identity will not be included in reports published about the study and databases in which results may be stored.
  • Does the interview have to take place in my home?

    We prefer to conduct the study visit in your home to protect your privacy and confidentiality.  Conducting the study in a public location puts you at risk for others hearing your responses to questions. If necessary, we can try to identify a public location where the interview can be conducted with minimal interruptions and as much privacy as possible.

  • How long does this study last?

    For the Precision Medicine to Population Health pilot we will be interviewing 25 residents of Marion County during the month of November 2017. Each person will only participate for about 2 hours.

  • Will I get the results of the study?
    Yes, you can get the results of the larger study, not the pilot, but it might be several years. After all participants in the study have completed the study requirements, the data will be analyzed and the results published. After the results are published we can share the results with you if you request them.
  • I am having health problems; how can I get help?
    I’m sorry but we can’t offer you any medical advice. We urge you to talk with your healthcare providers for answers to your personal health questions.
  • Who is paying for this study?

    The Precision Medicine to Population Health study is being funded by Indiana University as part of Indiana University’s Grand Challenges Program.

  • How will you protect my information?

    We will take great care to protect your information. Here are a few of the steps we will take:

    • Information we have about you will be stored on protected computers. We will limit and keep track of who sees the information.
    • We will remove your name and other direct identifiers (like your date of birth) from your information and replace them with a code. There will be a master list linking the codes to names, but we will keep it separate and secure.
    • In order to work with your health information, researchers must promise not to try to find out who you are. 
    • We will tell you if someone accesses your data who does not have permission to do so.
    • The Precision Medicine to Population Health Study has Certificates of Confidentiality from the U.S. government. This will help us fight any legal demand (such as a court order) to give out information that could identify you.
  • Will you sell my email address or phone number?

    No, we will never sell your email address or phone number.

  • I don't have a doctor. How can I find one?

    There are many helpful websites that may help you find a health care provider. A few sites that may be helpful are:

    https://www.nlm.nih.gov/services/doctor.html

    https://www.hhs.gov/programs/providers-and-facilities

  • Will my insurance know if I take part in the study?
    We will not let your insurance know if you participate in the study unless you are injured. We do not expect you to be injured. Answering surveys and giving samples are very safe activities. They are unlikely to cause injury. But if you are injured because of your participation and you have insurance, your insurance may be billed to cover any medical care you receive.
  • Will my health information be shared with any insurance companies (health, life, disability, etc.)?

    We take your privacy seriously. We will take great care to protect it. But, if you are injured while taking part in the study and you have insurance, your insurance may be billed.

    If there is a data breach, insurance companies could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

  • How long will you keep my information?

    Unless you withdraw (quit) from the study, there is no limit on how long your health data will be stored and used for research. Your data may be useful in improving health for generations to come.

    You can decide to withdraw at any time by calling us at 812-855-6005. If researchers have already used your information in their studies, we cannot get it back. But we will remove your information and destroy your samples so that they cannot be used for new studies.

  • How do I withdraw from the Precision Medicine to Population Health Study?
    You can decide to withdraw at any time by calling us at 812-855-6005. If researchers have already used your information in their studies, we cannot get it back. But we will remove your information and destroy your samples so that they cannot be used for new studies.
  • Will you test my saliva sample for drugs?

    While the P2P researchers do not plan to test your samples for drugs, it is possible that other researchers in the future may ask to test your samples for medications and drugs. This information will only be used for health research. It will not be used for criminal prosecution.

  • Where and for how long will my samples be stored?
    Your samples will be sent to a secure lab. There is no time limit for how long your samples will be stored.