Bringing the voice of the people to the Precision Health Initiative
While most of the Precision Health Initiative looks to the role our genes play in health, the Person to Person Health Interview Study recognizes that the impact of genetics on our health differs based on what people experience in their daily lives, where they live, and what they believe. Our study will generate a unique data set that links genetics and biology with the social and physical environment to allow researchers to connect the dots in ways that they have not been able to do before. This project aims to understand and improve the physical and mental health of Indiana residents.
Each randomly selected household will receive an invitation by mail. Our field interviewers then follow up these invitations by visiting the home to personally invite one adult member of the household to participate in the study. This person will be randomly chosen to ensure that age and gender are representative of the Indiana population.
Determine the prevalence of key health issues across the state, including obesity, hypertension, heart disease, substance use disorders, mental health problems, diabetes, cancer, and more.
Learn about key health concerns and barriers to care for Indiana residents -- in their words and voices -- to help address the public health needs of Indiana.
Connect genetic risk factors and social conditions to disease outcomes.
Understand the public’s openness to precision health therapies (e.g., gene therapies, stem cell therapies), including fears and ethical concerns that may act as barriers to these therapies.
Study the association of possible exposure to environmental toxins at home or at work with an array of possible disease outcomes.
Investigate the extent of electronic health record coverage across the state with an eye toward improving enrollment and integration across healthcare systems.
How to participate
Your household has been randomly selected to participate in a groundbreaking study conducted by Indiana University called the Person to Person Health Interview Study. This study is part of Indiana University’s Precision Health Grand Challenge.
We want to learn what you believe are the key health challenges facing communities like yours (for example, cancer, diabetes, addiction, mental health), what keeps people from getting the health care they need (for example, cost, transportation, finding the right doctor), and how the state and the medical system can work to make our communities stronger, healthier, and safer.
Maybe you have a family member or friend who has battled a serious disease or chronic condition? Perhaps you want to make sure that your children and grandchildren have the best available treatments to lead healthy, happy lives? Or maybe you want to be a champion for your community and its needs? Whatever the reason, it is important to be a part of our study. Residents we have interviewed in your area have found the interview easy to complete, interesting and enjoyable, and you will receive a cash incentive at the time of the interview as a thank you for your time.
We may have already stopped by your home to invite you to participate. If not, we will be stopping by soon! We hope you will agree to talk with one of our professional field interviewers for just a few minutes when they stop by to see who among the adults in your household is eligible to participate. We can then schedule a separate time to conduct the actual interview.
If you have a preferred time or place for our interviewer to stop by or if you have any questions about participating, please contact our study director Karen Tucker at 844-875-0057. If no one answers, please leave your name, complete address and a phone number and we will return your call promptly. The interview can be completed in the privacy of your own home or at another mutually agreeable location.
We hope you will consider participating and will let your voice be heard.
One of our field interviewers has come to your home to personally invite you to participate in our Person to Person Health Interview Study. The door hanger contains information that you can use to contact the interviewer directly to schedule a time for them to return to your home, describe the study to you, and invite a member of your household to participate. The door hanger also tells you how you can learn more about the study on the internet.
We hope you’ll reach out to your field interviewer and choose to let your voice be heard!
Our field interviewers will arrive in your neighborhood in vehicles marked with the Indiana University Trident.
They will have their IU credentials clearly visible to you as well as an endorsement letter from Indiana University and will be happy to answer any questions or put you in touch with their field manager for you to verify their identities. They will probably also have a pretty hefty backpack or duffel bag with them to carry all the papers and equipment they will need to conduct the survey should you choose to do so!
If you are still uncertain, feel free to contact local law enforcement. For your peace of mind and safety as well as ours, we notify them that we will be in the area collecting data.
If you take part in the study, you will be asked to do the following:
Give Health Information – The questions will be asked by a professionally-trained interviewer using a tablet computer in the privacy of your home or in an alternative setting that you can suggest. The questionnaire will take approximately 60-90 minutes and includes questions about your health, behaviors, and relationships with people in your life, illnesses and attitudes. In addition, you will give researchers the ability to see your medical record. You also have the option to respond to an extra 15-minute questionnaire that asks your opinions about drug abuse and addictions, and your social networks.
Allow audio recording of your responses to a few questions asking about your health conditions and personal health challenges, accessing health care for you and your family, and what the state of Indiana could do to make a difference in health care.
Give body measurements – You will allow a trained interviewer to measure your height, weight, waist/hip/neck circumference, oxygen level, pulse and blood pressure.
Give a saliva sample – Saliva will be collected in one plastic tube provided to you.
Two to four weeks after the study visit, you may be randomly selected and emailed a link to a 5-minute validation/verification web survey for quality control purposes.
Where we are collecting data
This map shows the counties where we are collecting data. The study team started in the central region of the state and has been expanding, recruiting households in northern Indiana and along the Ohio, Illinois and Kentucky borders.
Location decisions were made based on clustering cases in areas with higher population, so we can maximize our resources but still create a data set that represents the state as a whole.
Engaging the community
Through newspapers, radio, and television, we are reaching out to communities across Indiana to inform them of our study, to describe our goals, and to give the opportunity for Hoosiers to let their voices be heard. We are working closely with the Indiana Clinical and Translational Sciences Institute Community Health Partnerships program to facilitate outreach to all communities. We are also working with the Indiana University Center for Rural Engagement to strengthen our efforts in Indiana’s rural areas.
We will use these same channels to share the outcomes of our research when the time is right. We want you to know that your voices have been heard! Research findings will be communicated to the participants and the community via mechanisms including research briefs, news reports, blog posts and podcasts. The Community Health Partnerships team and the Center for Rural Engagement are collaborating with us to explore other opportunities to provide feedback that will keep Indiana communities informed of our activities and may help us change Indiana public health goals and strategies in the future.
This study will change the way healthcare is delivered in Indiana, ensuring that Hoosiers receive the best and most advanced medical care available. The information we learn will also contribute to changes in public health policies that, in collaboration with the Indiana State Department of Health, will improve the health of our communities for years to come.
We envision that a great deal of research will be conducted using these data across many academic disciplines and schools and our results will be presented across a wide range of outlets including conferences, workshops, peer reviewed and invited publications.
The participant group we establish will be a great resource for health researchers across the state. With appropriate resources this group can facilitate future genetic medicine research, behavioral research targeting high-risk populations, and other research that seeks to address Indiana's key public health concerns.
The participant group will also become an important resource for assessing Indiana’s knowledge of and readiness to adopt new types of medical treatments and could also serve as a means to gauge public opinion about health policy changes, future research strategies and other important health research concerns that would benefit from community opinion and input.
With the help of Indiana’s residents, we will be establishing a research infrastructure that will be incredibly valuable for existing and future medical research. Indeed, we believe that the relationships we create during this study will form the foundation for countless new research studies, from small to large, that will change the face of medicine and public health both locally and nationally.
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Frequently Asked Questions
The goal of the Person to Person Health Interview Study is to better understand how a person’s social environment, culture, behaviors, genetic traits and physical environments affects a person’s health and risk for certain diseases. We also want to learn your opinions about mental health and addictions and how you, your family and your community have been affected.
People participate in research for many different reasons. Three common reasons people take part in a study are to help others, to have their opinions heard, and to help advance science. Your participation will help us learn more about the health and well-being of Indiana residents. With your help, we can better understand the health challenges that are facing your local community so that we can work to address those and make our communities stronger, healthier, and safer. Your saliva samples, life conditions and experiences, and medical records will also help researchers unravel the causes of disease and new treatments. Participants have found the interview interesting and enjoyable.
If you agree to participate, there will be only one 120-minute study visit that will take place in your home or another mutually agreed upon location at a time convenient to you. This visit will include:
⦁ Answering a questionnaire (approximately 90-minutes) administered by a trained interviewer.
⦁ Allowing audio recordings of your opinions and experiences in your own words.
⦁ Allowing physical measurements to be taken, including blood pressure, oxygen level, pulse, height, weight, and waist/hip/neck circumference.
⦁ Providing a saliva sample by spitting into one plastic tube provided to you.
We understand that you are busy and thank you for considering being part of our study. We can conduct the interview with you whenever it is convenient. We can even do part of it at another time, if that works better for you. Since you have been randomly selected, it is very important that you participate in order to ensure that your community is represented and that our findings accurately represent all Hoosiers.
Your household’s address was one of only a few thousand throughout the state of Indiana that were randomly selected to participate in this research. Your household will be representing many households in your local community.
You will receive up to $125 for participating in all parts of the study. You will receive $75 for completing the main questionnaire and measurements, $25 for providing a saliva sample, and $25 for answering the drug abuse and addictions questionnaire.
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. However, if you prefer, we will identify a public location (like a local public library) where the interview can be conducted with minimal interruptions and as much privacy as possible.
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.
While the Person to Person Health Interview Study 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 any other purpose.
IU has a biobank where your sample will be stored. This is a permanent facility that already holds thousands of samples. There is no time limit for how long your samples will be stored.
For the Person to Person Health Interview Study, we will be interviewing 2,000 residents of Indiana for the next two years. Each person will only participate for about 2 hours. If it is not possible for you to be available for a 2 hour period of time, we are happy to schedule a couple of visits to get the study completed.
Yes, you can get the results of the study, but it might take a while until we have enough cases to provide useful results and protect your individual data. After all participants in the study have completed the study requirements, the data will be analyzed and the results published in scientific journals. After the results are published, we can share the results with you if you request them.
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.
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.
We understand your concern and are dedicated to keeping your answers confidential. All research projects must be approved by an Institutional Review Board. Their job is to protect participant safety, welfare and confidentiality. IU’s Institutional Review Board has approved this study.
As researchers at Indiana University, we have the utmost concern for protecting our participants’ data. While no one can guarantee complete confidentiality, we have taken many steps to ensure that we protect your personal information, including:
⦁ 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 access 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 or databases in which results may be stored.
You may also choose not to answer any questions or provide any information that you do not want to.
The researchers for this study are also happy to talk with you about how your personal information will be protected. You can contact Dr. Hank Green at 812-855-6005, or by email at firstname.lastname@example.org or Dr. Bernice Pescosolido, at 812-855-6256, or by email at email@example.com.
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.
This is not a study for insurance companies. This is medical and social research. We will not share your health information with any insurance company. But, if you are injured while taking part in the study and you have insurance, your insurance may be billed.
No, we will never sell your address or phone number.
The Person to Person Health Interview Study is being funded by Indiana University as part of Indiana University’s Grand Challenges Program. For more information about this program, please visit https://grandchallenges.iu.edu/.
The Precision Health Initiative (PHI) is an exciting new IU research program with a goal to help researchers learn more about what affects people’s health. The goal is to have these research discoveries lead to more personalized care and treatments.
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, your family health history and even your genetic profile. 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 personally tailored treatments that will work best.
We all want to live long and healthy lives. People who do health research are helping doctors and other health care providers learn better ways to keep us healthy and find new medicines and treatments for when we do get sick.
To schedule an interview, please call Karen Tucker, our study director at Indiana University, at 1-844-875-0057. You may also have received a door hanger with the phone number of the professional field interviewer who will be interviewing you. If so, please call your interviewer to arrange an interview time. If no one answers, please leave your name, complete address and a phone number and we will return your call promptly.
For any questions about the research study you can contact the researchers, Dr. Bernice Pescosolido, at 812-855-6256 or Dr. Hank Green at 812-855-6005.
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.
Our interviewers are not medically trained and can’t offer you any medical advice. We urge you to talk with your healthcare providers for answers to your personal health questions.
There are many helpful websites that may help you find a health care provider. A few sites that may be helpful are: