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FAQ (Frequently Asked Questions)

Why is this project important?

This project hopes both to educate participants and get their advice.  Our goal is to bring together people with different backgrounds, opinions and life experiences to find out what is important for making more informed health-related decisions. The advice and recommendations of the group will be used by organizations involved with developing guidelines for designing and evaluating decision aids. The long-term goal is to improve healthcare by improving people's understanding.

 

When and where is the event?

The public deliberation will take place over two weekends:

Date: May 6-7 and May 20-21, 2017

Time: 9am - 4:30pm

Location: Health Information and Translational Sciences Building (IU School of Medicine), 410 W. 10th St., Indianapolis, IN 46202

For more details, please visit the event info page here Event Info.

 

Will participants be compensated?

Participants will receive $125 for each day attended for a total of $500. Their travel or mileage expenses will be reimbursed. Lunch, snacks, and refreshment breaks will be provided each day.

 

Who can participate?

An invitation letter and brochure were mailed to many randomly selected households within Indianapolis and the surrounding counties. Participants will be selected from all the adults who received the invitation and contacted the project office to let us know they are interested. Thirsty-two (32) participants will be selected and an effort will be made to ensure that the group matches the diversity of Indianapolis and the surrounding counties.


What is a decision aid?

People often have to make decisions about their medical care.  Increasingly, people are given a "decision aid" to help them choose. A decision aid is a pamphlet, video, or website that explains the options and the pros and cons of each. The goal is to help people decide which choice is best for them.

 

What is a public deliberation?

A public deliberation is based on the idea that members of the community should have a voice in decisions that may effect them.  It allows members of the general public to learn about a challenging issue, share their perspectives on it, and work together to make recommendations for policy or guidelines.  Our event will focus on making recommendations to those who make or evaluate decision aids so that they can support good healthcare choices.

 

Do participants need to know anything about these issues?

No.  We are note expecting the participants to have any specialized knowledge about decision aids or healthcare decision making.  Instead, they will have the opportunity to learn everything they need to know to contribute with the other participants.  The research team will provide the participants with all the information they need and will always be on hand to answer any questions.  It is the participant's perspective and experience that matter - not their expertise.

 

What will happen at the event?

The public deliberation will take place over two weekends:  May 6-7 and May 20-21, 2017.  The first weekend will include presentations from speakers who will provide insight into the issues.  During the second weekend, participants will work in small groups and then all together to discuss these issues and share opinions.

Some of the issues presented will center on:

  • What information is needed to make an informed choice

  • How to effectively explain risk

  • What factors impact patients' understanding of health-related information

  • What features of a medical procedure are critical to know about and which are not as important

To provide context for the discussions and to understand the issues better, the event will focus on decisions about cancer screening, especially tests to check for colon cancer.

There are no tests, and no right or wrong answers. We want only your honest opinion. A moderator will keep the discussion friendly. The participants should feel like they are sitting at a kitchen table talking with friends, some of whom will agree and disagree as the conversation unfolds.

 

Who will get to see the information and what will they get to see?

Only the project team will ever see the information from the event.  The discussions will be audio-recorded, though none of the comments, suggestions or opinions provided will ever be linked back to the participants.

The conclusions from the event will be written-up and sent in report to organizations involved with developing guidelines for designing and evaluating decision aids. In addition, the results will be submitted to our funding agency, Patient-Centered Outcomes Research Institute (PCORI) and posted on PCORI's website.

We encourage all participatns to refrain from disclosing the identity of participants outside of the event.

 

Who is organizing the event?

Designing Decision Aids:  A Public Deliberation is being organized by Dr. Peter Schwartz and the Indiana University Center for Bioethics (IUCB).  The IUCB is dedicated to serving as a local, state, and national resource in bioethics research, education and policy.  To learn about the IU Center for BIoethics, click here Home.

The research team is comprised of faculty and staff from Indiana University School of Medicine and School of Nursing with expertise in health services, health communication, epidemiology, and ethics.  Their research focuses on patient decision-making and risk communication in preventive medicine.  The IU researhers collaborate with experts at the University of British Columbia, the University of Guelph, and the University of Michigan who have international experience designing and testing methods to support public involvement related to healthcare policy.  To learn more about the project team, click here Our Team.

This work is supported through a Patient-Centered Outcomes Research Institute (PCORI) Award (CDF-1403-11040).  To learn more about PCORI, click here pcori.org

 

Who do I contact to learn more?

If you want to learn more, please contact the project team:

Phone: 317-278-3254

email: iucbdas@iu.edu

or go to our project's home page by clicking here Designing Decision Aids and send us a message


IU Center for Bioethics | 410 W. 10th St., Suite 3100 | Indianapolis, IN 46202 | Tel: 317-278-4034 | Fax: 317-278-4050