Opportunities - Patient Advisory Committee - Patient/Family Opinions about Formal Consent in Low-Risk Intensive Care Unit (ICU) Studies

Patient and Family Opinions about Participating in Low Risk Intensive Care Unit (ICU) Studies Without Formal Consent

Background

  • Pragmatic research projects study low-risk routine medical treatments where there are unnecessary differences between doctor practices. 
  • Pragmatic research projects usually involve analyzing health information of hundreds to thousands of patients who receive routine care. Because of the large number of patients involved, it isn't possible to individually speak to and get consent from every patient. 
  • We want to know more about how patients and/or their families feel about not providing formal consent (also called waiver of consent) for low-risk pragmatic research studies. 

Invitation

Pragmatic research has the potential to improve health care practice quickly and inexpensively, however it is important that we understand how patients feel about these studies and waiver of consent before we proceed with further research. 

We are inviting you to join a Patient Advisory Committee (PAC) because we need input from people who have been patients or family/friends of ICU patients, and from the general public. 

With your help, we will develop a survey/questionnaire that will allow us to ask former ICU patients and their families and friends about their opinions on waiver of consent. 

Requirements

We are looking for people from Edmonton area who have experienced a stay in the Intensive Care Unit (ICU), either as a patient or as a family member or friend of a patient. We are also seeking input from the general public who have an interest in clinical research. 

Role and Responsibilities

We need your feedback on: 

  1. The wording of a survey and interview we would like to conduct with previous ICU patients or families/friends. This would involve reading the survey to see if it makes sense and completing the survey to see if it's easy to fill out.
  2. What is the best way to contact and engage people in the survey and interview?
  3. What is the best way to provide the results of our research to the general public?

Should you choose to become a member of the Patient Advisory Committee, you can withdraw from the Committee at any point in time. 

Time Committment

  • The PAC is expected to start in January, but that may change. 
  • A one-hour in-person meeting for introductions and to receive more information about the project. 
  • One hour to review a copy of the survey and interview guide at home. 
  • A one-hour in-person meeting to discuss the survey and interview guide and provide feedback. 
  • An optional one-hour in-person meeting to be presented with the final draft of the survey/interview questionnaire. 

Compensation

  • Out-of-pocket expenses such as parking will be covered or reimbursed. 
  • Snacks will be provided at the in-person meetings. 

Contact Information

If you are interested in being a part of the Patient Advisory Committee, please connect with us! We are happy to answer questions and provide you with any other information you need! 

Project Manager: Dawn Opgenorth - dawno@ualberta.ca OR 780.492.4698

Principal Investigator: Dr. Sean Bagshaw - bagshaw@ualberta.ca OR 780.248.1256

 

Thank-you for taking the time to consider. Please pass this along to others who may be interested.