ECHO HIV Psychiatry Registration

CONSENT TO PARTICIPATE IN A RESEARCH STUDY

Title                                                  Enhancing Models of Care for Patients with HIV and Mental Illness Through Community                                                                Collaboration

Investigator                                     Deanna Chaukos, MD, FRCPC
                                                          Robert Maunder, MD, FRCPC

Co-Investigators                             Peter DeRoche, MD, FRCPC
                                                          Scott Bowler, MSW
                                                          Lesley Wiesenfeld, MD, FRCPC
                                                          Sami-Beth Kuchar, MSW
                                                          Alper Celik, PhD
                                                          Maria Mylopoulos, PhD
                                                          Sandalia Genus, PhD
                                                          Zahra Jamal, MSc.OT, OT Reg.
                                                          Alan Wai, MD FRCPC
                                                          Tim Guimond, MD, PhD, FRCPC

Sponsor                                           Ontario HIV Treatment Network

           

Introduction

You are invited to participate in a research study. Please read this brief description about the study and its risks and benefits before you decide if you would like to participate. You should take as much time as you need to make your decision. You should ask the study doctor or study staff to explain anything that you do not understand and make sure that all of your questions have been answered before signing this consent form. Before you make your decision, feel free to talk about this study with anyone you wish. Participation in this study is voluntary.
 

Background

You are asked to participate in this research study because you will be attending sessions of the Project ECHO Ontario HIV Psychiatry as a case worker or mental health worker from a community organization. HIV often affects highly vulnerable people and its effects are amplified for those who are also challenged by mental illness, substance use disorders, a history of trauma and adverse childhood events, and social, economic, cultural, interpersonal contexts that complicates assessment or treatment. It can be challenging to provide care to this population. Providers can feel ill-equipped and unsupported to navigate uncertainty and ambiguity caused by multiple problems, and this can lead to feelings of isolation and burnout.

ECHO is an innovative telemedicine program that offers free, ongoing education about HIV and mental illness. ECHO Ontario uses a one-to-many model of teaching to increase access and build capacity in all participating providers.  By using the ECHO model of virtual sessions for people across Ontario, HIV Psychiatry experts and frontline community workers can come together to create a community of practice. This will be accomplished by sharing knowledge, creating a shared language across hospital and community settings, and the sharing of best practices for caring for this complex population. This initiative has the potential to combat isolation and provide support and resources to improve patient care for this underserved population.

As a participant of ECHO, we are interested in understanding your experiences of Project ECHO Ontario HIV Psychiatry and its impacts on interdisciplinary collaboration in the management of patients with HIV and mental illness. Your consent in the study will be important to policy makers because the ECHO model shows promise as an effective strategy to increase the capacity and access in underserved areas for patients with HIV and mental illness. 
 

Purpose

The purpose of this study is to examine the perspectives of ECHO participants, such as yourself, about experiences of the ECHO, how it has impacted your work with clients, your work in the HIV sector, and if the ECHO has facilitated creating a community of practice.

Study Design

Project ECHO Ontario HIV Psychiatry will use both qualitative and quantitative research methods to examine the implementation and performance of the program. Quantitative methods include pre- and post-ECHO surveys and qualitative methods include focus group discussions and semi-structured interviews.

We are asking ECHO participants to fill out pre- and post-surveys. These will occur before the ECHO begins and after the ECHO ends. If you choose to participate, you will be asked to fill out two online surveys.
 

Study Visits and Procedures

The methods of data collection for this study will be online surveys. This study will include all participants of the ECHO. Each survey will take approximately 15 minutes. These survey may be completed at home online, however if preferred you may complete these surveys at Mount Sinai Hospital.

You will be asked demographic questions, as well as some questions about your experiences of the ECHO, the impacts of the ECHO on your work with clients with HIV and mental illness, your work with people in the HIV sector, how the ECHO could be improved, and if the ECHO has created a community of practice for you. Answers to these questions will help improve the ECHO HIV Psychiatry for future iterations.

A few days before the ECHO begins, the research coordinator will email you study information and the link to the online consent form. You can consent to this study through an online consent form, which will be the first page of the survey. Should you wish to participate in the study, you can provide your name and consent to taking the survey. Once you've consented, the survey will begin. For the post-survey, the research coordinator will email you study information and the link to the second survey. Consent to the first survey means that you consent to taking both the pre- and post-survey. 

Risks Related to Being in the Study

There are no medical risks if you take part in this study, but being in this study may make you feel uncomfortable. You may refuse to answer questions or stop the survey at any time if there is any discomfort.
 

Benefits to Being in the Study

You will not receive any direct benefit from being in this study. Information learned from this study may help others in the future.
 

Voluntary Participation

Your participation in this study is voluntary.  You may decide not to be in this study, or to be in the study now and then change your mind later. You may leave the study at any time without affecting your treatment or employment status. You may refuse to answer any question you do not want to answer. We will give you new information that is learned during the study that might affect your decision to stay in the study. 
 

Alternatives to Being in the Study

If you choose not to participate in this study, you will not be affected in any way. 
 

Confidentiality

Survey responses will not be linked to you personally in any way. All your results are also kept strictly confidential. In order to link your responses to the online surveys completed at each separate time point, we will ask you to provide your full name. Once your survey response has been downloaded from the online server, your name will be removed from the database and you will be identified by a randomly generated numerical code only. Any information connecting you to your data will be destroyed once your participation in the study has ended. You will not be named in any reports, publications, or presentations that may come from this study.

Representatives of the Mount Sinai Hospital Research Ethics Board may look at the study records to check that the information collected for the study is correct and to make sure the study followed proper laws and guidelines.

All information collected during this study will be kept confidential and will not be shared with anyone outside the study unless required by law.  You will not be named in any reports, publications, or presentations that may come from this study. 

If you decide to leave the study, the information about you that was collected before you left the study will still be used.  No new information will be collected without your permission.
 

Expenses Associated with Participating in the Study

There are no anticipated expenses associated with participating in this study. You will be provided with a $15 Amazon gift card for each survey completed as a token of appreciation for your participation in this study.

Questions About the Study
If you have any questions, concerns or would like to speak to the study team for any reason, please contact: Dr. Deanna Chaukos at Deanna.Chaukos@sinaihealth.ca, 416-586-4800 ext.4561; or Sandalia Genus at Sandalia.Genus@sinaihealth.ca, 416-586-4800 ext. 6621.

If you have any questions about your rights as a research participant or have concerns about this study, please call the Mount Sinai Hospital Research Ethics Board (REB) office number at 416-586-4875. The REB is a group of people who oversee the ethical conduct of research studies. These people are not part of the study team. Everything that you discuss will be kept confidential.
 

Consent