Participatory Research

Module 3. Introduction (Duration: 23 seconds)

- Hi, my name is Zeph. In this module, you'll hear about the roles of different people on a research team. We will look at who can be on a research team, their roles and how you can get involved. We have also added optional videos and reading if you want more details or resources.

Module 3: Research partner roles

• Lesson 1: Who is on a CPAR research team?
• Lesson 2: Roles in the research world
• Lesson 3: What research partners can do
• Something to think about

Lesson 1: who is on a CPAR research team?

• People with autism
• Family members and supporters
• Professionals and researchers
• Advocates and community members
• Consultants and organizations.

What is the difference between research participants and partners?

Research participant: someone who is participating in a research project as a subject of the research.

Research partner: someone who is expert in their lived experience and may be involved in any or all research steps.

Lesson 2: roles on the research team

In general, the role of researcher is to bring scientific knowledge from studies that have already been done on a topic; expertise in research method and process; knowing how to write grants and research articles.

While the role of research partner from the community is to bring knowledge from living their daily lives; improve research design so it is valid, accessible and cost efficient; raise awareness of ableist biases in research and other ethical issues; help research focus on what has real life impact.
There are many roles on a research team including:

• Principal investigator (PI), co-principal investigator (co-PI): in charge of the research.
• Project coordinator: manages research activities.
• Research assistant: helps the project director carry out the research activities.
• Project team member: shares lived experience or expertise in research to make research decisions.
• Consultant: someone outside the research team who provides expert advice based on their lived experience or their job.
• Research partners from the community: may have any of these roles.

Community partners may work with different people at colleges and universities:

• Faculty members: professors who teach courses and or do research.
• Undergraduate students: students who are working towards their bachelor degree.
• Graduate students: students working towards a master's or doctorate degree.
• Post-doctoral fellows: recently graduated researchers who continue to learn under a mentor.

Contributions

Contributions are recognized when sharing research results:

Authors: people who came up with the idea, collected and analyzed data or prepared results for sharing.

Research credits: given to people who shared lived experience, advised on research or reviewed results for sharing.

Lesson 3: what research partners can do

There are seven steps to the research process:

1. Choose a research question: discuss what research questions should be studied. Review the research to see what has already been studied.
2. Plan how to do the research: design the study and what it will be like for participants.
3. Find a way to pay for the study: write grants or do fundraising to pay for team member salaries, participant reimbursement, equipment, et cetera.
4. Find people to participate in the study: recruit participants who meet the requirements of the study.
5. Do the study and collect the data: collect data from surveys, interviews, focus groups and other means. For some studies, this might only take a few days. For other studies, this may take months or even years.
6. Analyze the data and write the results: look at all the data together and figure out what it means; write the results for sharing with others.
7. Understand and share results: the results can then be shared in an academic journal, at a conference, through social media, et cetera.

Research partners can work at any step of the research process. Some people like to come up with the initial research question. Others like to advise on research that's already designed to make it better. Some people like analyzing data to come up with research results. Others prefer to share results of research with their community.

Training or skills needed

Community members are experts in their lived experience. There are generally no training or other skills needed for community members to be research partners. Research ethics training may be required when research partners have contact with research subjects, when research partners work with data that identifies research subjects.

Training that can be helpful: learning about the research process, like in this training; you'll learn more about creating a safe space in the working together training; self-advocacy training can also help build confidence.

Something to think about: What parts of research are you most interested in doing?

Check all that apply:

• Choose a research question.
• Plan how to do the research.
• Find a way to pay for the study.
• Find people to participate in the study.
• Do the study and collect the data.
• Analyze the data and write the results.
• Understand and share results.

You are done with module 3. Click on Next to continue to the activity and click on next module to access the following video.