Participatory Research

Module 2. Introduction (Duration: 21 seconds)

- Hi, my name is Nicole. In this module, you will learn what CPAR is. You will also learn about who pays for this type of research. Finally, you will learn the difference between being on an advisory board and a research team.

Module 2: What is CPAR?

• Lesson 1: Defining CPAR
• Lesson 2: Who supports this type of research?
• Lesson 3: Different levels of engagement
• Something to think about

Lesson 1: Defining CPAR

Community Partnerships in Autism Research.

CPAR is research done with people who have real-life experience. Research partners are valued and equal members of the research team. Research discussions are accessible, and decision-making is done collaboratively. CPAR is a type of participatory research. It means that the research is done with people who have lived experience. There are other names for participatory research:

• CBPR: Community-Based Participatory Research
• PAR: Participatory Action Research
• CPAR: Critical Participatory Action Research
• PCOR: Patient-Centered Outcomes Research
• and more.

Lesson 2: Who supports this type of research?

PCORI stands for Patient-Centered Outcomes Research Institute. PCORI is the leading funder of research done with a community. It was authorized by Congress in 2010. So far, it has provided more than $3 billion for research. Optional resources. The research that PCORI funds is Patient-Centered Outcomes Research, PCOR, and Comparative Effectiveness Research, or CER.

PCORI also funds engagement (connecting researchers with community partners) and dissemination (sharing information about applying research findings in the real world). A brief list of other funders is included in the optional resources for this module.

Lesson 3: Levels of research engagement

There are three levels of research engagement:

• Input
• Consultation
• Collaboration

Input

Community members are research subjects. The research is about them. This is not considered CPAR. Data is gathered through focus groups or a survey of the community. Providing study data requires limited time and resource commitments. Input is how community partners may first hear about CPAR opportunities.

Example:

For this project, some people provided feedback through surveys like this one or through focus groups.

Building safe space

Many in the autism community don't trust doctors and researchers. Autistic people and non-autistic parents often have different opinions. Some things are hard to talk about. Think about a group that includes autistic and non-autistic people, like doctors, parents, researchers, and community members. What makes it safe for everyone to be heard in this kind of group? What makes it easy to feel safe? What makes it hard to feel safe?

Consultation

Community members provide ideas and feedback for researchers. They usually don't participate in making research decisions. Community partners are advisory board members or outside consultants. It requires additional time commitment. Consulting and advisory boards can be an introduction to doing CPAR.

Example:

Our Center for Disability and Community Inclusion has an advisory council.

Collaboration

Community members are equal research partners and team members. They are involved in decisions about the research. The research is done with them. Trusting relationships and accessible practices make the collaboration work. Collaboration is what makes CPAR a form of participatory research. CPAR is research designed collaboratively from the start.

Example:

Our team came up with the idea for this project. We met regularly to make important decisions together.

Let's talk about tokenism

We say people are treated as a token when someone is invited to join a group, but there is no effort to really understand and value their input. Welcoming different perspectives is hard and takes practice.

You will learn more about creating a safe space when you complete the Working Together training.

Something to think about: For what level of engagement are you ready?

• Input: I am happy to listen to or share lived experience, but I have limited time or resources for participatory research.
• Consultation: I'm interested in a regular relationship to consult on research.
• Collaboration: I am ready to make decisions with trusted researchers and community members to design and conduct new research projects.

You are done with Module 2. Click on Next to continue to the activity and click on Next module to access the following video.