Webinar #3P: How you can contribute to research

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Presentation transcript:

Webinar #3P: How you can contribute to research Project BRIDGE: Building Research Initiatives by Developing Group Effort This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (Contract # EAIN-7111).

At the end of this webinar, you will be able to: 1. Talk about roles you can play in research. 2. List at least two questions you can ask about research.

Aphasia Example

What can people with aphasia and caregivers do? Step 1: Ask a Question: What can people with aphasia and caregivers do? Researchers need to… Write a very specific research question Provide input on which topics or questions are most important to you

What can people with aphasia and caregivers do? Step 2: State a hypothesis: What can people with aphasia and caregivers do? Researchers need to… Choose exactly how to do the research Help create materials that explain your research in an understandable way Provide input on which outcome measures might be most meaningful

What can people with aphasia and caregivers do? Step 3: Conduct an experiment What can people with aphasia and caregivers do? Researchers need to… Write an application to get approval to do research on humans Help ensure that the recruitment materials and consent process are clear and understandable Help recruit participants by distributing information or posters

What can people with aphasia and caregivers do? Step 4: Analyze the results. What can people with aphasia and caregivers do? Researchers need to… Analyze the data Provide a different perspective on the data or results

What can people with aphasia and caregivers do? Step 5: Make a conclusion What can people with aphasia and caregivers do? Researchers need to… Write up the results and publish it. Suggest places to publish that will be important to people living with aphasia Provide feedback on any drafts that are intended for patient partners or other lay audiences Have a great discussion about what should come next

Questions you can ask a researcher Help me understand your research.

Questions you can ask a researcher 2. How could your research change things (e,g., how might it help someone like me)?

Questions you can ask a researcher What can I do to help you? Please show me what you are asking me to do.

Questions you can ask a researcher 5. I have an idea. Can I share it with you?

Researchers and Clinicians People with aphasia and family members Everybody can help. Researchers and Clinicians People with aphasia and family members Have a lot of special knowledge and skills Are trained to do research Want to work with you Want to listen to your ideas May be very busy! Are affected by research – whether you know it or not Can give their opinions and views Can help researchers Get people to participate Make information understandable

Research helps us… Understand aphasia better Come up with new therapies Know which therapies are best for which person Change policies and practices

Mark your calendars for the BRIDGE conference, October 19 & 20, 2018 People with aphasia and their families Researchers Therapists or Doctors More info at: www.aphasia.org/

Have you participated in a PCORI event or initiative Have you participated in a PCORI event or initiative? Are you interested in learning more about patient-centered outcomes research and how to inform your community about making better health decisions? Are you interested in partnering with PCORI to disseminate and implement PCOR research findings? Become a PCORI Ambassador https://www.pcori.org/engagement/engage-us/become-pcori-ambassador