Patient & Community Advisory Committee (PCAC)

Varied perspectives, one goal

ONDRI strongly believes that research should respect and appreciate the different goals of research participants and their communities.

As such, the overarching goal of the PCAC is:

To contribute to improvements in research design, effectiveness and impact, in the areas of dementia, stroke and neurodegenerative diseases, by representing people living with these conditions and advocates who work on their behalf.

PCAC offers a unique perspective & essential guidance

The PCAC plays an important role in each of ONDRI’s research phases:

The preparatory phase

e.g. agenda setting, prioritization of research topics and hypotheses

The execution phase

e.g. study design and procedures, participant recruitment

The translation phase

e.g. dissemination of findings and results, study evaluation 

The PCAC’s input has been pivotal in ONDRI’s:

  • Direct engagement with people with lived experience, including care partners
  • Higher rates of enrollment and retention
  • Exemplified ethical mandate
  • Dissemination of findings
  • Translation into clinical practice

The voice of multiple perspectives

PCAC’s members include:

  • People living with one of the diseases studied
  • Care partners
  • Staff or volunteers designated by advocacy/charitable organizations focused on each of the diseases studied by ONDRI
  • At least one researcher/clinician from ONDRI
  • ONDRI program management team designate
  • Ontario Brain Institute (OBI) team designate

Why engagement with people with lived experience is so important

According to the Canadian Institutes of Health Research (CIHR), patient engagement occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge.1 

 

Do you want to join ONDRI’s PCAC?

  • Are you or someone you care for living with dementia, a neurodegenerative disease and/or stroke?
  • Do you want to play a role in research that has a direct impact on the diagnosis, treatment and understanding of dementia and five of the leading diseases that cause it?  
  • Are you interested in interacting with leading health researchers, clinicians, and other stakeholders to help answer some critical questions? 

You may be a good fit for the ONDRI PCAC.

Footnotes

  1. Adapted from “Strategy for Patient Oriented Research – Putting Patients First”, CIHR, 2014