Patient & Community Engagement in Research
Background
Patients and communities who experience disproportionate burdens of illness due to social inequities, including racism, socioeconomic position, invisible disability and barriers to accessing quality healthcare, have been historically discriminated against in research. Meaningful efforts to engage patients and communities in the design and implementation of research are important to redress historical harms and shape a path to reducing health inequities. It is important to engage communities, and excluded sub-groups within communities, to ensure we are reaching people with unmet healthcare needs due to access barriers.
Opportunities for patient and community engagement in basic science may be more limited than in the clinical setting but are nevertheless imperative for the development of therapies. Patient and community perspectives can help to shape research priorities and ultimately improve outcomes for patients, communities and families. Engagement at this fundamental stage of research can help researchers to more closely examine the scientific problems they are trying to solve, ultimately resulting in therapies that are accessible and inclusive.
Patient and Community Engagement in Research Committee (PCERC)
Mandate
At Unity Health Toronto, we are committed to serve Toronto’s diverse urban communities and democratize access to high-quality care for people experiencing marginalization.
The mandate of the Patient and Community Engagement in Research Committee (PCERC) is to:
a) implement innovative models of engagement with our patients and community stakeholders through multi-level capacity building;
b) prioritize equity in our frameworks and processes and strive for reciprocal value generation with our patient and community partners; and,
c) apply dedicated Unity resources to create consistent, mutually beneficial and lasting structures (ex. HR and financial structures) and to respect and cultivate this relationship with our most valued partners (community and patient members).
PCERC provides advice to the Research Leadership Committee on the existing opportunities and barriers related to patient and community engagement in the design and implementation of research, and supports the research community by developing resources and organizing learning events.
Objectives
PCERC will:
Establish institutional structures for equitable and ethical patient, family and community engagement in the design and implementation of research and innovation, in close collaboration with the Unity Health Toronto Patient Experience and Community Engagement Office and the Care Experience Institute.
Integrate PCE best practices into select priority areas of the Care Experience Institute, to create the very best care experiences for Unity Health Toronto patients and families.
Co-create best practices and build the research community’s capacity for partnering with patients, families and communities in different research contexts, defining specific approaches for value generation and harm prevention.
Forge strategic partnerships with patient and community groups and organizations whose needs and expertise align with our research foci.
Unity Health Toronto's Resource Guide for Engaging Patient and Community Partners
Unity Health Toronto’s Research community worked together to develop a three-level Resource Guide tailored to any researcher who intends to start learning or expanding their knowledge of equitable patient and community engagement in the design and implementation of research studies.
Equitable Payment of Patient and Community Partners
Concerns were brought forward to the Patient and Community Engagement in Research Committee (PCERC) regarding the equitable payment of Patient and Community Partners (PCPs) on research teams. Examples of inequitable payment practices include PCPs receiving no/late payment (ex. waiting 2-4 months for payment) and PCPs having no control over their payment methods (ex. receiving cheques/gift cards when cash is preferred). Equitable payment practices and processes for PCPs are payment strategies that center PCP’s needs. A priority for PCERC is creating equitable payment practices and processes for patient and community partners (PCPs) on our research teams.
Petty Cash Flow Accounts
Previously options were limited in the way in which PCPs, as well as research participants were paid, often relying on gift cards or cheques with processing delays. PCERC recently identified how using Petty Cash Floats not only opens up the payment options available, but also allows for instantaneous payments with e-transfers.
A Petty Cash Float is a small amount of money that is kept on hand in a bank account for the purposes of paying for research participation or Patient and Community Partner (PCP) participation in a study, committee or research team. Please note that a Petty Cash Float cannot be used for vendor payments.
In collaboration with Research Finance, PCERC has developed a FAQ for using Petty Cash Float Accounts to pay PCPs as well as updated the Steps to Set up, Operate and Close a Petty Cash Float, both found on the Petty Cash Float page on UnityNet Intranet. Please visit the Petty Cash Float page for all relevant information and forms.
Should you have any further questions or feedback regarding using a Petty Cash Float to pay PCPs, please reach out to ResearchFinance@unityhealth.to.
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