Abstract
Introduction
Learn from patient partners how we developed our roles and contributed recommendations by incorporating a peer-led patient partner working group. We will demonstrate scalability and sustainability of this joint ownership model co-developed and fostered by a healthcare organization and a community of patient partners.
Key to success is the creation of a continuous learning environment (the working group) where patient partners share experiences and gain diverse perspectives from one another, thereby strengthening their role and project contributions, while improving overall engagement satisfaction. The projects benefit from the increased depth of contribution and subsequent decisions made.
Aims Objectives Theory or Methods
We will demonstrate how experienced patient partners worked with the Centre for Digital Health Evaluation (CDHE) to co-design a partnership structure that supports the CDHE and creates a learning environment within the patient partner community.
The structure is based on the principles of integrated leadership, defined accountabilities and mutually supportive relationships. The patient partner community includes a peer-based working group that supports patient partner capacity and expertise development.
Overall, while this approach was developed to nurture trust and support more substantive contributions in increasingly complex projects, it has also increased the meaningfulness of the engagements for the patient partners.
Highlights or Results or Key Findings
The Patient Partner Community (PPC) began with two experienced patient partners working with the CDHE as leads for the engagement co-design. Additional patient partners were selected based on project needs.
As the PPC grew, a peer-led working group evolved into a collaborative learning community and created deeper connections among members.
In this model, the PPC also supports the development of project plans and budgets. This integrated approach moves a traditional Patient Family Advisory Council to a more active engagement model. The PPC gives patient partners the opportunity to develop their knowledge, skills and confidence resulting in a greater depth of contribution within their projects.
This model has been in place for over 2 years, covering a range of projects from initial planning and research through to published reports. Patient Partners are experiencing more meaningful engagement because they see their views
Conclusions
We have experienced the success of the patient partner-led working group model and believe it can be applied to most patient engagement frameworks. This peer-led collaboration creates a continuous learning community that supports ongoing patient partner needs and increases the value they bring to the organization.
Implications for applicability/transferability sustainability and limitations
Most organizations with patient engagement staff and patient partners could support the introduction of a peer-led working group and the joint ownership model. For sustainability, adjustments to an existing patient engagement framework would need to be made. Trusted relationships are the basis for success.