Lived experience involvement at a project governance level: Implications for Primary Health Networks (PHNs) into the future
Why talk about lived experience representation on project governance groups?
Many of our projects, particularly in the PHN space, are guided by project steering groups. We genuinely believe that meaningful participation at a project governance level leads to better project outcomes and promotes ownership of the project. Stakeholders who are involved in project governance groups have the opportunity to provide feedback on the overall approach for the project, ensure that the project is being delivered in line with what was agreed and ensure that the findings of the project meets the needs of the organisations they represent.
In the PHN environment, project steering groups often consist of PHN staff (executive, portfolio and commissioning representation), peak bodies (representing a client cohort or interest), primary care providers, hospital staff (executive leaders and practitioners) amongst others. It is becoming commonplace to have representation from community members - specifically individuals, family members or carers who have a lived experience of the issue that the PHN is exploring. While we absolutely support lived experience representation on project governance groups, we also acknowledge the specific skills and interests required to ensure that participation is meaningful rather than tokenistic.
Genuine involvement at the project governance level can have a significant impact on the direction and outcome of projects. By enabling genuine opportunities for lived experience involvement we are improving the overall quality of services for individuals at risk of adverse health outcomes. Unlike involvement in general community consultation activities, governance-level lived experience participation is relatively immature and there is a fair way to go if PHNs (and the health sector in general) are committed to unlocking the full potential of the lived experience community and workforce.
Considerations for lived experience representation on project governance groups
Based on feedback from lived experience individuals and our internal reflections over the projects that we have completed we have observed a number of strengths and areas of improvement for genuinely incorporating lived experience in project governance mechanisms:
Lived experience representatives are passionate about ensuring projects and services meet the needs of individuals, family members and carers. Their passion and focus can be harnessed to deliver projects that truly reflect the needs of the community within the right environment and with the right support.
Project governance environments can be intimidating - they are often made up of relatively senior professionals who are accustomed to working in fast-paced environments that lead to important decisions. Project steering groups attract passionate and opinionated people producing robust conversations which are not always easy to follow nor allow for equal contribution.
What is raised and explored in project governance meetings can be ‘dry’ - while some people find participating at a strategic or systems level a meaningful and rewarding experience, it may not be for everyone. The focus of project governance is on the delivery of the project and how the activities of the project interact with its stakeholders.
Participating at a project governance level ensures that the lived experience voice is embedded throughout the project design - it’s different to, and does not replace, the participation of people with lived experience in consultation activities during a project’s implementation.
Where to from here? Implications for PHNs regarding future practice.
PHNs are in the ideal position to effectively utilise lived experience participation at the project governance level. By doing so, projects and services will be designed through a lived experience lens from the earliest possible point. To make this happen, PHNs can consider a number of activities to build the capability and capacity of lived experience networks and advisors:
Invest in development project governance, project management and strategic advice capability in their existing pool of lived experience representatives
When onboarding new lived experience representatives (either directly or through commissioned organisations) incentivise the recruitment of lived experience representatives who are interested in delivering strategic level advice
When issuing expressions of interest for project specific governance groups:
Ensure that all stakeholders that are involved in the governance group are aware that lived experience representation is valued and that space should be created for them to express their thoughts and opinions.
Make explicit in the Terms of Reference what will be required from lived experience participations i.e. project governance and strategic advice vs. participation in focus groups and interviews.
Show your lived experience representatives they are valued and appreciated for their contribution
Provide opportunities for up-skilling lived experience representatives who have an interest and passion in governance level participation however may lack appropriate skills to do so.