Engaging with the public to co-produce a framework for involving the public when developing national clinical guidelines or audit

ID: 

316

Session: 

Poster session 3

Date: 

Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Lambert V1, O'Connor O2, Matthews A1, Corrigan C1, Kirwan M1, Doyle P1
1 Dublin City University, Republic of Ireland
2 MediStori, Republic of Ireland
Presenting author and contact person

Presenting author:

Veronica Lambert

Contact person:

Veronica Lambert
Abstract text
Background: Involving the public (including patients) in national clinical guideline and audit development is important because public perspectives of healthcare processes, priorities and outcomes may differ from those of healthcare professionals. Issues that the public are really interested in are addressed and it is not just the decisions of the healthcare team that determine best practice for optimal clinical outcomes.

Objectives: To engage with the public in Ireland to co-produce a framework, including a values statement and associated guidance documents, to support public involvement in national clinical guideline or audit development.

Methods: A desk-top review of public involvement practices in guideline/audit development internationally, a consultation process using vignettes with multiple public stakeholders and continual engagement with an expert advisory panel.

Results: Seven core values for working directly with the public underpin the framework: dignity and respect; support; transparency and openness; learning and responsiveness; inclusivity, fairness and diversity; sustainability; collaboration and partnership. The framework presents five levels of public involvement (i.e. informing, consulting, involving, collaborating and empowering) and five stages to consider when involving the public: defining and guiding involvement; methods for public involvement; support and training for involvement; informing and educating via involvement and evaluating public involvement.

Conclusions: This public involvement framework is important to guide and support chairpersons and members of guideline and audit development groups who are planning or leading a national clinical guideline or audit project because difficulties can arise in making public contribution meaningful when uncertainty exists on how best to involve the public.

Patient or healthcare consumer involvement: Our experience throughout this framework development process was greatly enhanced by engaging with the public in a number of ways, including: having a public member as part of the framework development team, continually engaging with an expert advisory panel comprised of public representatives and public representative organisations/advocates, and conducting an online public consultation inviting public views on scenarios about public involvement practices, which all informed the framework design.

Relevance to patients and consumers: 

This initiative involved designing a framework for public involvement in national clinical guideline/audit development in Ireland. Members of the public co-produced the framework. A key message from the public was to ensure public involvement is not tokenistic but authentic collaboration where guideline/audit development groups work directly with the public and empower them throughout all stages of the process. The public highlighted the need for a clear structure of how public involvement is conducted, a clear purpose and objective for public involvement from the outset and commitment from everyone to the practice of public involvement.