Meet the team: Collaborators for Capacity in Patient & Public Involvement
Senior Research Associate
Institute of Health & Society, Newcastle University
- England - North East and North Cumbria
- Lynne Stobbart, Senior Research Associate, Institute of Health & Society
- Joanne Lally, Senior Research Associate & RDS Research Methodologist, Institute of Health & Society
- Dave Green, Patient & Public Involvement contributor
- Joan Bedlington, Patient & Public Involvement contributor
- Rosemary Nicholls, RDS Consumer Panel member
Meaningful patient and public involvement (PPI) is core to ensuring that research evidence and service improvements are relevant to those they impact on. PPI contributors require support to enable effective fulfilment of their involvement roles, but much available training has been developed from the researcher/improvement community perspective. We found this problematic as it often does not match the needs of PPI contributors. In a previous small budget but BIG outcomes study we worked with a range of people who get involved in our research and service improvement projects, to develop a framework of support and training for PPI contributors that reflects their needs. During a public consultation on our innovative framework we further worked with PPI contributors and colleagues from our local research/improvement community to populate the framework with ideas for PPI-relevant resources, courses and events. In addition to the support and training framework, our work also resulted in the co-design of an on-line PPI Peer to Peer Support Forum https://www.voice-global.org/groups/patient-public-involvement-peer-to-peer-support-forum/. This forum aims to build capacity in the PPI community by facilitating learning and sharing of best practice amongst PPI peers. Members of the forum can interact with each other by posting questions or group discussion topics.
Despite limited resource we achieved A LOT with our foundational work, which reflects our collective passion, enthusiasm and dedication to making involvement as accessible and meaningful as possible for PPI contributors. Many of the support and training needs identified by PPI contributors within this work focus on empowerment, relationship building and effective interactions, and relate to the training of professionals as well as PPI contributors themselves. We will build on this work to co-develop a suite of capacity-building resources that have broad benefits for both PPI contributors and the research or improvement professionals they work with. Project team members contribute to local training and support for researchers and improvers on PPI, and are therefore aware of attitudes, misconceptions and concerns within this community.
Shared-learning events that bring the two communities together to develop aspects of support and training activity will be a key component of our proposed programme of support. The aim is to overcome mutual tensions and concerns that inhibit truly collaborative PPI. We also wish to make the support and training that we develop as widely accessible as possible to the wider patient and public population, via a broad range of media. This is essential to begin to address the current lack of diversity amongst the PPI community. Maintaining our co-production approach we will work with all relevant stakeholders to co-create a programme of support and training, and a suite of related resources.
Our suite of resources will include structured induction sessions, a taught programme delivered jointly by PPI and research and improvement professionals, fun and interactive learning events, self-learning resources, online/you-tube tutorials, and processes that enable peer-to-peer learning. We will explore development of an on-line MOOC. Resources will be developed that support and benefit patients and members of the public who get involved with our work, and the professionals they work alongside, to fulfil their involvement roles to their full potential.
We work collaboratively across several sectors encompassing academia, NHS – including NIHR infrastructure, and voluntary, community and social enterprise. For example, we work in collaboration with the NIHR Research Design Service, Clinical Research Network, and Voice. Further, the North East Network ‘Creating Connections’ will provide a network and a platform for the proposed development. Our plan is that the co-developed training will be openly available to all, thus maximising reach and impact. We will develop monitoring and evaluation tools to capture engagement with the training, as well as feedback on its perceived impact on learning. We will also develop mechanisms for capturing the growth in capacity and capability in PPI skills and practice for both PPI contributors and the research/improvement community.
We will invite input from the Q community in developing our programme of work. As the proposed programme of co-development of resources progresses it will be invaluable to have experienced members of the Q community test and comment on the early drafts. In turn, the resources we develop can be shared through the Q community for wider use and Q community members will have access to our extended networks which may facilitate further collaborations.
How you can contribute
- 1. We would value your reflections on our idea
- 2. Can we improve it?
- 3. Is anyone else developing similar resource for building capacity in PPI?