Patient and Public Involvement

Our overall objective in the first few weeks and months is to ensure a research focus that produces knowledge that is seen as relevant to people in their community by ensuring their involvement in all levels and phases of the project.

A proposal has been developed in consultation with the European Parkinson’s Disease Association, and the participating countries’ patient national associations, confirming the relevance and need for this project.

Further involvement will be based on cooperation in the project structure (through the Stakeholders Scientific Advisory Group or SSAG), in the national research team in each participating country, in local working groups where the empirical core work will take place, and at a European level (EPDA) completing the tasks and strategies described below. 

To ensure local involvement throughout the project and in all participating nations, a plan for establishing national project groups with representatives of the public in each of the participating municipality will be developed to ensure that their views are incorporated in processes of design, data-gathering and interpretation and in the process evaluation.

The public represented in this project will be people with Parkinson’s Disease and family carers, and different employees or representatives in different organisations.

The plan for involving people in this work will be based on a dialogue (dialogue model that is anchored in participating and interactive approaches). It is based on the following principles: Engagement of the actors, dialogue between the actors, flexibility and respect.

These principles will be adapted both through a basic training and through consecutively evaluative processesand realised through a clear plan of systematically gathering experience from users involved in development. In these evaluative processes challenges encountered will be used as a basis for dialogue.

PPI representatives (a person with PD and a family carer) will also be part of the SSAG. This way PPI will feed into the design, determination of outcomes-instruments and development of all other work in the project. 

In this project several aspects of the PPI will be defined and tackled in relation to a budget and a work plan that ensure sufficient finances, time and attention to realise PPI strategies.

The profile and representativeness of users and stakeholders in the project, their level of involvement and roles and methods to foster participation will be defined in agreement with all partners and in each country, establishing a good dialogue between users and researchers through the use of a dialogue-model and a 3-4 hour educational programme for users and researchers to work together.

The PPI representatives’ satisfaction with their level of involvement will be assessed when the project is completed, and a comparative frame will be developed for each nation’s description of user involvement as a basis for continual reflection and evaluation of the involvement process for the final crossnational report and dissemination.