Patient and Public Involvement Principles
- The views and perspectives of people affected by these conditions should inform the DeNDRoN strategy
- There should be an open and transparent system of active patient and public involvement in all DeNDRoN activities
- Involvement should be at all stages and all levels of the research process
- The role of people affected by these conditions within the different components of DeNDRoN should be clearly defined
- There should be active involvement in all key national and local DeNDRoN committees. There should be two lay members of these committees
- The timing and venues of committee meetings should take into account the needs and preferences of lay members
- Training, mentoring and support should be provided for people affected by these conditions and researchers.
- Information about DeNDRoN should be accessible to patients, carers and the public
- Duplication and fragmentation with other patient and carer involvement initiatives, eg, UKCRN or other agencies should be avoided
- The impact of the programme should be evaluated