- Patients and carers contributed significantly to the protocol for a large UK-based multicentre NIHR Health Technology Assessment- funded study (MUSTARDD-PD) researching the management of people with mild dementia associated with Parkinson’s disease. People provided constructive ideas around how to raise the subject of dementia with this target population, and suggested alternative wordings to make all the study practicalities much clearer.
- The PURPOSE (Pressure Ulcer Programme of Research) team at the Leeds Clinical Trials Research Unit found the pressure ulcer community to be a seldom heard group due to the lack of an existing service user/carer group and the complex health needs of many people in the community. Therefore, a small network of service users, carers and family members with some personal experience of preventing or living with pressure ulcers was formed.
A flexible ‘asset based’ approach to involvement was used to take on various roles depending on skills, needs and the level of commitment the members felt able to give. Preparation workshops supported this process by enabling network members to reflect upon their experience and expertise. Research opportunities are sent out to the network as they arise. They also offer opportunities for people to contribute from home, allowing input from people with work/carer commitments or mobility issues.