Plans for Patient and Public Involvement throughout the programme

PPI involvement throughout the programme is led and co-ordinated by co-applicants Robinson, Corbett and Tucker; the latter two applicants represent the Alzheimer's Society. Ongoing involvement is achieved through a range of approaches.


Patient/Public Programme Advisory Board (PPAB)

Some of the original priority-setting group from the Alzheimer Society’s Research Network have joined our Patient/public Programme Advisory Group (PPAB); additional members have been recruited from our local North East NIHR DeNDRoN PPI group and Alzheimer's Society PPI Group. The PPAB currently has a membership of 13 women and 3 men. The PPAB oversees overall progress and management of the programme in terms of the identified milestones/deliverables with a particular focus on how best to sustain patient/public involvement and the most sensitive and appropriate recruitment approaches to employ with people with advanced dementia. We have also identified specific objectives for each of our 6 workstreams for the PPAB to consider and address in detail. The PPAB has met three times to date (year 1, year 2 and year 3).


PPI during year 3:

We have incorporated a range of methods, including small group work, interviews and the use of novel, visual mapping exercises to engage the PPI and other key stakeholder views in data interpretation and the production of study outputs for example the development of the ICP and its associated educational resources in WS3. A PPI workshop was held in July 2016, at the Newcastle Biomedical Research Building, Campus for Ageing and Vitality, Newcastle University, to explore the ‘Personalised Care Plan Guide’ concept, provisionally entitled ‘Living for today, planning for tomorrow, supporting my care’.