26 Nov 2020

Bringing together a wide range of experiences and perspectives, in the midst of the pandemic, has meant trying out new approaches. A few months ago, people and groups receiving Together in Research were invited to fill in a questionnaire with their views, take part in an online Active Involvement in Research Day where opinions would also be gathered or both. Questionnaires were also shared through themes.

Over 40 people provided survey responses and over 50 were at the evening event, held in September. Diverse patients with long-term conditions or social care users, carers, South London residents, workers or volunteers in local groups, theme leads or deputies in the ARC, other staff members and others interested in research contributed. Numerous thought-provoking insights and ideas were gathered. The PPI coordinator went through these all carefully, identifying key issues and suggestions, which might be drawn on to strengthen PPI within themes. In addition, with others in the Implementation and Involvement theme, she produced summaries focusing on the ARC-wide strategy and on structures for organising work and reporting on progress.

Workshops were then held, with staff with PPI responsibilities and current PPI contributors across different themes, to discuss these ideas and recommend how these might inform a strategy with clear goals and activities, supported by structures to make it happen. Further work is underway to help put flesh on the skeleton of the strategy, so to speak, including talking through key areas of work with those who might carry them out and finding clear wording, without too much jargon. Finally, the ARC’s Executive and Board will have to agree the strategy, since the National Institute for Health Research will expect them to make sure it is put into practice.