The next steps

There is a range of opportunities for patient/public representatives to get involved with the work of UKCRN. Each individual Topic Specific Clinical Research Network is developing its own programme of PPI activities to initiate a programme of activities, with support from UKCRN.

These include:

• Involvement in advisory group/committee meetings and clinical study groups across the Networks
• Identifying/assisting with research priorities
• Advising on the design of a study
• Monitoring study progress
• Disseminating study information and results
• Identifying relevant research outcomes
• Assisting with systematic reviews
• Producing research information.

A coordinated approach

In addition to these disease-specific activities, UKCRN is working to ensure a coordinated and best practice generic approach where appropriate, to ensure greater consistency and continued improvement of PPI.

Such areas with some specific examples include:

• Promotion of PPI: supporting researchers on how to involve patient/public representatives
• Provision of guidance documentation: roles and responsibilities; recruitment policy
• Sharing information and lessons: evidence of effective PPI in research; collection of patient/public views and experiences
• Development of common systems/practices: confidentiality agreements; set up TCRN PPI Expert Working Groups
• Training/mentoring opportunities: scientific mentors: identification/provision of training
• Increasing public awareness of clinical research: generic introductory booklet
• Mapping and measuring levels of PPI from the onset to inform future practice: setting the scene for eventual PPI across all diseases.

UKCRN recognises that PPI is developmental. We intend to build on the work of the established Networks, and develop new opportunities. By working with patient/public representatives in addition to clinicians, health care professionals, researchers and academics, UKCRN aims to produce guidance that ensures active involvement, addresses patient/public issues, reflects their views, and importantly, meets their healthcare expectations, to improve clinical research and quality of care across the country.

Information and resources

UKCRN has begun to develop a series of information resources which will support patient and public involvement in clinical research.  They are available to download as follows: