Table 9 Recent population health primary studies addressing PPI.

Data-driven

Johnson et al. [49]

• There is little guidance on how to meaningfully involve the public in big data research.

• Involvement in big data research is significantly limited in comparison with other study designs.

• May be because common approaches to public involvement adopted in primary data research are not appropriate within big data analysis studies.

• The highly data driven discussions that underline this type of research can present a barrier to public involvement.

• There is now growing recognition that public involvement in big data research requires special considerations.

Data-driven

Hobbs et al. [50]

Enhance public forum members’ personal development in data-intensive health research through a personal development portfolio:

• Personal Profile - Personal details including education, qualifications and employment

• Relevant Experience - Volunteering and personal experience

• Training Record - Training events attended and events where been trainer or facilitator

• Personal statement - Overall description of skills and experience they may have gained from involvement activities

• Involvement activities - Summary of each activity, skills and experience gained, evidence such as certificates or feedback and personal reflections on their involvement in this activity

• References - Details of relevant individuals and how known to the public contributor.

Data-driven

‘Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research’ [51]

Key Principles for Public Involvement and Engagement in Data-Intensive Health Research –

 1. Have institutional buy-in

 2. Have clarity of purpose

 3. Be transparent

 4. Have two-way communication

 5. Be inclusive and accessible to broad publics

 6. Be ongoing

 7. Be designed to produce impact

 8. Be evaluated.

Complexity

Van Voorn et al. [52]

• Involving patients in health economic research will require a serious investment of time and money for patients to get to a level at which they can contribute.

• Patients need to be able to ‘rise above’ their condition - to find an interest in the material itself and have an objective view.

• Proper selection procedures will have to be developed.

Representation & data-driven

Jewell et al. [53]

Report on the setting up of a service user and carer advisory group supporting data linkage in mental health research.

• The general public feel that the complexities of data linkage research may be difficult to explain in lay terms and that patients and the public have limited knowledge about data, anonymisation, aggregation, and the regulations surrounding these.

• Training sessions were set up for all new group members. Training sought to provide members with information about data linkage, including the information governance procedures in place to protect the personal data of service users.