Table 2 Summary of approaches used by the doctoral researchers to work with patients and the public

Existing patient support group

Defining research question(s)

Consultation

Identified via local patients group search (online) and group leads contacted directly via email

Six weeks from the initial contact to attending the meeting

Focus group, face to face

• Meeting in their own setting;

• May not need reimbursement for travel expenses and/or time above what is already paid;

• Participants familiar with each other and willing to share their views;

• Can be a learning experience for the group;

• Possibility to engage with the group for future PPI activities;

• Informal.

• Facilitation skills and note- taking required;

• Difficulty in finding an existing group aligned with your research;

• Lack of flexibility for meeting dates and times.

Forming new PPI advisory group

Defining research question(s)

Consultation

Advertised via email to existing PPI groups or invited participants from the initial PPI consultations

Eight weeks from advertising to attending the first meeting

Focus group, face to face

• Participants may have prior experience of research and undertaken training;

• Focus of the group is about the research;

• PPI members are part of the research team and thus are invested in the study;

• Researcher leads the group;

• Flexibility of meetings to match the needs of the research study;

• Easier to provide feedback to PPI on their input;

• Easier to measure impact of PPI on the study as their input is continuous;

• Provides additional and ongoing support for the doctoral researcher alongside supervision team.

• Reimbursement required for travel expenses and time;

• Expenses might be required for venue and refreshments;

• Time commitment (organising and delivery);

• Finding existing PPI members with relevant experiences and knowledge;

• Facilitation skills and note-taking required;

• Uncertainty of interest at the recruitment stage;

• Participants not familiar with each other;

• Setting expectations of both PPI and the researcher (we created Terms of Reference documents);

• Training and support might be needed for both PPI and the researcher.

Project development, delivery & data analysis

Collaboration

Consulting with patients in outpatient clinics

Defining research question(s)

Consultation

Direct healthcare team approached patients after their appointments

Five weeks from initial contact with healthcare team to attending outpatient clinic

One to one interview

• Helps build relationships with the healthcare team within the Trust;

• May not need reimbursement for travel expenses and/or time;

• No fee for the venue.

• Local Trust’s approval required;

• Support from direct healthcare team required;

• Participants may be less willing to share their views about the care they have just received;

• More difficult to differentiate between PPI and being participants in research for both PPI members and the researcher.

Existing PPI groups at local hospital Trust

Project development

Consultation

Identified individuals from existing PPI panels at local hospital’s Research and Development department via research co-ordinator and advertised via email

Six weeks from contacting PPI panel members to the meeting

Focus group, face to face

• No expenses or meeting venue fee required as already reimbursed by the local Trust;

• Panel members experienced in research and are familiar with the PPI role.

• Facilitation skills and note-taking required;

• Support required from hospital research co-ordinator;

• May only be accessible to hospital staff;

• Expenses might be required for refreshments;

• Limited time in order to complete activities if one-off meeting.

Existing online

PPI panel

Defining research question(s)

Consultation

Identified group at the local hospital's Research and Development department via research co-ordinator and advertised via email

Three weeks from planning to the first PPI activity

Online questionnaire

• Relatively short timeframe from setting up to achieving objectives;

• No costs for meeting venue or refreshments;

• Panel members already reimbursed by the local hospital Trust;

• Potential to access hard to reach individuals e.g. housebound patients;

• Anonymous process, which may encourage PPI members to express richer views;

• Panel members were able to ‘edit’ participant-facing documents and make suggestions.

• Distance engagement preventing opportunity to correct misunderstandings;

• Support required from hospital research co-ordinator;

• May only be accessible to hospital staff;

• Self-selected members due to digital technology capacity and capability;

• Documents must be ‘readable’ online.

Project development

Consultation