Patient and Public Involvement Advisory Group Meeting Biomedical Research Centre 9th February 2017-10:30-12:30 Meeting rooms 2&3 Minutes Present Alero Dabor (Chair) Patient Representative AD Nanik Pursani Patient Representative NP Claire O Neill Patient and Public Involvement Project CO Manager Alan Quarterman Public Patient Representative AQ Colin Streete Patient Representative CS Brenda Thompson-Murray Patient Representative BT Ben Sawtell Communications Manager Graham Roper Patient Representative GR Ettie Nicola Patient Representative EN Nzinga Gardner Patient Representative NG Katherine Blackstone Paed. Research Portfolio Manager KB Jeff Hough Patient Representative JH Riz Dakri Patient Representative RD Margarita Sudvajiene R&D Administration officer (finance) MS (minutes) Apologies Jenny Cook Public Engagement Manager/Research JC Associate, KCL Gerry Trillana Senior Clinical Research Nurse GT Chantal Davies Patient Representative CD Peter O Hanlon Patient Representative PO Chris McKevitt Professor of Social Sciences & Health CM Item Discussion Action 1 Welcome, new members and introductions NP introduced Alero Dabor as the new Chair of the PPIAG. AD thanked NP for his time as chair and for his continued support to the group. 2 Minutes and matters arising CS still has issues when viewing his emails attachments but this is due to his internet provider. 1
advised that there needs to be a communications strategy for working with Principle Investigators. CO is still due to arrange another session of mentoring training. All other actions have been completed. CS mentioned that a sentence under item 5 regarding Cardio Vascular PPI Group new members sentence was incorrect. The group did not need to split. The point being made was that some new members were finding it difficult to take part in discussions and Sophie Jones had been asking for advice to resolve this. AQ also pointed out that under item 6 regarding Patient Supporting Patient, the award was not 15K, but 1.5K. 3 Members update CS took part in mock interviews with Clinical Training Fellows researchers in November 2016, which was a great success and good feedback was received. CS also attended Cardiac PPI group meeting which is in process of revisiting the governance. New members had been reassured that their input was needed and some will attend the mentor training. CS went to a recent CLARHC Involvement workshop. A fellow attendee is a member of the BRC stroke PPI group and raised some concerns. CS went to an NIHR meeting where he discussed issuing a certificate to researchers who have been supported by the PPIAG. NP also took part in the mock interviews and would be keen to do so again if payment was agreed. NG is a member of PPI groups for women s health. She has delivered a few presentations on how to support and re motivate women who are suffering or have suffered from pre-term birth or miscarriage. NG got very good feedbacks and presentation was success. RD is very interested in the mock interviews and is in the process of setting up a PPI group for dental. BT also took part in the mock interviews and would be interested in doing more in the future. JH took part in CRISP which is a group working for researchers to get patients to take part in research. Jeff is taking part in 5 research groups including the BRC respiratory group. He has also been able to 1. to follow up and ask the PPIAG for feedback 2. CO to arrange 3. MS to revise the November minutes. 4. MS to revise the November minutes. 5. CO to draft a proposal for repeating this including promotion and recommendation for payment to PPIAG members. 6. CO to feed back to CM 7. CS to follow up with NIHR colleagues and put them in touch with CO 2
secure some funding for the groups AQ delivered two sessions of PPI training to researchers. EN delivered PPI training in December with AQ and NP. EN would like to be involved in subgroup for mock interviews. GR also took part in the mock interview and recently attended a meeting of the renal group. KB is in the process of trying to reboot PPI strategy in Paediatrics which will include parents and children. There was a recent event run by a graphic facilitation company called Dead Cat Dreaming. Children involved in research spoke about their experiences and the facilitators helped them to produce a piece of art to represent this. advised the group that along with funding for a new BRC funding for 5 years, there are now new research themes: Oral health Regenerative Medicine Women s and Children Health AD attended the St. Antonio breast cancer symposium and also delivered training to researchers with AQ. 8. CO to send the report for the Evelina event with the PPIAG minutes 3
4. Update on projects No Item PPIAG lead 1 Payment of time Alero for Patient Dabor Representatives 2 Organisational Structure to be made clearer for PPIAG Members 3 Skills & Attributes Analysis of each PPI member 4 Groups and Structure - Brenda Thompson- Murray Graham Roper BRC lead CO Plan of action Group informed that Martin Lodemore, Senior Advisor for INVOLVE will be presenting at the 23 rd March PPIAG Members advised that a proposal for a new policy has been sent to the Chief Operating Officer for the BRC for her approval and advice. This paper has been written using guidance from other BRCs and INVOLVE. to update group in March when the full information on the new structure of the BRC has been formalised CO shared the spreadsheet with the group and all agreed that it was useful. This will be updated as necessary GR clarified that his request was for a list of all current PPI groups within the BRC and boards that can approve trials. CO informed the group that these are the current groups within the BRC: Cardiovascular Research Advisory Group Cardiovascular Paediatric Group (in set up) Cardiovascular Healthcare Technology Cooperative Imaging Group (in set up) Dermatology Research Panel Proactive care of Older People undergoing Surgery (POPS) Respiratory Research Advisory Group Proposed completion 23/03/2017 23/03/2017 COMPLETED 04/05/2017 4
5 Training Nanik Pursani 6 Presence of PPIAG at Board Meetings Colin Streete 7 Website & Media Nzinga Gardner CO South East London Consumer Research for Cancer (SELCRP) South East London Paediatric Research Group Stroke Research Patients and Family Group Women s Health Research Advisory Group (pre term birth) CO will find the rest of the information and will present to the group An audit of current L&D activities to be conducted including teaching opportunities with KCL (MPH) Picture of Activity Claire will start this and send to NP for feedback advised the group that the Chief Operating Officer is happy for this to take place and this will be discussed further at the next meeting 04/05/2017 23/03/2017 to continue work on this with Nzinga and update at the next PPIAG 23/03/2017 5
5 Review of PPIAG paperwork and strategy CO asked the group to look over the papers which were circulated with the agenda: Patient and Public Involvement Advisory Group: Statement of Purpose PPIAG planning document February 2017 Public Engagement Strategy 2014 2017 Changes will be made based on the group s discussion and members were asked to send further comments to CO. These will be discussed further at the next meeting. 6 Any Other Business It was suggested that one of the HRA Ethics Chairs should be invited to a PPIAG meeting. advised the group that there would be events to celebrate International Clinical Trials Day on Friday 19th May and members were invited to suggest ideas and to come along. is also planning a celebration event for the BRC in June. More details will follow. 9. CO to send the revised papers. 10. All members to send comments to CO 11. CO to contact HRA Ethics Chairs Dates for next PPIAG meetings Thursday 23 rd March 2017 Thursday 4 th May 2017 Thursday 15 th June 2017 Thursday 27 th July 2017 Thursday 7 th September 2017 Thursday 19 th October 2017 Thursday 30 th November 2017 6