Current status of PPI Ijeoma Uchegbu PPI Knowledge

Current status of PPI Ijeoma Uchegbu PPI Knowledge Transfer Event DEC London

PPI KTE Survey • AIM was to understand the status of patient and public involvement in the NIHR DECs and HTCs • DISSEMINATED – Within DEC and HTC organisations – Lay members – Non-lay members • Twenty eight (28) RESPONDERS to the survey • Information used to inform the KTE NIHR DEC LONDON

About responders (1) Survey Responders Organisational response 30% Percentage (%) 70% 50% 40% 30% 25% 20% 15% 10% 5% 20% Type of respondee Other EC Researcher/HC prof/admin D Lay D EC 0% Le ed EC Lo s N ndo ew n D ca EC st l O e Br xfo C ain rd ar di Inju ov as ry c C ula ol or r ec ta l D 4 D En t M eric in dt e Tr ch a W u ou ma nd te ch 0% 10% D Percentage (%) 60% Organisation

About responders (2) Length of time at organisation 19% 23% 58% <1 year 1 -4 years >4 years NIHR DEC LONDON

Create Review Disseminate Other y La . . . er th of . . is s. O y ar m m su ys is al an ns /d io at ic bl Pu n ct io . . . (i. . . . at . . . en re le ai co l a at D at of ns co nn io st ue Q y . . n. . a. si g g ci p rti pa ed rm fo In nt ar de m m su tie Pa y La in ar ch nd fu rc h es ea R rm fo In se re y ic ol y/ p eg ng tti Se ra t St Percentage (%) Current PPI activities PPI input into current activities 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Activities Not applicable NIHR DEC LONDON

fu pr m cu do rc h se a re ic y ol ts en 100% 50% io nd R rit in e ie pr se g s ap ot a oc rc p h lic La ols de at io y i. e sig ns su. p n m ro /p m je ro Pa ar ct je y p ct tie of la p nt th n rop pa e os pr rti In al ci o fo s/ je pa rm ct t ed io n/ co in Q fo ns in ues rm en te ti at rv on tf io ie n or n w ai m sh s) re ee D ( i. e at t. f a or co lle su c rv t D io ey at n s a an Pu an d pa bl al ys pe pe ica is w er rs tio eb -r. L a ns si eavyi nd /d te es re is s wuem p se et dm o m c) joa rts in uryr fo ati noa r p on flst u ( h, e b i. e nep lic. wro ati sjle on O ect th te in er rs , rm fo ng /p Percentage (%) 0% In tti Se gy te ra St Future PPI activities PPI input into future activities Activities Create Review Disseminate Other Not applicable NIHR DEC LONDON

Percentage (%) Activities Create Review Other Not applicable Disseminate Questionnaire (i. e. for surveys and interviews) PPI input into current activities Strategy/ policy documents Other Lay summary of th. . . Publications/disse. . . Data analysis Data collection Questionnaire (i. e. . Informed consent f. . . Patient participatio. . . Lay summary of th. . . Research design/p. . . Inform funding app. . . Setting research p. . . Percentage (%) 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Strategy/ policy do. . . Comparison of current & future activities PPI input into future activities 100% 80% 60% 40% 20% 0% Activities Create Review Other Not applicable Disseminate

“Other” • • • “Activities vary from project to project” - unable to answer question Focus groups Group Discussions “Awareness raising” Input Into KTE Social media dissemination Yearly review Identification of need Co-design technology PR and communication NIHR DEC LONDON

Challenges faced incorporating PPI into research • • • Engaging researchers/clinicians/industry Recruitment of lay members with an interest in the research Understanding lay member capacity to be involved in research Knowing how much to expect[ations] Obtaining funding for PPI research activities Deadlines and timescales Variations in involvement from different researchers Gaps in experience and knowledge Training of lay and non-lay members Lack of national policy describing “how to” Understanding of ethical processes for involving patients in research Time consuming NIHR DEC LONDON

Workshop - Challenges • Which challenges are most important? Please vote for two challenges you feel are most important • Now, within your groups please discuss your allocated challenge – Describe challenge – Who is affected – What impact does it have – How to mitigate negative impact • You have 20 minutes to discuss within your groups before a whole group discussion about challenges led by appropriate group • If you have any time have time, discuss other challenges NIHR DEC LONDON