NIHR INVOLVE definition Research being carried out “ with “ or “by “ members of the public rather than “ to “, “ about “ or “ for “ them PPI- What matters to Crucially not Engagement with researchers or participating in me…….. research Have broad PPI experience, lay grant review, member of funding committee’s, member of patient and public groups, co applicant on research grants, help educate researchers about Involvement and Insight
Why Patient and Public Involvement? Research can’t To ensure that Research gives me succeed without research meets the hope, no one will Collaboration and patients, blood and actual needs of want a researcher to multi disciplinary tissue samples, patients rather than succeed more than a working improves imaging etc, publicly perceived needs. patient living with a everything funded. Ethical and Survival V Quality of disease moral considerations life
“ Someone who shares your common goals but not blindly and not without question “ G Laidlaw 2018 Be constructive, explain your reasoning Being a Grants go through robust review process, best to get issues sorted before submission Critical Friend OK to use personal experience to illustrate your point but try to consider wider picture too It’s permissible to be critical, offer alternative point of view, point out flaws or weaknesses
Is this topic important to If this research wasn’t me and other patients? Is funded how would I feel there something more about that? important? So What Would this make a What would be my priority difference to my quality of for research? life? What symptom/s do I have that are ignored or that there isn’t an answer for?
• Have the research team chosen the right measures? • Are they important to me as a patient? PROMS: • Are the outcome measurement tools the right Patient ones? • Were the outcome measurement tools Reported developed with patient involvement? Outcome • Do they accurately measure my experience? • Do test results such as troponin, echo’s, MRI Measures scans correspond to my symptoms? • How many questionnaires are too many/ measurement overly burdensome?
Many more people living with multi If exclusions are too broad then what morbidity but research doesn’t always relevance will the research have reflect that especially if it informs treatment guidelines Exclusions How do we make research “ real world “ ?
Beware issues such as Burden of participation
Only being invited to comment Short turn around time…. 2 days on wording of lay summary or before grant submission patient info sheet deadline Personal Asked very specific questions and not allowing me to Not getting feedback comment on issues important to soap box…… me Concept that patients have to be “ just right “. Too experienced/not experienced enough. Representative or not. Too knowledgeable/ not enough knowledge. Too focussed on own experience/invited to share story
Can be difficult to How much say do make your voice patients have is heard and over the final taken notice of grant application It’s all about Power Researchers need to give up some Beware virtue power to patients signalling for meaningful involvement to take place
GIVES ME A FEELING OF SELF TRAVEL ALL OVER THE UK, ? Personal WORTH, THAT I STILL HAVE PARIS THIS YEAR SOMETHING TO OFFER Positives HAVE DEVELOPED LOTS OF MET LOTS OF PEOPLE, SOME NEW SKILLS HAVE BECOME VERY GOOD FRIENDS
Patients would be involved We wouldn’t be expected to Every grant would have a lay from identifying research be representative of ALL co applicant question to dissemination patients In an ideal and all points in between world….. Our contribution would be PPI would be mandated for recognised by appropriate all grant applications and financial or other reward funding refused if not compliant
Take homes Its about everyone Don’t view PPI as Think of PPI as using their skills THEM and US, conversations and experiences to ultimately we all improve research have the same aim
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