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Patient and public involvement in research Gavin Perkins
Conflict of interest
Outline
• Changing landscape
• Briefing notes for researchers
• Experience with PARAMEDIC2
https://www.invo.org.uk
From research subject to research partner
Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
Why patient and public involvement?
Democratic
Improve quality
Improve relevancy
Improve acceptability
Accountability
https://www.invo.org.uk/resource-centre/resource-for-researchers/
https://www.invo.org.uk/resource-centre/resource-for-researchers/
What is patient and public involvement?
Participation
Research subject
Complete questionnaire
Engagement
Science festival
Debate
TV / media
Dissemination
Involvement
Co-applicants
Research cycle
Participation• 3999 placebo, 4013 intervention• Consent to continue
• 3 month (14 LTFU)• Neurological outcomes• Health related quality of life• Cognitive outcomes
• 6 months (49 LTFU)• Neurological outcomes• Health related quality of life
Engagement
• First aid conference
• Community group meetings
• Community facing trial materials
• Media
• Dissemination
Concept, acceptability, outcomes, priority
There is a need for a trial
0
20
40
60
80
100
Agree Neutral Disagree
%
Willing to participate
0
20
40
60
80
Agree Neutral Disagree
%
0
50
100
150
200
250
300
Short term Heart Long term survival Long term survivalwithout brain damage
Important outcomes
• 66,000 leaflets, 7000 posters
• Registry offices • HM Coroner • Libraries • Council offices • GP surgeries • Pharmacies • Hospital ED waiting areas• CCU waiting areas • Hospital outpatient waiting areas • Community Centres / parish councils• Healthwatch
Engagement
Press
Patients and
public
What is patient and public involvement?
Participation
Research subject
Complete questionnaire
Engagement
Science festival
Debate
TV / media
Dissemination
Involvement
Co-applicants
Research cycle
• Co-applicant – John Long
• Patient and public advisory group
• Resuscitation Council (UK) Patient Group
Involvement
How we approached PPI
• Planning and preparation – involved early
• Clear about what you want
• Accessible
• Provided appropriate resources
• Offered training and support
PPI throughout the research cycle
Prioritising research
Research design
Advisory /
Management
Data collection and analysis
Dissemination and
implementation
Consultation
Collaboration
Co-production
Communication: Key messages
• Cardiac arrest
• Helpful or harmful
• Ethics
• Consent
• Trial results
Heart attack versus cardiac arrest
Helpful or harmful?
Ethics
Autonomy Justice
BeneficenceNon-
maleficence
Consent
Consent
I've tried to think back to my own experience. With everything that was going on in the moments surrounding and immediately following his death, I don't think there's any way I could have dealt with.
The days after are full of frantic activity, there's so much to be done with arranging funerals etc., and receiving something through the post during that period would have felt much more like an intrusion than anything else.
Making it possible for people to seek information means that if they choose to do so, they can also choose when to do so
Trial results
Trial results
Benefit and burdens, epi-pens, paramedics
Involvement
Engagement
Participation
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