conflict of interest...50 100 150 200 250 300 short term heart long term survival long term survival...
TRANSCRIPT
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Patient and public involvement in research Gavin Perkins
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Conflict of interest
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Outline
• Changing landscape
• Briefing notes for researchers
• Experience with PARAMEDIC2
https://www.invo.org.uk
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From research subject to research partner
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Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
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Why patient and public involvement?
Democratic
Improve quality
Improve relevancy
Improve acceptability
Accountability
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https://www.invo.org.uk/resource-centre/resource-for-researchers/
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https://www.invo.org.uk/resource-centre/resource-for-researchers/
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What is patient and public involvement?
Participation
Research subject
Complete questionnaire
Engagement
Science festival
Debate
TV / media
Dissemination
Involvement
Co-applicants
Research cycle
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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
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Engagement
• First aid conference
• Community group meetings
• Community facing trial materials
• Media
• Dissemination
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Concept, acceptability, outcomes, priority
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There is a need for a trial
0
20
40
60
80
100
Agree Neutral Disagree
%
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Willing to participate
0
20
40
60
80
Agree Neutral Disagree
%
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0
50
100
150
200
250
300
Short term Heart Long term survival Long term survivalwithout brain damage
Important outcomes
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• 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
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Press
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Patients and
public
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What is patient and public involvement?
Participation
Research subject
Complete questionnaire
Engagement
Science festival
Debate
TV / media
Dissemination
Involvement
Co-applicants
Research cycle
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• Co-applicant – John Long
• Patient and public advisory group
• Resuscitation Council (UK) Patient Group
Involvement
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How we approached PPI
• Planning and preparation – involved early
• Clear about what you want
• Accessible
• Provided appropriate resources
• Offered training and support
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PPI throughout the research cycle
Prioritising research
Research design
Advisory /
Management
Data collection and analysis
Dissemination and
implementation
Consultation
Collaboration
Co-production
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Communication: Key messages
• Cardiac arrest
• Helpful or harmful
• Ethics
• Consent
• Trial results
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Heart attack versus cardiac arrest
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Helpful or harmful?
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Ethics
Autonomy Justice
BeneficenceNon-
maleficence
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Consent
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Consent
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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
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Trial results
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Trial results
Benefit and burdens, epi-pens, paramedics
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Involvement
Engagement
Participation