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