#GPFE Sue Sheridan PCORI seeking to, and actually, influencing research entities in USA and globally to take similar approach.

#GPFE Kamoga Uganda: talking about her mother who always smiled at her doctor who never smiled back. What resources does it take to smile?

#GPFE Sue Sheridan: Relationships between researchers and patients lasts way beyond completion of a particular study.

#GPFE Sue Sheridan: Researchers meet patient engagement milestones as well as scientific ones. If they don't meet them they don't get paid.

#GPFE Sue Sheridan: PCORI has developed on-line tools to facilitate engagement.

#GPFE Sue Sheridan: Engagement of patients in research requires capacity building. They (the patients) decide what meaningful engagement is.

#GPFE Sue Sheridan Patients re-writing consent forms.

#GPFE Sue Sheridan PCORI only funds research where patients are on the design team and study aimed at questions that matter to patients.

#GPFE Sue Sheridan(PCORI): Quotes Google principle 'Focus on the user and all else will follow.' Not bad idea in healthcare, she says.

#GPFE Gonseth Ecuador: 2012 60% of media stories negative; in 2014 3%. Could not have been done without patient involvement.

#GPFE Gonseth Ecuador: after turn-round it is 'a different hospital' Did it with no increase in budget.

#GPFE Gonseth Ecuador: Annual Public Accountability Session. Lasts a whole day.

#GPFE Gonseth, Ecuador, talking about crisis in standards of care in a major hospital; 'revolution' in patient engagement transformed it.

#GPFE Patient board member should have a name plate with their name and 'representing 200,000 people who use this hospital.'

#GPFE Discussion point. Beware of pharma or device company reps becoming patient representatives on boards.

#GPFE Real time patient feedback can be very powerful.

#GPFE Need a place or a forum that is fully understood that patients can go to.

#GPFE Meaningful engagement means activity at policy-level, direct care-level and community-level.

#GPFE Many complaints in Irish health system involve poor staff attitudes and some of this down to not being valued or burn-out.

#GPFE Your integration is my fragmentation. Understand in full the implications policies for change in health system design.