Galway is a beautiful, bustling, bracing city on the West Coast of Ireland. It is full of laughter, music and poetry. Lovely people, great food and there might have been some drink! It is easy to see why it is to become European Capital of Culture in 2020. Follow @Galway2020
I had the pleasure of visiting Galway last week to give a talk at the National University of Ireland - Galway as a direct result of my involvement with the PRioRiTy Study (Prioritising Recruitment in Randomised Control Trials) a joint NIHR James Lind Alliance and HRB Trials Methodology Research Network initiative.It was great to meet so many researchers from medicine, engineering and primary care.
The HRB began by its plans by inviting people to comment on how the public might get involved and the survey results clearly show how much is already taking place.
The Medical Research Charities Group, Ireland held an event about Patient and Public Involvement in Research in September 2016 and have produced an excellent Conference report. The Conference presentations can be found here. You can follow @MRCGie
IPPOSI - The Irish Platform for Patient Organisations, Science and Industry - is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of policy and medicines development. They have also produced some very helpful booklets about Clinical Research.
You can follow @IPPOSI and @DerickOMisteal
Marie Ennis-O'Connor, a patient advocate social media consultant, who trained in Dublin has produced a great set of slides which describe the value of working together in a shared endeavour of co-design. The slides can be found on this Slide Share and you can follow Marie @JBBC
My talk in Galway can be found using the hashtag #PPIinResearch but it had 6 main points
1. START WITH A PURPOSE - Let Form follow Function - It is much better to start with a clear notion of why and what you want to do. e.g. A) Research cycle (See handy RDS booklet); B) Research Processes (Funding bodies, Oversight Committees) C) Organisational Change (Experience talks, sounding boards, focus groups) or D) Co-facilitators for a focus group, co-applicants and partners in the protocol. Each may require different people with different skills needed
2. REACH OUT - A) Diversity of age, background, culture to widen the involvement to the seldom heard. B) Consider online, social media, etc; C) Charities taking more pragmatic approach , closer to patients, influencing their practices and priorities. Alberta Cancer Foundation - segmented relationship, Cancer Research UK model of right people for right role, Parkinson's UK approach (See note above for Medical Research Charities Group, Ireland). Value in UK comes from PPI cross fertilisation of ideas, people, practices, safe place and a learning set approach
3. THINK IMPACT - what difference is this intended to achieve. Impact is coming up the Agenda. Impact: Research + People. Also easier and more possible when you allow form to follow function. Plan for Impact at beginning. Exploring Impact, Parkinson's
4. SUPPORT PEOPLE - your researchers and their research to do this well - provide training that is separate and combines with patients; how you could help support groups and individuals by offering the advice, the skills and knowledge. Leadership, learning and development - MOOC
5. LOOK AROUND - Other countries following and leap frogging - Europe (patient organisations), Australia (citizenship), America (advocacy), Canada (Charity core value, segmentation of patient experience), Denmark (open access information), Japan, etc. (see below). We became fixed rather than fluid.
6. INVOLVEMENT IS NOT SCIENCE - Nor an industry. It does not need to be complicated. Develop a change culture and build a critical mass; the only way of working is common endeavour, shared learning and knowledge transfer.
A summary of Patient & Public Involvement policy in UK can be found here.
It is also important to remember that Ireland has a long history which includes the diaspora of intellect, skill and labour to all parts of the world but also those forced to leave specifically during the Famine. The monument at Galway marks a poignant reminder.
The HRB has recently set up the Ignite Awards call designed to build capacity in Institutions that will help provide researchers with the
support they need to involve patients and the public in their research and convey this in their grant
applications.
The Medical Research Charities Group, Ireland held an event about Patient and Public Involvement in Research in September 2016 and have produced an excellent Conference report. The Conference presentations can be found here. You can follow @MRCGie
IPPOSI - The Irish Platform for Patient Organisations, Science and Industry - is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of policy and medicines development. They have also produced some very helpful booklets about Clinical Research.
You can follow @IPPOSI and @DerickOMisteal
Marie Ennis-O'Connor, a patient advocate social media consultant, who trained in Dublin has produced a great set of slides which describe the value of working together in a shared endeavour of co-design. The slides can be found on this Slide Share and you can follow Marie @JBBC
My talk in Galway can be found using the hashtag #PPIinResearch but it had 6 main points
1. START WITH A PURPOSE - Let Form follow Function - It is much better to start with a clear notion of why and what you want to do. e.g. A) Research cycle (See handy RDS booklet); B) Research Processes (Funding bodies, Oversight Committees) C) Organisational Change (Experience talks, sounding boards, focus groups) or D) Co-facilitators for a focus group, co-applicants and partners in the protocol. Each may require different people with different skills needed
2. REACH OUT - A) Diversity of age, background, culture to widen the involvement to the seldom heard. B) Consider online, social media, etc; C) Charities taking more pragmatic approach , closer to patients, influencing their practices and priorities. Alberta Cancer Foundation - segmented relationship, Cancer Research UK model of right people for right role, Parkinson's UK approach (See note above for Medical Research Charities Group, Ireland). Value in UK comes from PPI cross fertilisation of ideas, people, practices, safe place and a learning set approach
3. THINK IMPACT - what difference is this intended to achieve. Impact is coming up the Agenda. Impact: Research + People. Also easier and more possible when you allow form to follow function. Plan for Impact at beginning. Exploring Impact, Parkinson's
4. SUPPORT PEOPLE - your researchers and their research to do this well - provide training that is separate and combines with patients; how you could help support groups and individuals by offering the advice, the skills and knowledge. Leadership, learning and development - MOOC
5. LOOK AROUND - Other countries following and leap frogging - Europe (patient organisations), Australia (citizenship), America (advocacy), Canada (Charity core value, segmentation of patient experience), Denmark (open access information), Japan, etc. (see below). We became fixed rather than fluid.
6. INVOLVEMENT IS NOT SCIENCE - Nor an industry. It does not need to be complicated. Develop a change culture and build a critical mass; the only way of working is common endeavour, shared learning and knowledge transfer.
A summary of Patient & Public Involvement policy in UK can be found here.
It is also important to remember that Ireland has a long history which includes the diaspora of intellect, skill and labour to all parts of the world but also those forced to leave specifically during the Famine. The monument at Galway marks a poignant reminder.
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